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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3012
   Posted 3/16/2009 9:23 PM (GMT -6)   
Hello all,

I usually post over at the chronic pain board. To give you a very brief run down, I have been having severe pain, as well as visual & functional disturbances in one of my eyes following a traumatic injury just over two years ago. No one has been able to identify the source of the pain, nor other symptoms, although we do have some pieces of the puzzle, including a recent MRI which revealed a gross enlargement of the optic nerve of my affected eye. The MRI was done back in January. Previous MRI's had not showed anything, but they were also done on less sensitive machines. The MRI also included a full scan of the brain, and at that time, did not show any lesions. However, in the last several weeks, the function of my eye has gotten drastically worse. I am having major tracking & pursuit problems in the eye, as well as problems moving the one eye in general. My ophthalmologist said that all these recent symptoms are signs of brain stem involvement. He is concerned about MS, although he said that it would be an atypical presentation (due to the pain), and the fact that I do not have any other symptoms & my most recent MRI was clean. He has been concerned about MS in the past as well, but we had ruled it out. I did see my neurologist again, who did not think that it was MS, because the rest of my neurological exam was okay -- only the neurological exam for that one eye is abnormal -- & my MRI was okay (although, I am wondering if something hasn't changed within the last month, because the functional issues all came about so suddenly). But she also said that she could not tell me much because she did not know enough about my specific neurological eye problems. I need to see another neuro-ophthalmologist, however, I did see another doc today, with a lot of background in neurology (although not a neurologist), and after review pretty much my entire life's history, he feels that it IS in fact an illness of the "MS family" -- probably not one of the classic types of MS, but another variant.

I'm pretty scared & concerned (I'm only 21) and am not sure what to do. My neurological problems in my eye do seem to be worsening as well, and I have a call into my ophthalmologist. I suppose I'm just wondering whether any of this sounds like MS to you? I know that the functional difficulties that I have been having with my eye, are pretty characteristic of early symptoms of MS, but I don't know that the rest of my problems really fit into that category. I know you are all not doctors, but you do, unfortunately, have experience with MS, so I thought perhaps your thoughts might help me! Thanks.

Skeye

Rosie the riviter
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/16/2009 11:08 PM (GMT -6)   
Skeye,
I haven't been offically diagnosed yet but I had the experience of just going to a nuerologist that sort of brushed me off because I was nervous and had a hard time explaining my symptoms. I called the National Society for MS and the director there said it was very important that I saw a nuerologist that specializes in MS. The MRI showed lesions and the more I've taken it uppon myself to find out if my symptoms were normal....I am now gratful for chat rooms and Web MD, I realized I wasn't going crazy with all the different symptoms I've had.Numbness in hands and feet, electical impulses driving you crazy, and now I have a vision problemin one eye. In order to read right I have to close one eye. I just passed an eye exam in December....regular yearly one & was told my sight was fine....All I can saay is make sure your nuerologist specializes in MS, Good luck! I finally get to see my doctor,April 21st. Take care!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 3/17/2009 7:25 AM (GMT -6)   

Good morning Skeye and Rosie,

Welcome to the MS board.  You both sound like you have some significant problems.  I am very sorry to hear that and I hope you are feeling better soon.  Skeye, has anyone said Optic Neuritis to you?  If they have, you might benefit from a course of solumedrol.  Solumedrol is a course of IV steroids.  I have had mine done at home so it does not necessarily mean a hospital stay.  It depends upon your insurance of course.  MS eye issues often respond to the solumedrol. 

Rosie,  I was diagnosed by a non-MS neurologist. He then referred me to an MS specialist who confirmed his diagnosis.  You can get diagnosed by a competent neuroligst.  You definitely need an explanation for the lesions.  There are many things that can cause lesion besides MS.

http://www.mult-sclerosis.org/diagnosingms.html

This site has really good info on the diagnostic proceedure of MS.  By the way, I have never heard of the "MS family" or variants of MS.  What does your doctor mean by that? 

The National MS Society is an excellent resource.  They are very willing to discuss any issues you may have.  Good luck to you both and I truly hope you get some answers to your medical questions very soon.  I also hope that you do NOT have MS and that you have something easily treatable.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3012
   Posted 3/17/2009 6:43 PM (GMT -6)   
Hi Gretchen & Rosie,

Thanks for the responses & the website - I'll definitely have to take a look at it! Rosie, good luck! I hope you get some answers!

Gretchen,
No, optic neuritis has never been mentioned by name. No one has ever put a name to my optic nerve inflammation, however, I have been on multiple courses of steroids (mainly prednisone) & they have not had any effect.
By "MS family," the doc explained that MS there were several specific subtypes of MS & that MS was a very specific illness, but there are many illnesses out there that are very similar to, but not the same as MS, in the way that they present. He said that at this time, none of those illnesses have specific names because they are more like individual variants of a disease. I'm not quite sure if this makes any sense, but it seemed logical the way he explained it.

Skeye

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3518
   Posted 3/17/2009 8:57 PM (GMT -6)   
Skeye,
 
I had never heard it called "variants" before.  I googled MS variants and found that "variants" means other demylenating diseases.  These include optic neuritis, transverse myelitis, concentric sclerosis of balos, devics, schilders disease.  The first two can be one time illnesses that can cause permanent damage but tend to be one time deals.  The other three are devastatingly progressive demylenating diseases. 
 
The prednisone you took is not quite as strong as solumedrol.  Solumedrol is usually 1,200 mg of steroid solution.  It is infused via IV (this takes 1 - 2 hours) every 24 hours for 3 to 5 days.  It is extremely high dose.  It is not without its side effects.  The strong anti-inflammatory action tends to ease Optic Neuritis pain and vision issues.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 3012
   Posted 3/17/2009 11:48 PM (GMT -6)   
Thanks for the information Gretchen! I googled optic neuritis & it does sound like that may be the source of my optic nerve inflammation & some of my visual disturbances, although certainly not all of my problems. I will have to bring up the solumedrol with my ophthalmologist when I see him next. I'll have to do some searches regarding the other conditions. I really appreciate your help!

Skeye
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