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prayers,hope,faith.....

Started by Lady Amy of York, February 18, 2009, 06:05:50 PM

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Lady Amy of York

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  !
Lady Amy of York/CaptainAmy of FeistyLady pirateship
Cheiftess Feisty of Clan O' Doinn
HF:Sterling

Lady_Glorianna

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.
Lady Elizabeth Poyntz
Ynez de Leon
Catherine of Austria, Queen consort of Portugal
Molly Blair

Lady Amy of York

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.
Lady Amy of York/CaptainAmy of FeistyLady pirateship
Cheiftess Feisty of Clan O' Doinn
HF:Sterling

white trillium

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.
Everything starts as somebody's daydream. ~Larry Niven

Rani Zemirah

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 - Fire Goddess

Aut disce... aut discede

lordwriothsley

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.  :)
Irish Penny Brigade
IBRSC# 1584
Part Time Noble
Full Time Rogue
Overall Ren Geek
Man of many names
"Did I say that"

Lady Amy of York

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.
Lady Amy of York/CaptainAmy of FeistyLady pirateship
Cheiftess Feisty of Clan O' Doinn
HF:Sterling

Taffy Saltwater

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.
Sveethot!

lordwriothsley

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.  :)
Irish Penny Brigade
IBRSC# 1584
Part Time Noble
Full Time Rogue
Overall Ren Geek
Man of many names
"Did I say that"

Lady Amy of York

Thanks  everyone.  Hugs  and  have  a great weekend ! See ya  when  i get  back.
Lady Amy of York/CaptainAmy of FeistyLady pirateship
Cheiftess Feisty of Clan O' Doinn
HF:Sterling

irish

Lady Amy. I wish I had seen this earlier. I am 40 mins from Rochester. I wish you the best!
irish
irish~ren ~
Cruise Director ~
Clan O'Doinn (Sterling) ~
Irish Penny Brigade (New York)

Rani Zemirah

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!
Rani - Fire Goddess

Aut disce... aut discede

Deborah

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*
If all is going well, you've obviously overlooked something!

BLAKDUKE

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. 
Ancient swordsman/royalty
Have Crown/Sword Will Travel

Lady Amy of York

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.

Lady Amy of York/CaptainAmy of FeistyLady pirateship
Cheiftess Feisty of Clan O' Doinn
HF:Sterling