Not SS

[KRicho]

In 2008 I was admitted to hospital with left arm weakness within a few weeks I had developed nystagmus and dragged my left leg. I was found to have inflammation on my brainstem. I slowly recovered (with the help of I'V steroids. I have slowly (over the last 12 months ) got worse ie  ii  walk as if I am drunk, I am no longer able to write (I an left handed) and I have pain in my neck and in my left temple.  The MRI has not changed and I have no O bands. Any info or advise would be very welcome.

[rendean]

The FDA has approved Copaxane a MS disease modifying drug (DMD)to be used in persons who have suffered a CIS, Clinically Isolated Syndrome. It sounds as if you qualify and perhaps starting a DMD might to be your advantage.

Talk to your MS neurologist about this. It could prevent any further relapses. I had only 2 lesions on my MRI and ZERO O-bands and still got a diagnosis.

To the left of this column is a list of Health Pages, most written by one of our members, Quix, a retired pediatrician with MS. They are factual and based on sound scientific evidence.

Here is the link to the one about having MS with no lesions, there are many more that may be helpful to you:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36

Please let us know if we can be of more help to you.

Best,
Ren

[KRicho]

Thank you so much.please see my response to teeny. Thanks for your time and comment.

[KRicho]

Thank you so much for your response.  My neurologist says the dx is multiple sclerosis and the description is solitary sclerosis, because there is only one scar onmy brainstem, he is starting me on iv steroids within the next few weeks so I am feeling more positive. Thanks again

[Lulu54]

Welcome here - have any of your doctors mentioned Multiple Sclerosis as a possible diagnosis?  I would search out a neurologist who specializes in MS and have a thorough evaluation rather than depend on general practioners or neurologists.  

I'm sorry you have been left in limbo so long with this type of slow decline.  Keep seatrching and please feel free to come back and ask your questions.

Lulu

[teenyturner]

Hi,

I don't even have an idea what the problem is, it could be any one of a number of things.

It's been 4 years since your brainstem inflammation, have you been followed up by a neurologist?

What you describe sounds pretty serious, can you go to the ED to fast track a referral to a specialist?

Wishing you all the best.

Chirley