Okay, here I ago again. My health problems which i was hoping were finally behind me after they found and removed the tumor on my spine last year, are back again. It started back before Christmas, when i had the mild seizure that the doctors could not explain what caused it, and has just progressed from there.
I have been keeping quiet about it ad not saying anything to anyone, cause for one i did not want to worry anyone, and two i felt embarrassed and like a weakling...but i know how the support of friends and family can help so i am reaching out again.
Anyway, i am getting terrible back of the head headaches, where i can barely lift my head off the pillow, followed by back pain, and numbness in my face, hands and feet. My vision is blurry at times. I go from the sweats to the chills.
So in other words something is up again with me. I feel fustrated and aggravated cause i thought this was all behind me.
My husband and I are looking into a therory he has. He thinks i might be leaking spinal fluid or have very low spinal fluid. It can casue bad headches, and the numbness i am getting. Over the last five years i have had three spinal taps. Each tme they could get very liitle spinal fluid out of me, and the last time the guy did not know what he was doing, and i started leaking what fluid i had and had to have what what they call a emergency blood patch done to stop the leaking.
Then 2 years ago when i went in for the needle biopsy of the tumor they found on my spine, the doctor at that time said there was some clear fluid in the biopsy that looked like spinal fluid, and asked me if i had ever had a botched up spinal tap. at the time i did not think anything of it, cause i was more concern about the tumor on my spine, but now my husband and I are wondering if i am still leaking fluid or have low fluid levels.
So now i just nedd to find a decent neurologist to go to. Lord knows i am not going back to one i had been going to, after he neglected to tell about about the tumor on my spine.
I know there are people on here who have it worse off then me, but i could really use some postive thoughts and prayers right now.
You shouldn't have kept quiet, always give people a chance to help in any way they can.
You will be in my thoughts and prayers.
Ferret
Thanks Ferret. I appreciate it ! :)
Hugs & Prayers. That sounds like a plausible theory to me. I hope you find a good neurologist soon.
Hugs and prayer my dearest Amy. I hope they will find out what gives you so much pain and suffering and fix it, and you'll be better again.
((hugs))
Thoughts and prayers for you Amy!
O Amy... you should have said something. Many hugs and prayers for you and your family.
Amy
Sorry to hear about the renewed problems. I had a medical problem myself a few years back. It was hard dealing with it then, and I was very happy when it was all over. Then I had a relapse this last year, and it was much more difficult because, like you, I thought it was behind me. The good news is that I beat it again, and the sun is shining once more. You will too, and things will get back to normal. Just hang in there. And count on your friends here for support and affection. It makes all the difference in the world.
Bodharan
Thanks all ! The support and encouragement is appreciated. I can't type much right now, cause i can barely hold my head up without dizzy , but i will keep you all posted. Thank you all again !
Darling Amy
I am so sorry that you are sick again, but I am praying for you and will be putting you on my prayer list at church. I am surrounded by prayer warriors and soon you will be too. I love you my friend and I want you to know that you have reached out I am placing you in the safety of the Father's hand...nothing can harm you there if only you put your faith in him.
Remember two things....
I love you....
God loves you....
LOVE your baby sis
Amy you are so in my prayers girl! Hang tough like I know you can.
Amy,
Our thoughts and prayers are with you and your family.
Terri
Amy as always you will remain in my thoughts and prayers. I have faith that whoever you find to go to will know what he or she is doing and will find the right treatments to cure all these nasty health problems of yours.
Hugs to you Amy!
Thank you everyone ! :) The love , support and well wishes and prayers are very touching and moving, and very appreciated !
Well this morning when i woke i did not have any headaches. Yea, and i was able to stand up without feeling dizzy. So i was like, yea, so far so good ! My husband was at work, and my son was laying in his bed reading his books, so I decided after laying in bed for two days, i was going to take a shower.
Well big mistake. While in the shower i started to get the shakes, so i quickly rinsed off, threw on some sweats and climbed in bed. Then i called my husband, and asked him to come home to help take the dogs out and get my son his breakfast.
So my husband came home, and with his help i wanderd out to the living room to have breakfast.I could not sit up for vey long. My head kept feeling like some one was pressing down on it, my vision was going blurry and i kept getting tingling in my arms and face. So back to bed i went.
When i felt up to it, this afternoon, i layed in bed with my laptop, and researched Neurolgists around here and in Syracuse. I hate just picking one without any references from someone givven my past luck with a couple of my doctors, but i may have no choice, for i cant keep ging on the way i am now !
it is so fustrating cause i was doing so well, and was able to do things with my son that i had not been able to do in awhile. Ugh, but i am not going to let this get the best of me. I am fighting it all the way. Today after doing some research on the laptop, my son and i watched cartoons together. I am not going to let this illness ruin my time with him.
Right now laying here, my face keeps tingling like crazy. So yea, time to hopefully get to the bottom of al this. I'm not looking forward to more tests and more meds, etc...but am willing to do whatever it takes to get me back on my feet again.
{{HUGS}}
I can only imagine how frustrating this must be for you, but know you ALWAYS have a place of support with your Fairmily to vent, cry, or just...well...be supported :P
My thoughts are with you :)
Amy!
Never never ever feel embarrased to "talk" to us. We are here for you.
I'm so sorry to hear you are having so many problems again! It seems the best of us are always the ones who have the hardest things thrown at them to deal with. But I know you are strong and will get through this. You are in my thoughts and my prayers.
Today was a so-so day with more numbness, tingling and shakes. I called one nuerologist place and could not get in until another five weeks. So i'll keep searching for now. But i am hanging in there, and trying to keep my spirit up. Just trying to take it easy and rest right now, cause i feel totally run down right now mentally and physically.
Sending you LOTS of HUGS and PRAYERS, know we all are here to listen.And everyone needs a little prayer sometime and now is your time and we all want to help!
Just out of curiosity, what has your family doctor said? Has he recommended a neurologist? If he has and you haven't had satisfaction with that one, can he recommend another? Perhaps that could help you get in faster.
Amy dear as always you remain in my thoughts and prayers. The main thing is to keep doing what you are doing right now and that is take it easy and take care of yourself.
Hugs to you!
unfortunately, by the time i got done calling the one neurologist yesterday, my family doctor was gone for the day. She has short friday hours.
anyway i have been trying to research some of my symptoms, and i been going thru my med records and reading my past med reports....and it leaves me not knowing what to think, as far as what type of doctor i need to see.
I have the numbness , and tingling and pressure headaches and dizziness--so do i nedd to see a nuerologist or is it due to my diabetes..although my blood sugar levels hav been fine lately.
Or do i have a hormone or chemical imbalance and need to see an endrocrinologist. I'm I starting peri-menopause. Ugh !
and then i have neck pain and back pain and wonder if i nedd to see a orthropedic doctor. One of my past cat scans shows two bulging discs and i wonder if they could be acting up.
So it's like okay..where do i start.
I'll probably call my family doctor on monday, although i am not keen on my family doctor and have often thought about finding a new family doctor, because for one example, I was after her for three years to test me for diabetes, cause i showed the signs and symptoms, and she never would, and when she finally did, i tested positive with high sugar levels.
excuse my typing..my vision is a bit blurred today.
so i'm thinking optimistic, but it is very confusing as to who to go see, but somehow I shall persevere and get to the bottom of this, if it does not drive me crazy first ! :)
hugs everyone and thanks for the continuous support and well wishes !
I love you Amy, and I just want to tell you that even from your sick bed you have brought the most immense joy into my life! Thank you love!
Hang in there Amy, you have us here for you all the time. You never leave my prayers and this year at SRF we will have to have birthday drinks to celebrate the life we have!
Thank you sis and thankyou bro ! ;D
Yes, Drake, you still owe me a birthday drink from last year. Gee between last years drinks and this years , it looks like we will be having a grand old time at the Bad dog tavern this year !
Yeah, i'd say so! in the long run after we buy each other birthday drinks..it would be like..we just bought drinks for ourselves lol! man..making up for lost time would be disasterous , srf would be in danger with the 2 of us a little on the tipsy side !
....herm that sounds like fun...
Can I join?
we would love to have you join us Drac. Drake's birthday falls on July 25, and mine on July 29, so whatever weekend that falls closet too, is usually the one we celebrate on at Sterling. and it usually always falls on pirate theme weekend at Sterling.
We could get in lots of trouble the three of us ! ROFL !
Oh dear...I do see trouble coming!
lol..one drunk ranger, one drunk pirate captain, and one drunk wench. ;D ;D
Wait..who's the wench here? lol
Who is the wench...Drake be careful how you answer...
LOL im just challenging Amy, i know who she is going to say and im pre-emptively letting her know she is wrong ! lol
lol smart man! **hugs**
Lol..i got you both...I am the captain, Drac is the ranger..and seeing how Drake will be so looped, Drac and i will have some fun.. dress Drake up...and auction him off at the wench auction. ROFL !
and so the plot thickens....I COMPLETLEY AGREE! hehehehehehehe
Last night/ early morning was a rough night. I kept getting the tremors i get and sweating like crazy. i probaly should have went to the emergency room, but that was the last place i felt like sitting around in.You wait forever in the waiting room.
I eventually wore myself out from shaking and slept most of the afternoon. By the time i woke up it was too late to call any doctors offices. The shakes have subsided for now, but i have a headache that is getting worse and i am still sweating like crazy.If it continues i will go to the emrgency room, or one of the 24 hour quick med-redi clinics around here i guess. Right now i just feel like laying down.
i don't mean to vent..i am just so sick of this. i want to get back on my feet again.
You have every right to vent, and you need to do that sometimes, too. That is what we are here for. I have been thinking of and praying for you and will continue to do so. Big hugs to you hon.
Keep us posted. You're in our thoughts/prayers.
{{HUGS}}
...that's all :)
Hope you are feeling better, my friend. You are always in my thoughts and prayers. Sir Morgan has you in his as well. He's (as have I) been grateful for your advice and support for me and my problem.
Amy vent away. If you can't do it here then where? You cannot keep it all inside. I can relate to your frustration as I am tired of my back problem. Just hang in there and go to a doctor you trust.
Amy, it didn't sound like venting to me, just like a list of symptoms worthy of a visit to the ER, and I hope you go ahead and go if you have someone to take you! I'm not sure if they can relieve your suffering, but at least there will be someone there to document everything, and when you do get in to see your own doctors you will have it in writing for them!
Rest when you're able, dear...
HUGS
Amy don't ever feel like you can't vent on here. That is why you have all of us here, to listen to you when you need to vent. Please take care of yourself and don't over do it hon. You continue to be in my thoughts and prayers.
Hugs to you!
Well this morning i woke up with aterrible headache and the sweats. Then i started to get real shaky. then my arms started to feel like someone was squeezing them real tight. I had tingling i my hands. Then i srtaed getting pains in my chest, and i felt like i was going to heave. I went to go to the bathroom and passed out cold. Luckily my husband was home.
He called 911 and iwas taken by ambulance to the emergency room, where they did a EKG and some blood tests and gave me something for pain .
The good news... The EKG came back normal. The blood tests showed nothing.The bad news.. they had no explanation to what caused it. I was discharged and told to follow up with my family doctor.
Arrgh !
And whatever they gave me for pain in my IV is not agreeing with my stomach.
I did have a very nice nurse and she give me the name of couple of doctors to check out.
Amy I'm so sorry that you had a bad day today. I do hope that you will find the right doctor(s) that will be able to come up with answer as to what caused you to feel so bad today.
Love ya hon.
O dear Amy. I'm so sorry that you are having such a rough time. Definitely need to push the doctor and if that doesn't help a new doctor is in order. Perhaps the next time you have things happening a call to the doctor or a trip to the ER right away may catch things as they are starting. I'm just grasping at straws here. I have this intense feeling that I should be helping you find someone to do something to help fix you.
You have our prayers always.
Quote from: Celtic Lady on February 24, 2009, 07:08:05 PM
O dear Amy. I'm so sorry that you are having such a rough time. Definitely need to push the doctor and if that doesn't help a new doctor is in order. Perhaps the next time you have things happening a call to the doctor or a trip to the ER right away may catch things as they are starting. I'm just grasping at straws here. I have this intense feeling that I should be helping you find someone to do something to help fix you.
hanks hon! The joys of living in a small country area. the doctors are limited here. Alot of the good doctors have left to go to bigger cities for better pay. I am going to try calling this one doctor the nurse at the hospital gave me today. If that does not work, I have the name of a doctor in Syracuse to check out.
it is hard cause i have so many different symptoms, and they mimic differnt things. Like i said before it is hard to tell if it is somehing neurological ( tey were watching me for MS for awhile ), or is it te bulging discs in my back acting up, or if i havesome hormone imbalance.
I have faith though that i am going to get to the bottom of this somehow !
You will get to the bottom of it Amy, no worries! You're prayers won't go unanswered, I can tell you that for certain! Just hang tough...which won't be hard..you can beat me up =x
You are going to be fine soon honey....I declare that in the name of Christ!
There we go...He's got it and He's got you...soon dear heart...and when you are better...you will be there to help me beat up drake and then catch the baby in the delivery room...hey if we are naming it after you..you gots to be there!
quote:
bulging discs in my back
I know this is the last thing you want to hear but have you thought about surgery for those bulging discs yet?
Quote from: lordwriothsley on February 25, 2009, 03:32:22 PM
quote:
bulging discs in my back
I know this is the last thing you want to hear but have you thought about surgery for those bulging discs yet?
Not yet. !!
You know my story about how i would not have even known about the tumor on my spine except that i went to the MRI place that took all my MRI 's and cat scans and asked for my films and reports. and why reading a written report by the radiologist learned about the tumor, and was like " What the......?" and then was very upset cause the report had been wriiten two years prior and no one had seen anything to me.
Well the same thing happened with the bulging discs. I would have not known about them either, except that the Thoracic surgeon who removed the tumor last year told me he spotted them right aawy when he was looking thru my films and cat-scans.
Which is why i have little faith in my neurologist i was seeing here, or my family doctor, cause they have keept very important medical info from me. My Gosh, the tumor when they went in to remove it, was found to be not only on my spine, but starting to wrap itself around part of my heart. Who knows what could have happen if it had not been removed. It is just terrible that these doctors neglected to tell me this info.
So yes, i have no faith in the doctors here, and continue to search for a decent doctor in one of the out lying areas. after my run around here, i guess i am gun shy a bit and don't want to just pick someone i have not heard about before.
as for surgery on my bulging dics, i am hestitant because i know two people who have had back surgery and they are worse off now then before they had surgery.
also i am still not sure wheter i am looking at a neurological problem, a spine /neck problem or hormone.
I guess i could check out all three. Just what i want to be running to a whole bunch of different doctors. But one way or another i nedd to solve this matter once and for all hopefully. I have heard of some conditions that never totally get solved. the doctors just try to treat the symptoms.
I nedd a doctor like " Dr. House" on the show " House." ;D
Quote from: Lady Amy of York on February 25, 2009, 04:25:34 PM
as for surgery on my bulging dics, i am hestitant because i know two people who have had back surgery and they are worse off now then before they had surgery.
Am I one of them? Well I am worse off now but not because of the back (that is actually as bad as before surgery) but more because of Ron's passing. The important thing is not giving up and finding a doctor that makes sense.
Quote from: Lady_Glorianna on February 25, 2009, 05:27:26 PM
Quote from: Lady Amy of York on February 25, 2009, 04:25:34 PM
as for surgery on my bulging dics, i am hestitant because i know two people who have had back surgery and they are worse off now then before they had surgery.
Am I one of them? Well I am worse off now but not because of the back (that is actually as bad as before surgery) but more because of Ron's passing. The important thing is not giving up and finding a doctor that makes sense.
LOL ! make that three people i know. The other two being my mother n law, and a old neighbor of mind.
Sorry you are still having problems with your back. You continue to me in my thoughts and prayers.
Yes, i agree the important thing is not to give up !
Continuing to check out doctors and making phone calls to different doctors trying to get an appointment as soon as possible.
One neurologist was booked up for months.
another dcotor I called wanted all my records and personal info up front first, and then they would look over them, and decide wheter i nedded to see them or not, and then there was no guarantee of an apponitment and my husband was like, why should we hand over all this personal info to you on Amy, when you might not even see her.It just sounded strange and like they were giving us the run around.
Then we called the MS specialist I had seen once before and talked to a nurse there and said she would tell the doctor i saw about my current symptoms and see if he wants to see me and investigate furthur the possibility of MS or if he thinks i nedd to see a general neurologist.So waiting for a call back from them.
and then along with seeing a neurologist my husband and i thought we should also seek out an endocrinologist/diabetes expert and rule out any endrocrine problems or diabetes complications.
So i found a place in Syracuse that has a excellent reputation. Called there and they wanted my latest blood tests. I said sure no problem, I will call my family doctor and ask for them.
So called the family doctor and the nurse there is like" Well why are you going to syracuse when we have an endrocrinologist here in town?"
I tried to explain to her because the group i found in syracuse were associated with the Joslin Diabetes center in Massachussettes and they were suppsoe to be very good.
Anyway, the nurse went on to say that it has been awhile since i had a glucose test done, so right now to make a long story short , i am scheduled for blood work on Monday and then i am to make a appointment with my family doctor after that.
In the mean time, the chest pain is gone knock on wood, but i still am getting dizziness, tingling all over, slurred sppech at times, numbness, and episodes where i start shaking all over. Real fun ! My vision also gets blurry, and my face, hands and feet and even around my stomach are puffy. Ugh ! But i am hanging in there, and trying to think postive and keep the faith. :) Some days easier then others ! :) But it could always be worse. Atleast I alve and breathing ! ;D ;D
I'm so sorry you've been having so many problems, Amy, and particularly with people who are meant to be there to help you instead of making you more stressed and angry! I am glad the chest pains have stopped, though!
I'm praying for your healing and comfort, my friend, and sending you courage and strength to help you through, as well! I am so impressed by your spirit and faith during this trial, and I know you have the strength to withstand it. Take care of your self, and get plenty of rest, ok?
HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS
Amy always know that I am in your corner and that I will be here whenever you need me. You continue to be in my thoughts and prayers hon.
Love ya sweetheart.
{{HUGS}}
Thanks evryone. i am just trying to think postive, and keep myself busy, like playing board games with my son when i feel up to it, and hanging out with friends on here who always know how to make me laugh.Love you guys !
Happy to hear that the chest pain is gone. Keep us posted, we are all thinking of you.
Went and got some blood work done today . Now i am waiting for my appointment with my family doctor, so that I can get a couple doctor referrals from her. Actually i asked to see her physican's assistant. I like him much better. He is easier to talk to and takes the time to listen to you and answer any questions you might have.
in the mean time, i hanging in there. Taking it one step at a time. Still getting the numbness, tremors, bluured vision, and dizziness, but i am trying to keep my strength and fight it all the way, and not let my body succomb to whatever is going on to me.
It is deffinitely affecting my hands and face. feels so strange at times. It really tingles.
The hardest part is that it is also affecting my legs and my balance. I'm okay in the house, but when i go outside or like today to the doctors, i have to hold onto my husband to keep my balance.
But i'm hanging in there. Keeping the faith !
Don't you just love paying your co-pay just so you can get a referral?
Hope the referrals come through! I'll be praying for you, dear!!!
Sending you continuing get well wishes, thoughts and prayers! :)
Quote from: Lady Amy of York on March 02, 2009, 01:42:39 PM
Went and got some blood work done today . Now i am waiting for my appointment with my family doctor, so that I can get a couple doctor referrals from her. Actually i asked to see her physican's assistant. I like him much better. He is easier to talk to and takes the time to listen to you and answer any questions you might have.
in the mean time, i hanging in there. Taking it one step at a time. Still getting the numbness, tremors, bluured vision, and dizziness, but i am trying to keep my strength and fight it all the way, and not let my body succomb to whatever is going on to me.
It is deffinitely affecting my hands and face. feels so strange at times. It really tingles.
The hardest part is that it is also affecting my legs and my balance. I'm okay in the house, but when i go outside or like today to the doctors, i have to hold onto my husband to keep my balance.
But i'm hanging in there. Keeping the faith !
Amy you continue as always to be in my thoughts and prayers. You are such an amazing woman and an inspiration to all of us on here. Hang in there and keep the faith cause in the long run everything's gonna be alright. I promise you that. :)
Thanks everyone !
Thanks for the kind words Lord W !
I'm hanging in there . I hang out with my son, and family, and come on here when i need a few laughs, etc ! I take it one day at a time, and try to do as much as my body will let me do. ( not going let whatever this is get the best of me.) I never know when the tremors/ shakes going to hit me., and my vision is still being affected .Still getting the numbness in my hands and feet, and especially in the right side of my face.
My biggest concern right now is that my hands and especially my feet are really puffy. My right foot being the worse and there is little feeling in it. Has me very concern, but i am trying to think positive here.
Tomorrow i go to the family doctor . Hopefully i can get some answers and some refferals to doctors/specialists. Lets put it this way, i just won't leave until i do !
Wish me luck !
Thanks everyone for the continuous thoughts and prayers and well wishes !
Hugs to you all back !
Do you have any idea what is causing your hands and feet to get so puffy Amy? Maybe that is something you should mention to your family doctor when you go see them next time.
I plan to today, when i go see the doctor.I don't like the idea of them being so puffy. What research i did on the internet about it, says that extreme puffiness like i am having can be signs of a kidney or liver problem. Praying that is not the case. Thinking positive here. Hopefully i get some answers ! Wish me luck.
Amy, do I recall you saying you are diabetic?
Yes, Rani I am a diabetic. I know what you are going to say...you can get swelling with diabetes.
Well i went and saw my family doctor today..actually the physicians assistant who i really like.... and here is the scope :
My blood tests showed that my cholesterol levels were good. Yea !
My electrolytes were good. Yea !
MY kidneys and liver are fine ! Big relief ! Triple yea !
My blood sugar levels were excellent ! Yea !
So in other words they did not feel that my diabetes was causing the swelling in my extremities. Which really surprised me !
They think , because of the numbness, tingling, vision problems, and the tremors i get , that there is something neurologically going on and that i need to get in touch with the MS specialist in Rochester NY, which i have already done, and am waiting to hear back from.
I may still get a second opinion about my diabetes if the swelling continues.
so that is the latest news. Slowly, and hopefully making progress !
Sweetie, I'm so sorry you're having such a hard time getting answers so far! I'm glad they're trying to rule out everything, but I'd definitely want second opinions about everything if I were you!
Keep the faith, dear, and remember we're all pulling for you!!!
*HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS* *HUGS*
Thanks Rani. yea, as i have said before i am fustrated with my doctors here. Time to move on. Unfortunately alot of the specialists won't see you without a referral from your family doctor, or also if they are willing to see you, it take s for ever for you to get an appointment. But we are slowly making progress.
Even the doctor yesterday said i was a complicated case, cause i had so many different symptoms. LOL, yea..i was never one to do things the easy way.
Yes, I still don't buy the fact that my diabetes is not causing my swelling in my feet. I think i will still make an appointment with an endrocrinologist or diabetes specialist.
Oh belive me, I have learn to get second opinions !
Nope I think the best course of action would be to see probably both a neurologist and a diabetes/ endrocrinologist person.
Right now though i feel tired and worn out, so i am just going to rest and realx this weekend, and handle it on Monday.
I tell you, and it is sad to say, but it is the truth, my dogs and horses get better doctor service then i do ! Oh well ! keeping the faith and thinking positive !
So where you ever able to get any answers as to what is causing the swelling in your hands and feet from your recent doctor visit Amy?
Nope, other then they did not think it was my diabetes, which i don't totally buy for one minute. S o i am taking it easy this weekend like I said, and i will make a few phone calls next week.
right now i am relying on prayers and faith , which i know work. I am also busy reading my health books, and researching on the internet. Sometimes, you can't always rely on doctors. I am a strong beliver in that sometmes you have to heal yourself with some help from God above.
Like i said, i am not giving up. I am itred right now, so i am going to rest this weekend, and next week, after i figure out my next step, which will probbaly be to contact a neurologist, or an diabetes doctor, i will make a few phone calls.
Amy the main thing to remember is not to over do it and take it easy.
Update Monday March, 9
Hi everyone. I am Amy's husband. Amy had kind of a bad epsiode today, so I am asking evryone to keep her in your thoughts and prayers. I know how highly she talks of her friends on here.
anyway she was fine over the weekend, but then this morningshei had another relapse. She woke up with the worst headache she ever had.Although i don't know if headache would be the right word. She described it like extreme pain on the right side of her face, and then it felt like someone was taking their hands and pressing down real hard on the back of her head. She needed to use the bathroom and when she went to stand up, everything turned pitch black on her. She says she could hardly see. Our son was awake and he wanted the TV turned on. She claims she could hardly pick up the remote for the Tv. She was shaking hard and felt like she was going to pass out.
She called me home from work then.
When I got here, she was shaking all over,a nd her hands neck and back felt numblike. I asked her if i wanted to go to the emrgency room, but when she went 2 weeks ago by ambulance, all they did was hand her some pain meds and then discharge her, and billed me for a huge amount.
So I contacted the MS clinic in Rochester, New York that she had been too,a nd talked to the staff there. They had her records and previous tets on hand still. The doctor did not feel that her case is MS realted, atleast not based on the previosu tests from 2 years ago, but he did feel that her current symptoms deffinitely were cause for being seen by a general neurologist as soon as possible. So they were able to get her in on a emergency basis for this Wednesday. I know she does not feel up to a long car ride now probably, but i know she is willing to do whatever it takes.
She will probably shoot me for posting this, but as i said i know how highly she talks of evryone on here, and I know how your comments, thoughts and prayers are really appreciated by her.
Please don't try to call her right now, cause her sppech is abit slurred right now, but i am sure she would love renmail.
Will keep you posted.
Thankyou everyone !
Like I said before thanks for the update my friend. Please keep us updated and please let Amy know that she remains in my thoughts and prayers.
Please send her this hug from me as well.
HUG!
Thanks for the update!
We'll all be praying for her, sending positive thoughts, and renmails!
Let her know we're all thinking about her, and sending love, hugs and prayers!!!
Hi evryone..this is Amy. I'm still pretty shakey so excuse my typing. Oh my gosh, i did not realize my husband had posted. He did not say anything to me. What a shock , when i came on here. I know he is pretty worried about me.
Yea, I scared evryone today, including myself. It was not good. I literally could not see a thing, and then i blacked out for afew minutes. Pretty scary experience, and then i would not stop shaking all over, and my hands and feet were like ice to touch. So as my husband mentioned i have an appointment wednesday with the neurologist. shall start there and see what happens. Also have a name of a orthropdeic doctor and a endrocrinologist. taking it one step at a time here. I just want this behind me once and for all, for it is not avery pleasant experience especially when i start with the tremors. And the passing out is not fun either.
Thanks for the love and support, and prayers. Love you guys ! :'( :-*
Amy, just hang in there! ;)Hopefully tomorrow you will get some answers if not that and some means for relief :D
Yes, i am hoping i get some answers tomorrow. I am still having the numbness, and shakes today.
This has been going on long enough with me.I was so hoping when we found the tumor on my spine last year and hadit removed that was the answer, but apparently not.
So yes, hoping we can get some answers tomorrow or atleast get the ball rolling, cause i am anxious to get my life back to normal gain, plus i have to admit that i can't help feeling awkward and embarrass at times, at how long this has been going on with me. With all my symptoms, etc, I don't want anyone to start thinking I am a hypercondriac(spelling ?) or attention seeker.( ( not that anyone on here has said anything to me, but i had one so called friend that did ) Far from it ! I don't like passing out , and shaking all over, or seeing the worried looks on my husband or son faces.
No, i will be glad when i get to the bottom of this. I tell you i could write a book on my medical history. I has not beeen a dull one !
- Born with a very mild form of cerebal palsy that affected my balance on my left side.
-had several strep infections as a child that led to me having my tonsils out
--had bad, bad case of chicken pox
-broke my ankle three times
-broke my collar bone
-broken wrists
( joys of horseback riding and sports )
- dislocated my shoulder
--spent a year on intraveinous antibiotic treatment for Lyme Disease
-- shatterd my knee cap and had surgery on it
-had surgery to repair a torn shoulder
-had preeclampsia and toxiemia during pregnancy
-had emergency c-section
--had a botched up spinal tap where i leaked spinal fluid
--had a lung biopsy
-had thoracic surgery to remove tumor on my spine and near my heart
-diagnosed with type 2 diabetes and asthma
Need I say more ! Sigh !
My husband likes to tease me. He says when you buy an expensive horse you have it vet checked first for conformation, health, and soundness. He says that what he should have done with me ! Har! Har !
Thankyou evryone for the prayers and well wishes. Means alot to me and my family. Yes, hopefully this will be the year that we finally get to the bottom of all of this !I want to be back on my feet and feeling well by summer !
Amy don't ever feel like you can't vent on here. That's why we are all here to listen to you when you need someone to vent to. I will as always continue to keep you in my thoughts and prayers though.
God Bless you hon and please keep me updated on how you are doing as well.
Thanks Lord W. Well i leave in a couple hours to go see the neurologist in Rochester, New York. Hopefully we can get some postive results an d get the ball rolling and get down to what is causing all of this. Talk to you when i get back .
You are in my prayers Amy! Stay strong!
Don't let the doctor blow you off - you need to find out what's happening to you and have it resolved. Best of luck.
Great luck, dear!!! Don't let them put you off!!! Kick some booty if you have to, ok?!? Praying as hard as I can for you, Amy!!!
Good luck my dear. I hope you'll get the answers you need. You are in my prayers.
Hugs!!
Good luck hon. I hope you are able to get some answers and some relief from your doctor today!
Stay strong, we are all waiting to hear what the doctor said.
Thanks everyone ! Well I'm back from Rochester. Tired, and feeling a bit shakey today, but i will try to sum up what the dcotors had to say:
The university of Rochester is a big hospital.It is a teaching hospital. They have a huge neurological department.
Anyway i first met with this one young female neurologist . She had all my records and had reviewed them. She started asking me questions about headaches, and i told her my heaches are really mild ,a nd that that was not my cheif complaint. Plus they really are not headaches, more like pressure on the back of my head. She said oh, okay. i think she thought i was being seen for headches. I told her my cheif complaints were my blurred vision, passing out, the tremors/twitches, the numbness, and my balance getting worse.
So she asked me abunch of questions about my tremors.
Then i had brought my MRI films along, and she looked at them.
She said we could deffintely rule out MS for now. There were no signs of any lesions on the brian on the films that i had.
she did not feel that my tremors i have were from a seizure.
she said were some small marks on my brain that were indicators that i may have had a mild stroke at one time.
She did examine my reflexes. She could deffinitely tell that my vision was off and that my eys had a hard time focusing. Also that my balance was deffinitely off.
Then she stepped out of the room to go find one of the more experienced neurologists there. She walked back in the room witha slightly older female neurologist who introduced herself as one of the upper neurologists there
So the second neurologist checked my refelexes and looked at my films, and here were her thoughts :
1. She wants a updated MRI of my brain done because of the pressure i get in the back of my head, and because of my visual problems.
2. She was very concern about the tumor i had removed off of my spine last year, and questions wheter the tumor while it was still on my spine could have caused some nerve damage. So she wants of MRI done of my spine in the area that the tumor was located.
3. then i brought up the fact that when my thoracic surgeon removed the tumore last year he saw that i had two bulging diiscs. This neurologist said that the dics could have posiibly ruptured and orderd a third MRI to look at the dics on my spine.
so i am waiting for a phone call from the MRI place in rochester to tell me when i nedd to go have them done. How fun ! I hate closed MRI"s. You feel like you are in a coffin ! And then when they do one of the brain, they put this sheild over your face which makes you feel like you are even more closed in ! But somehow i always manage to make it thru them. Just once, i almost could not take it. But that time i was in the MRI machine for 2 hours, while they scaned my whole spine, which come to think of it is what hey want to do gain. YIKES ! oh well, i guess whatever it takes.
So anyway i am to have the MRI's done and they will call me if they find anything. otherwise i am not to see them again for another 6 months.
Now for the negative part. For some reason the second neurologist went on and on about nerve pain and hvaing me go to a pain management clinic which both me and my husband questioned cause i don't realy have pain. I have more numbness then pain.
Then she prescribed me some new pain med that is on the market for nerve pain. i
anyway picked it up a half hour ago at the pharmacy. Thank goodness i have insurance. Caused it would have cost me $200 if not. yes 2 hundred !
anway i am reading over the pharmacy info sheet on the medicine i was prescribed that was attached to my prescription , and it says on it:
Do not take if you are a diabetic, which i am. Then it says do not take if you have high blood pressure ( which i have ever since my preeclampsia when i was pregnant which my son) cause it can send your blood pressure quite high.
I was like " What the hell ?" ( excuse my language ). The neurologists had my med records. they knew i was diabetic and had high blood pressure.Thank goodness i took the time to read the attached med info paper ! So i called Rochester and my doctor was already gone for the day, but i will call again on Monday.
So right now i have mixed emotions over the whole visit. No deffinite answers, but it seems like they are trying to solve it with the MRI's. but not another appoinment until six months ? Symptoms can change alot in six months time ! and then prescribing me meds that could be dangerous for me to take. I don't know what to think !
So that is the scope for now !
Amy,
Wow. Most certainly call the doctor to verify that she intended to prescribe that med even though you had those condition. Sometimes they prescribe something hoping that you are not part of the small percentage that will have an adverse reaction. All in all, seems like the MRI's are key and I can tell you that in my case they were. I would request that you get a copy of the report in addition to the one sent to your doctor. Also, try and push for a sooner appointment and if you see the least bit of troubling info on said report that I would become a permanent caller every day demanding an appointment.
oh, i deffintely plan on caling first thing Monday. Even the phamacist ( not my regular pharamacist who knows my med history ) was shocked when i brought it up with her. she was surprised i was prescribed the med.
Yes, MRI"s can often be the key. After my incident with my tumor last year, ( where it was detected two years sooner, but i was not told about it,) ,i always ask for copies and records now.
Wow, at least you have a plan and some sense of direction. Kudos to you for being astute enough to read the docs you received with the prescription (so many people don't....assuming that the docs always know what is best), trust but be aware and as always do not be afraid to question.
Amy, I'm glad you're getting some action now, but I do agree that meds should always be questioned and confirmed! Too many times a doctor will make a judgment call that should really have been made by the patient, as to whether the benefit of some treatment outweighs the possible risk, without telling the patient the possible consequences of the drug... and I think that should be against the law!!! I'm glad you're insisting on getting answers before you take it, especially since you weren't asking for pain meds, anyway!
Remember, we're all thinking of you, and sending you much light and healing, dear! Take care of yourself, and rest when you need to. And keep an eye on the doctors, because they're human, like the rest of us, and not immune to making mistakes.
Feel better soon!!!
Rani you pretty much summed up my feelings on this whole situation. Amy always know that I will ALWAYS be in your corner and will be there for you whenever you need me. Please keep us posted on how you are doing. Love and hugs to you hon. :)
An update:
On Tuesday I called the neurological office cause I had not heard back yet on my MRI appointment. Find out that they were waiting for insurance clearance. I informed them that i have never had to wait for clearnce before with MRI's and the person i talked to said she would look into it.
Got a call this morning and I am scheduled for this Sunday ( they have weekend hours ) to have my MRI scans done of my brain and spine. Oh fun ! I hate closed MRI's. i get claustrophobic a bit. I have had MRi's before,and i always do okay, but it still gets to me abit. :)
And i need to inform them that the last time i had a incident with the contrast dye. My veins have a tendency to roll, and I poped the needle out, and the dye went on my skin, and gave me a mild chemical burn. Not fun ! but of course it was just a rare incident, but if rare things are going to happen, they often happen to me. LOL, I amybe Irish, but I don't always have the luck of the Irish.! ;D ;D
And then depending on how i am feeling we may stay a extra day or two in Rochester and just drive around , maybe have a picnicby the river or go down by the Erie canal. My husband thought it would just be nice for me to get away and relax, and forget about evrything for a day or two. So all depends on how i am feeling.
I went yesterday to a medical supply store with my husband, and got one of those folding walkers on wheels, cause i am having a hard time walking. The numbness is getting bad in my right foot and leg and it really throws my balance off.
So that is the latest.
hanging in there. Trying to think postive, saying my prayers, keeping my sense of humor and praying that we get to the bottom of all of this soon.
I'm glad you're scheduled for the MRI and that you're now savvy enough to check your meds. It says a lot that you more familiar w/your needs than both the doctor & pharmacist. Make sure to wear some enclosed shoes w/a good sole. I'm sorry that your condition has worsened and am hopeful that the doctors will be able to diagnose & give you the proper treatment.
Have your picnic, even if it's KFC - those little treats are what get you through and what make life worth living.
I agree with you Taffy 100%. It's like you were reading my mind and said what I was gonna say. Hang in there Amy and know that we are here for you when and if you ever need us.
Hugs and love to you hon. :)
Thanks everyone. Hugs and have a great weekend ! See ya when i get back.
Lady Amy. I wish I had seen this earlier. I am 40 mins from Rochester. I wish you the best!
irish
Amy, I'm so glad you're keeping up your spirits, and I'm sending you hopeful and healing energy, and prayers for enlightenment so you can finally know and treat the cause of you condition, whatever it is! Take care, dear, and keep yourself steady!
Enjoy your picnic... it sounds lovely!
Well now Amy, so much for the both of us pulling it together huh? Keep the faith hon, I get up in the morning and thank the powers that be that i am on this side of the dirt for yet another day. I too understand your frustration, since no one ever has a "pat" answer for anything.
You are in my prayers hon...*hugs*
Quote from: Lady Amy of York on March 21, 2009, 01:10:07 AM
Thanks everyone. Hugs and have a great weekend ! See ya when i get back.
M'lady
I am not a physician, but based on what you have described of the ones that have worked on you, I think I could have done better and I only have 4 years of medical training and it was a long time ago. the numbness in your feet, does it feel like your feet are just going to sleep or does it feel like someone could perform surgery on them without anesthesia and you would not feel it. Did any of your physicians suggest to you that, that particular symptom, could be from your diabetes. I say that because while I do not have your other symptoms, I do have diabetes and my feet tend to feel like they are going to sleep. My physician thinks it may be siatic nerve related. Not offering advice mind you, just making suggestions for you to ask your doctor. Get well soon.
Irish- maybe if i get up to rochester again, we can meet somewhere. We will deffinitely catch each other at faire this year.
Rani- thanks for the well wishes.
Deborah-- LOL, sis, i know what you mean. Hugs back to you.
Blakduke- I deffinitely think my feet are due to my diabetes. Sometimes the numbness is like some one could do surgery on them an d i would not need anesthesia, other times it is all tingle like, other times it feels like i step outside in the snow without a warm pair of boots on, and other times it is a numbing ache like when you break your ankle.
They swell up alot too on me.
I asked my family doctor about it, and was told to speak to the neurologist about it. When i showed the neurologist in Rochester my feet and hands, she said she did not feel it was diabetes or neurological but that it was due to my kidneys or heart related. I don't buy either one. My recent blood tests showed my kidneys were working find, and before my surgery last year, i went and saw a cardilogist and he ran some tests on me to make sure i was strong enough for the high risk surgery i was having, and i passed.
So i have read enough about diabetes to think it is my diabetes.
There is a place in Syracuse , New york, called the Joslin center for diabetes and endrocrinology that i am thinking about contacting, cause i really don't like the idea that i am continuing to loose feeling in my right foot, and the fact that my feet, hands, face, are so puffy i don't look like myself.
AS for my trip to Rochester evrything went well. had anice ride there on saturday. Me, my husband, my son, and the three dogs ! ( the local kennel was all booked up for spring break, so we found a kennel in Rochester ). Stayed at a very nice hotel overlooking the Erie canal.Pretty.
Sunday i went to the hospital for my MRI"S. I did not need the contrast dye which i was happy for. My veins have a tendency to roll and the last time i popped the neddle and got a burn on my arm from the dye.
But did not nedd it this time.
I was in the darn machine though for 3 hours. ! Fun, especially since i do get abit claus rophobic, but the staff there were very nice.
So i am only suppose to hear from the neurologist if they find something. she said no news is good news. But i plan on calling them next week one way or the other !
I can kick myself though, cause as i am sitting here typing this, it just dawned on me that i totally forgot to ask the MRI place to send me copies of the MRI report. Well i will just ask for copies from the nuerologist.
Monday we drove around and had a picnic. Nice and relaxing.
Yesterday my husband took my son to the science museum and the play museum there. he loved it. I relaxed in the hotel room. We got the dogs and headed for home today.
I am a bit pooped, but nice to get away and have a change of scenery and take my mind off of things a bit and have some time as family together.
So we shall see what the MRI's show. In one way, I could say, i hope they don't show anything, cause i don't want there to be anything wrong, but yet ,on the other hand, i want them to show something, cause if they do show something, then maybe we can finally get some answers and diagnoses.
Amy I'm so glad your back and glad to hear that you had a wonderful trip. You still continue to be in my thoughts and prayers love.
Hugs to you! :)
Good that you are back and that for all intents and purposes the trip went well. In terms of the MRI's, I think you can call them and ask them to send you the copies. I can say I kind of know how you feel about the results thing. I still don't have my results but in my case I fear they will show nothing because I know that this is not normal and I would like an answer but this is about you not me. Just hang in there Amy! You know we are all behind you ;)
Happy to hear that you're back home and had a decent trip. Hang in there and know that there are a lot of people pulling for you.
Today was a bad day. I was in the worse pain i have ever been in with my back. Thank goodness i still had some prescription Vicodan in the house from last year when i had my sugery. I'm not for one to go throwing down prescription pain meds( i'll take tylenol, or Aleve ), especially ones from last year, but i was desperate.
I did not want to go to the emergency room. For one i could barley move and get out of bed, so I spent both of the day in bed cause i could not even move without being in pain. On a pain scale from 1-10, 10 being the worse it was a 10 plus !
Sitting here now with the laptop in bed, trying to keep my mind off the pain.Not as strong as this afternoon, but still uncomfortable. Hoping to get sleepy enough so i can fall asleep. I don't want to take another pain pill, but I might.
I had my husband call the neurologist in Rochester today and he spoke to the receptionist. He asked if they had received the MRI reports and was told that they did, but that he would nedd to speak to the doctor. He asked if the doctor could call us, but we never heard anything.
Being that this is a hospital that the neurologist i am seeing is at, i am sure that they must have a neurologist on staff on the weekends. so iam going to try calling there gain tomorrow and seeing if someone could tell me if anything showed up in my spine on my MRI's. Wondering if one of the bulging discs that i supposedly have could be pressing on some major nerves.
anyway, trying to think positive, etc.. Some days are harder then others, but i am determined to lick this. I just feel beaten down right now. I can tolerate pain, but not like what i had today.
Thanks for all the prayers thoughts, hugs, laughs. They really help keep me going. You guys/gals are the greatest !
Honey, I'm so sorry you're hurting so much! I wish there was something I could do for you... I'm glad you're keeping after the docs, though, because it seems like they never volunteer info, you have to drag it out of them! I'm praying that you'll find out what's going on in the next day or so, and that it turns out to be something fairly easily fixed, dear!
Maybe you need to ask hubby for a massage so you can relax enough to sleep?
Try to get some rest tonight! You're in my thoughts...
Thanks hon. Yea, i had my husband Tim try to massage my back earlier, but it hurt too bad, for him to even touch it. I'm going to take a pain pill and try to get some sleep.
and if it is not better tomorrow i guess i will have no choice but to go to the ER, cause i can't even stand up, it hurts so bad.
and if not tomorrow I will deffinitely be pestering the neurologist on Monday to get my results.
I tell you, it is times like these you appreciate the good days. What keeps me going is my faith, and my family and my friends, and i think of our brave men and woman laying in army hospitals, some of them in much more pain then i am .
Sorry to hear that you are hurting so much, and, also, wish there was something I could do to make things better.
I hope things take a turn for the better.
It's good to see you staying positive. Keep it up. You have a lot of prayers coming your way. Peace and blessings with lots of hugs!
Thanks everyone. Yesterday when i woke up the pain had subsided enough that i was able to stand up, and walk about without being in agony, which i was grateful for, cause friday was no fun at all.
Today though when i woke up though the pain was back. I did try caling the neurologist office yesterday and just got a answering service so i will call tomorrow.
Yes, i am trying to think positive, but this is really starting to get to be a royal pain in the you know what. It really hurts. I want my strong body back . I played sports in highschool, i danced, horseback rode. Ugh, now look at me. sigh ! :'( :P
I ready to scream, shout and cry right now. I have been in pain since friday with my back. I have placed several calls into my neurologist requesting someone call me and no calls back, so finally just now i called gain, and refused to hand up until i talked to someone.Finally got a doctor to talk to me.
Very, short, brief coversation. She was talking so fast, i could barely get a word in.
the bottom story...she said the brain scan was fine, and the spine scan showed nothing that she could remark on. We will see you in September for your follow up.
I said what about the bulging discs.
she said there is no mention of them here.
i said i have cat scans here showing them and was wondering if they couldbe causing the current pain i am in.
( even my thoracic surgeon who was voted one of the top 20 saw them last year and said i could have problems with them down the road. But at he time we were dealing with the tumor on my spine... ) i did not say this to her, but felt like it .
i told her i was taking codene to get thur the pain. i can barely stand up. I am not making this up. i m in alot of discomfort and would like to know if anything showed up on my scand like the bulging discs. I said even my husband placed a call to the office telling them how much pain and discomfort i was in.
Her reply was well we shall see you in september for your follow up appointment.
So basically it was like i got the brush off from her.
True it was 5pm and she may have been in ahurry to get home , but still, is that anyway to treat someone.
so i am ready to scream and cry at the same time. That was the whole coversation. Very short. did not seem to care that i was in pain.
and the pain is real. If i could be up and about walking about i would be. Arrgh ! Scream ! scream !
**********************************************************
okay, i am done ranting, but i am still fustrated. the only reason i went to this neurologist is because both my family doctor and the MS doctor i had seen both felt that there was something major neurologically going on and that i needed to be seen and treated by a general neurologist right away.I keept saying maybe it was orthropedic, but they kept saying neurological.
So now to unwind abit, talk to my husband, and decide our next step.
******************************************************************************
okay so I guess i can say it is good news that the brain and spine scan showed nothing. But on the other hand, i still have no explanation to what is causing the tremors, numbness, and now the back pain.
and one could also say that i could cross off neurological problem for now, and start looking at either orthopedic, diabetic or hormone, or chemical.
But i am still a bit annoyed that the doctor kind of just gave me the brush ooff when i told her the pian i was in.
Well, as i have leraned there are doctors and there are doctors. Some can be very compassionate and understanding and others...
Then again, there are some doctors with terrible bed side manners but yet they are very good doctors.
Anyway, i know the tremors and numbness i get is not normal. You don't just start shaking for no reason. You don't pass out for no reason. You don't get pain for no reason. There has to be an answer.
It's just when am i going to get that answer.
I'm not a baby. I can tolerate alot of my symptoms, and i do on a daily basis, but still i would like to know what is causing all of this.
I am trying to think positive, but right now i am very fustrated.
:o Omg, Amy. I'm so sorry to hear that you are hurting so badly. I was getting very angry reading about how short the doctor was in her conversation with you about your reports and for not acknowledging your pain.
Many hugs and prayers for you.
I totally agree with Celtic Lady on this as well. Just from reading your post about the pain you have been in Amy I was getting a little miffed myself at it as well. How can this woman look in the mirror and call herself a doctor when just by the conversation you brush you off the way she did. UGH! Anyway I'm sorry about my little rant cause this is not about me it's all you honey. Amy just know that you are still in my thoughts and prayers as always and if you ever need someone to talk to or someone to blow off some steam to don't be afraid to send me a ren-mail.
Hang in there cause I believe in my heart that the answers you have been searching for are on there way to you.
Hugs and love to you lass.
Thanks Celtic lady and Lord W. Yes, it has me pretty angry too, but i am trying not to think about it, cause i know stressing out won't help.
I'm going to request copies of the MRI report cause i have learned from past experience not to trust dcotors all the time. Sad to say. But my previous neurologist that i use to see told me there was nothing that showed up on a MRI report. Thankfully i asked for copies of the report otherwise i would have not known about the tumor i had my spine.
Then when i saw my thoracic surgeon last year for the surgery to remove the tumor he asked for my MRI reports and said did you know you had bulging discs.
So that is twice that something showed up on my MRI's and my previous neurologist did not tell me about it.( the reason why i switched neurologists, but this new one does not seem much better. Lol, why do i pick all the winners ::) ) So i am going to ask for copies of this latest report so i can make sure nothing has been overlook.
Amy hang in there girl cause like I said before I believe that the answers you have been looking for are on there way.
I'm glad you're looking for second opinions, and even third! It's important to get all the info you can, and then some. Keep pushing until you get an answer, dear! Thinking about you, and sending lots of healing energy!!!
Also glad to hear that you are pushing for second and third opinions.
You are your own best advocate. Like Rani says, keep pushing til you get an answer.
keep your chin up... don't let them bring you down... stay positive
Though it seems like we arte not the lucky ones in terms of doctors, it is up to us to keep fighting. Don't give up until you get an answer.
Ditto! You remain in my prayers Amy.
thanks everyone ! I called the neurologist office today and the lady i spoke to said she would put a cd in the mail tomorrow with the MRI pictures on it,
I told her I also wanted the reports, she said that was a seoerate office that handled that and gave me the number for it. So i called and the woman said i had to send them a special request letter , and went on to tell me what to say in the letter, and then when they recive the letter , they will release the reports.
On brother! But i guess they have to be careful. I guess anyone could call up claiming to be me and ask for my reports.
So anyway, hopefully it wont take too long to get them and then i will take it from there.
In meantime, i am trying to take it easy , casue they ain't much i can do with my back. Fustrating, when i think of how much i want to get done around here, but it can wait for now.
So i continue to keep my chin up, but will be glad when i finally get some answers and get back on my feet again. Hopefully this time for good ! :)
Amy as always you remain in my thoughts and prayers.
just a quick update.
I'm hanging in there. I'm still getting numbness and tingling in my face, hands and feet, but i'm not letting it get the best of me.
Still have pian in my back. But i can sit up in bed or a chair better then i was able too.Atleast to some degree. I do alot of gritting and bearing of my teeth, that plus i have a pretty high pain tolerance level, which could be good or bad ! :)
i have even managed to get up and walk around for a bit around the house. yea !
I can only do it for short intervals though, like only a couple of minutes, cause then the pain starts to get to me and i get shakey.
But it beats laying around all the time.
I got the MRI films back. Unlike some of my other MRI's these were hard for me to interpret. I am waiting for a copy of the written report.
So that is the latest here.
taking it one day at a time. thinking postitive, keeping the faith and counting my blessings.
Amy hang in there girl and know that we are all pulling for you on here.
Hugs and love to you. Keep us posted on how you are doing hon.
Thinks Lord W.
I actually managed to get up today and walk about some more. matter of fact right now i am siiting in a chair at my computer desk. First time in days. Yea !
I do notice though that when i am sitting up, or standing up that it brings on the numbness and tremors more. Ugh ! But i could not continue to lie around in bed. For one i don't want my muscles to go weak on me, a nd two i was going stir crazy !
But i am hanging in there and thinking optimistic. waiting for the written reports of the MRI and then i will decide where to go from there.
Right now i am focusing on enjoying the Easter week with my son ! although if i looked out my window it looks more like winter then spring. Snowing like crazy here !
If i don't post again before this weekend...Have a happy Easter everyone ! :)
Amy the main thing right now is that you are getting better which I'm glad to hear. Don't overdo it though.
Please let us know when the written reports you are waiting for do come in. Hugs and love to you.
Amy, I'm praying daily for you to start healing, and for your pain to ease. Take care of yourself, dear, and enjoy the holiday!!
Thanks Lord W and Rani !
Mentally and emotionally i am doing alot better. I'm not so fustrated over all of this happening again. Well, yea i guess i am still fustrated, but i am thinking more optimistic. I mean, it was abig blow to me when this all first started again, but i am thinking positive, and optismtically, and putting my trust in the Lord above.
Physically, i have a ways to go yet, but yes, i will take any little approvement/ progress i can get.
shall see what the reports have to say when i get them, but i am also focusing on trying to heal myself thru diet, proper nurition, healthy vitamins and supplements, healthy herbs, and exercise. I am a strong beliver in alternative medicine, as long as you do your research and know what is safe and what is not.
Amy I believe in my heart that your time for healing is coming. I believe that it's on it's way right now why cause I claim it and I am putting my faith in the Good Lord above that it is on it's way. You are such an amazing and strong woman and have been such an inspiration to a lot of us on here so don't give up cause as always we are all pulling for you cause that's what fairemily is for you know.
You remain in my thoughts and prayers as always. Hugs and love to you lass.
Quote from: lordwriothsley on April 10, 2009, 06:39:34 AM
Amy I believe in my heart that your time for healing is coming. I believe that it's on it's way right now why cause I claim it and I am putting my faith in the Good Lord above that it is on it's way. You are such an amazing and strong woman and have been such an inspiration to a lot of us on here so don't give up cause as always we are all pulling for you cause that's what fairemily is for you know.
You remain in my thoughts and prayers as always. Hugs and love to you lass.
Thanks Lord W. Thanks for those wonderful kind words. Yes, i do believe that my days of healing are around the corner. I had good day yesterday, and so far today is going pretty good. yea !
Plus i received a beautiful present from my mom and dad today that brought tears to my eyes and touched my heart deeply. . They are having a weeks worth of Easter novenas being said for me by the Franciscan monks . So i know I am in good hands !
That is such wonderful news Amy. I'm so glad to hear that. Happy Easter to you, Tim, and your son.
Hope evryone had a happy Easter. :) Mine was nice, spending time with my son and husband. The easter buny hid plastic eggs with coins inside and my son enjoyed hunting for them.
Well, i think i may have spoked too soon about feeling better.
As i said i had two good days Thursday, and Friday, where i was able to get up and walk about with no pain.
Then on Saturday, I woke up with some pain, but i had promised my son I would do Easter stuff with him, plus I am determined not to baby myself , so I got up and sat on a chair in the kitchen and we dyed Easter eggs, and frosted a cake.
Sunday i could tell i had overdid it abit, so we had a relaxing, restful Easter sitting around watching Easter video's on the tv.
Yesterday i woke up feeling better, but then last night after dinner, i started with the tremors, shakes, numbness, dizziness and back pain again.
This seems to be the common pattern here. Whenever I start to feel better, and start being active, my symptoms come right back again.
So it is back to finding the cause of all of this. I have a couple routes/ ideas i am investigating,and in the meantime i am trying to think postive and keep the faith, and also remind myself not to overdo it . :)
On the bright side, it is a lovely day out and i can look out the window and see my daffodills in bloom, and I have my son here keeping me company, and my puppy at my feet. :)
Amy I'm very glad to hear that you had a nice Easter with your husband and your son but like you said before don't overdo it cause that is the last thing you want right now.
Hugs and love to you Hon. :)
What a week. What is the saying," It never rains it pours ." Have you ever had one of those weeks when you should have stayed in bed? Allow me to vent.
Monday: My back was bothering me and since i still had not received the wriiten report from my last MRI i had done in Rochester, I decided that I could atleast go and to te local MRI place here in town and get copies of all my previous MRI"s. So i did that. Was reading thru the reports on the ones done on my spine and found a report from 3 years ago when i was seeing the neurolgist that i know longer see, and it mntions bulging discs and heniated discs.
So that is twice now that ,that neurologist kept info from me. First the tumor on my spine and near my heart, that nearly killed me, and now the discs. I was furious ! >:(
Tuesday-My husband gave me quite the scare. He was out taking care of the horses after diner and came in complaining of pain in his chest , shortness of breath and pain down his right arm. I called 911. Thankfully it ended up not being heart related. Thinks that he lifted something too heavy in the barn, but it was enough to scare the heck out of me.
Wednesday- Finally got the wriiten report on the latest MRI i had done. If you recall the neurologist i talked to on the phone said nothing showed up on the MRI and to come back in six months. Well, i would like to honestly know where se learned how to read.
Because right in black and white on the report it states that they fond some small scars on the brain common in either MS or a stroke.
Oh, and when i had asked her about my spine and wheter it showed any bulging discs she had said there was no mention of the dics at all. That was a bunch of Bufalo butter, cause once gain right in the report i mentions bulging dics, herniated discs, and something about the spinal canal.
UGH, so it makes me lose all faith in neurologists ! don't get me wrong, i am sure there are some good ones out there. :-\
Then to top the day off the puppy got loose on us. Could not find her anywhere. My husband and son went searching for her. we have about 8 acres, half of it being wooded. We get coyotes, etc.
Finally after a hour of searching they found her.
So just when i thought that was enough for the week, it just got better and better.. :P :'(
Thursday : Last week i had faxed a request to well known diabetes and endocrine center in Syracuse. I listed my symptoms, and said i was wondering if any of them could be diabetes related or hormone realted an would like a consultation with one of the doctors there. I had not heard anything back, so i decided to call. Talked to receptionist there, and the earliest they could get me in was sometime in August. ARRRRRRRGH ! >:( :'(
Friday: I just took it easy.
Saturday: I ended up going to the emergency room by ambulance, cause I had one of my fainting episodes. Diagnosis: dizziness. Gee, no kidding. How about telling me why it happen ? ::) ::)
Sunday : At bedtime my 5 year old son started running a 104 fever. Great, this kid never gets sick. Called his doctor, and was told to give him children's tylenol, check him every two hours and call them in the morning. if the fever goes higher during the night to take him to the emrgency room. :( :o :(
checked him a hour ago..down to 100
Mondaymorning 2: am--- so here i am , can't sleep. keep checking my son. Also thinking about my dad. My dad is having surgery today. He is having knee replacement surgery. Normally i would not be concern except for the fact that he is in his early 80's and is a heavy cigar smoker.
So between, my son and my dad, and i am tossing and turning here.
Saying prayers for both of them.
On the positive side, i am, up and about and walkng around, and able to do afew things around the house. :) Just can't bend or reach for anything. I still tire easily. i still have some backpain and some numbness . The biggest concern is the dizziness and fainting spells, but i am taking it one day at a time. I am convinced that it is up to me and God to get me back on my feet. I am focusing on eating healthy, taking my healthy vitamins and suppplements, and exercise, reserching alternative treatments, cause i have had it with doctors for now !
So that is the latest ! Thanks for allowing me to vent. :) Never a dull momment around here, that is for sure ! :)
Amy there is an old saying that goes "In each life a little rain must fall". We all have good weeks and bad weeks but the thing to remember is not to let the bad things get the best of you. I have said it before and I will say it again you are a strong and amazing person and such an inspiration to us all. Hang in there girl cause like I have said before I have faith in you that in the end everything will be just fine.
You are still in my thoughts and prayers as always.
Sorry you had such a bad week, I hope things are now on the mend for you and your family. Praying for you and your family. Lady Serena
So far things are going well this week. ( Knocks on wood ;D ;)).
My dad's surgery went well.
My son's temperature was down below normal today and the doctor felt that he just had a 24 hour virus. Still making him rest and take it easy today.
As for me i am taking a break from doctors for now. I am relying on my faith in God, the power of prayer, friends, and family, and focusing on healing myself thru diet, exercise and vitamins and healthy natural supplements.
Amy, so sorry to hear about the rough week you had. Glad to hear that 2 of the guys are doing better. Do let us know how your dad is doing.
Amy I'm so glad things are looking up for you. I hope your week continues to get better and that you get to feeling better as well.
God Bless you as always.
Thanks Lord W !
Well, by a small fluke, i may have found out one of the things that is going on with me. A nurse from the emergency room at the hospital i went to on Friday just called me. They got the report back from a urine test they did on me. ( it takes five days for ahospital to get a urine report. Yikes ! ::) ::) )
Anyway the report shows that i have ahuge amount of Ecoli in my system.
Don't know wherei picked that up from, but who knows it could be causing some of my symptoms. So they were calling the local pharmacy here to get me on some meds for it.
Like I said, never a dull momment around here. I maybe Irish, but i think the leprechauns are mad at me, fo i sure don't have the luck of the Irish lately. LOL ! Oh well, what is the saying," With evry bit of sunshine, a liitle bit of rain must fall !" See, atleast i still have my sense of humor working ! ;D
Well that is good to hear. At least you know you may have found the cause to some of your symptoms. See what the power of prayer can do Amy. :)
Ain't that the truth. I am a strong believer in prayer. I have witnessed over the years the powers and miracles of prayer. Myself and my son would not be alive today if it were not for prayers and the miracles of the Lord above.
Amy anytime you need someone to pray for you you know where to find me. Don't ever forget that. :)
Started on the medicine for the Ecoli. it is a very strong antibiotic and is making me feel yucko, but i need to get rid of the Ecoli in my system.
Amy dear you still remain in my thoughts and prayers as always. Please keep me posted on how you are doing and the progress you are making on getting rid of this Ecoli in your system
Interesting, well hopefully getting rid of the e coli will bring some improvement.
You've had a busy few weeks. Happy to hear that your son and dad are doing better.
Update : May 15, 2009
I have been focusing on trying to heal myself thru diet, exercise and taking vitamins and supplements.
I walk everyday, and also work out to the WII Fit program for the WII game console. I take daily vitamins and supplements to help with my circulation, diabetes, blood pressure, and metabolism. So far so good.( knocks on wood, cause i don't want to jinx myself.)
I'm up and about and active. Although my energy levels are not that high, and i still get some tingling and still have numbness in my feet and some pain in my back, but nothing that i can't handle.
So i am hoping that i am making progress, cause this has happen to me before. I'll be feeling better and making progress and then all of a sudden my symptoms will act up again.
So only time will tell. Hoping and keeping fingers crossed.
((hugs))
Wishing you the best! :)
Hang in there Amy we're still pulling for you through this.
Hugs to you my dear.
Thanks Lord W and RenRen. Yes i am determined to beat this, what ever it is. Like i said i still get the numbness in my feet, but i hve bben told i have some nerve damage in my feet, so that may be something i will just hve to put up with. I try to walk evry day to improve my criculation.
My balance is still pretty bad, but i am doing balance exercises to help improve it,if i don't kill myslf in the process. ;D
I still get tingling and in my hands and tremors in my face, and some blurred vision and dizziness but i am hoping and praying that if i continue excercising and dieting and taking the vitamins and supplements that things will improve.
I am constanly reading and doing research on health and nutrition and vitaimins and supplements and natural cures nd i feel that it may be the best way to go.
Speaking of that i went thru my medicine cabinet today and literally thru away about 50 prescription bottles of pain meds that the doctors have prescribed to me over the last two years. Most of them I had not even open and used, cause i did not want to take all that stuff. It is toxic to your system and can be addicting. But it just shows you how freely, and willingly doctors are to hand out pain meds today. Half of them don't evn bother to listen to your symptoms. they jsut hand you prescriptions for more meds.
It is pretty scarey when you think of it. Thank Goodness i had the smarts not to take most of it. I mean who knows what all that meds could have done to me. Heck, i may not still be around. That stuff can be toxic and if mixed with other meds can be deadly at times.. It just makes you want to shake her head . Wonder about the medical world today.
So anyway i am sticking to excercising, eating healthy and taking natural vitamins and supplements for now.
Amy the main thing is is that you are taking the right steps to cure yourself of this illness and for that we are all still very proud of you.
Hang in there lass. You are still in our thoughts and prayers.
JULY 9"TH_UPDATE
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A couple of weeks ago when i went to see my family doctor for my regular checkup, he asked how i was feeling, and i told him, how i was still getting the numbness and that the tremors were coming back, and that i felt tired all the time.
He ran some blood tests and it showed that i was slightly anemic so he put me on iron supplements.
A few days later i get a call from his nurse saying that the doctor saw something in my blood work he did not like ( she did not know what per say ) and wanted more blood work, and also some stool sample tests and urine tests cause they thought i might have blood in my urine and stools.
So i was very anxious the last two weeks . I know blood in the stools can some times be a sign of colon cancer or something serious.
But my tests came back yesterday. My stool samples were fine. I almost burst out in tears of joy. I have never cried over poop before !! :)
My blood tests did show that I'm a very, very anemic which could maybe be the cause of some of my symptoms.
So looks like maybe we are starting to get some positive answers for a change ! :)
Lady Amy, that is FANTASTIC news! ;D
I know how long you've been waiting to have anything concrete to go on, and I can only imagine what a relief it must be to know what may be causing your symptoms.
HUZZAH! ;D
Amy I'm glad that you are finally starting to get some answers that you have been waiting for for so long. I can't imagine how much of a relief this must be to you right now to know what is finally causing some of the symptoms that you have been dealing with all this time.
Like I have said before the main thing right now is to take care of yourself and take things one day at a time and not overdo it. You still however as always remain in my thoughts and prayers my friend. Please continue to keep us updated on how you are doing.
God Bless you and be with you as always Amy.
Oh Amy, I'm so sorry I haven't been here in so long! Somehow my new post notification for this, and a few other threads, had somehow been turned off... But I finally found it again!
I'm glad your doctor is still looking, and that you're getting some answers. Wouldn't it be wonderful if it were just a case of anemia? Even if there's more to it than that, at least getting more iron will make a difference in the way you feel!!! I hope you start noticing a change right away, dear... :)
Take care, hon!
Hugs and blessings,
Rani Z
Amy, so happy to hear that you are starting to get some answers. I understand about tears of joy over poop.