Clean brain scan, but Optic Neuritis and other symptoms

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aggiemom
New Member


Date Joined Aug 2008
Total Posts : 7
   Posted 8/25/2008 12:40 PM (GMT -6)   
Hi, I am new to this board and on July 4th I was diagnosed with Optic Neuritis.  I went on Prednisone and the next week had a flurry of symtoms that were all MS-like, including weakness/numbness in my left leg and arm, hot/cold sensations, a little vertigo.  My spine drives me absolutely nuts tingling.  Then the weakness cleared up and I started getting a little off balance.  But it is only slight.  I am still having trouble.
  My fatigue is so debilitating that some days I can hardly take care of my young children.    I should add that 7 years ago I experienced numbness in both of my feet and tingling in my spine, and it lasted several weeks.  I never got it checked out.  I also had another episode 3 years ago with numbness in my left leg, but it only lasted a day. And extreme dizziness during one of my pregnancies. (lasted a day)
  I have had a clean brain, spinal, and neck MRI.  I have met with a neurologist who says I only have a 20% chance of developing MS. He has good credentials, but I don't know how much experience he has with MS.   I have read a book on Multiple Sclerosis cover to cover and I feel as though it describes my life. 
  My doctors don't seem real concerned, and keep going back to that 20% number.  I understand that is the stat for people experiencing optic neuritis with a clean brain scan, but what about the other symptoms?  I have already been tested for Lupus, Devics disease, my thyroid has been checked.  They don't really want to hear from me until these symptoms stop and it happens again.
  In order to get a better opinion, I will probably have to go out of town, out of network, pay out of pocket.  Not mentioning that I have 3 young children and will have to find a place for them while I do all this.  I would go if it is worth it, but without a single lesion can anyone really do anything but wait?  And even if (long shot) I get diagnosed, would someone without lesions be put on the meds?
 
Thoughts?  Thanks in advance.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3538
   Posted 8/25/2008 1:41 PM (GMT -6)   

aggiemom,

Welcome to the forum.  I am sorry to hear of your troubles.  I am impressed with your symptoms.  You should be rightly concerned even with a clear MRI.  Of course I am not a doctor and there are many illnesses that mimic MS.  You can be diagnosed without lesions.  It is rare of course.  But many doctors feel that some people have lesions too small to be detected by MRIs.  If you can at all manage it, I would look at getting a second opinion by an MS specialist.  I know that this may be a hardship with your little ones and your insurance but certainly look into your options. 

I hope you feel free to stay and ask questions.  You are welcome to post here as often as you like.  Good luck in your quest for answers.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 8/27/2008 6:27 AM (GMT -6)   
September 22nd
 
Dear Aggiemom:
 
You  know, in the "olden days" (pre-MRI), this is the way docs used to diagnose MS.  By clinical observation.
 
May I suggest you contact your state MS Society for a MS-specialist neuro.  They also have much info about MS symtoms and diagnoses.
 
Great, great luck.  You can now see why they call it the "practice" of medicine.
 
John
 
 
DX'ed June 21st, 1987
 

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