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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

My Neuro-Opthamologist told me about this, which would make sense, since he is "all about eyes". I did talk to my MS Specialist and my MS neuro about it; both laughed at me and told me that this was done with very few patients and is in no way accurate. I was also told about a blood test, which can predict disability rates- again, I was laughed at.

I did some research on my own. I learned that my doctors were correct, this was done with a very limited amount of study subjects. Im not buying it based on the fact that relapses DO NOT always equate disability. I have not had a single relapse in 4 years. Not one day of missed work/ school; however I now have 25 additional lesions. Yet, even with that statistic, I feel wonderful and appear to be physical stable. No new symptoms, no new issues.

I think studies like this are scare tactics. If someone is starting out on a DMD and has a new relapse/ attack- they immediately assume it isnt working (I know, I was one of those people 6 years ago) however, after taking the drug for 6 months to a year, all relapses stopped for me. Since then, I havent actually had a relapse; but I do have new MRI activity (glandolinium-enhancing) and yet not one new symptom. SO, does that mean IM progressing? Its the million dollar question. My case is being studied by quite a few Neurologists and MS specialists across the country; Ive been written up in medical journals- no one understands why the lesions, but no actual symptoms. I dont have just a few lesions. I now have over 100! But physicallly and mentally, Im 100%...

For the record, I have a very thin retina. Its actually torn twice. I have had laser surgery twice to fix it. The best eye doctors at Wills Eye Hospital in Philadelphia assure me that this has nothing to do with MS.


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