Multiple Sclerosis (MS) Support Group

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Sherie 02/27/2007

I know this is a difficult question to answer, but for all of us in limbo, an honest answer will really help us to deal with what we are going through.

How likely is it that those of us, who have been living with symptoms and having exacerbations, will eventually be dx'd with MS?

Maybe some of you longtimers can help to ease some stress and disconcernment. It would really be appreciated.

Thanx for any comment or advice.

Sheri

deleted_user 02/27/2007

I do understand your question. I think I had MS symptoms for a long time but the doc's couldn't figure out what it was wrong. First the neuro doc found the lesion on my neck (I had arm pain) and one on my brain. But my spinal tap came out normal numbers. My doc said that it must be an autoimune disorder. Maybe Lupus but the blood tests ruled that out so all that was left was MS. Then 7 months latter I did another neck MRI and the other lesions were found. So for me 7 months.
Hope that helps.

deleted_user 02/27/2007

sherrie... that's a tough one... statistically, it depends on what your presenting symptoms were... such as people who have presenting symptom of optic neuritis have about a 70% chance of being dx'd with ms within 5 years... and so on and so on... i guess what i'm saying is that the symptoms that you have been having are very consistant with an eventual dx of ms... and that all depends on how confident your neuro is with dxing pts with ms... with me, it took only 3 months, and i had only one lession on my optic nerve, but my lumbar puncture numbers were nuts and my symptoms were all textbook, so he made the call and started me on treatment... hope that helps

deleted_user 02/27/2007

Wow, my symptoms came on so fast that there was no time for a absolute diagnosis. It really does depend on the individual. The two things that will make it a positive diagnosis are leisions in your MRI's and results from a spinal tap.
I never had a spinal tap. I got brain surgery instead. My presented like brain cancer, like I said, the symptoms came on fast for me and the leision that they first found was the size of a triple A egg.
Yeah. So, it really is different for each person. But this place is helpful, you will get a lot of support no matter what, and also a ton of good advice.
Good luck.
Peace!

LarryLDN 02/27/2007

I dunno, but anyone who thinks they got it, and not DX'd yet, GET ALL THE INSURANCE (life, medical, disability 66 2/3%) you think you'll ever need, BEFORE you get a DX! Once ya got a DX, that's it, what you got, or don't have, is all you may ever be able to get.

Sherie 02/27/2007

Thank you all so much! It really has helped. I've got a lot of preparation and thinking to do! Onto my new adventure!!!

deleted_user 02/28/2007

In my opinion it all comes down to your neuro, always get second opinion's even a third. My first neuro was fresh out of school and stared right at my lesion the size of a dime on my head and with all my symptoms told me now way I have MS, sent me home with a diagnosis of migraines and restless leg syndrome, luckily my follow up appt he had left the group and I had a veteran neuro who took one look at my MRI and said do you know you have MS. So fight for a good docktor.

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