Re: Kelshadnache - newbie

[Guest guest]

From what I've read the symptoms that I am having sound a little like

MS, but like I said I was checked for MS five years ago and was told

the test was negative.

Have any of you had symptoms like these?

How long did it take you to get diagnosed?

Will MS always show up on an MRI?

****

Welcome.

Yes, I've had all those symptoms at various times over the last year -

starting 11/04.

My PCP was willing to decide that yes, it's MS in August. It was *probable

MS* til then. I don't have a neuro - the neuro was an idiot.

The MRI is *90%* accurate. That means that 10% of the time it is NOT

accurate. I had no lesions on my head MRI. Can't afford to do spinal MRI,

which might have lesions. At any rate, reality is that MRI lesions show

damage from prior attacks. If your first attack is violent (mine was, and

yours certainly sounds like it was 5 years ago) it's entirely possible to

have symptoms with no damage YET. Note hte YET.

In my case, after the MRI was negative, we did a spinal tap. The spinal tap

showed 4 oligoclonal bands. Banding like that is NOT normal, is seen in 95%

of MSers. There are other causes for banding (brain cancer, syphilis,

encephalitis, other auto-immune disorders) but they were all ruled out by

either the MRI or the $1200 blood workup we'd done.

That left MS, or myoclonic epilepsy (which would also cause the jerking,

wouldn't cause the banding, but I couldn't get the PCP or the neuro off that

bandwagon) - I had an EEG which was normal, so all that was left on the

*could be* table was MS.

Started on Copaxone in October, and in 2 weeks was doing SO much better. Had

been on Neurontin since January - it helped some, but I was still having

severe jerking daily. Now my severe jerking is a few x monthly.

At this point, what's left is fatigue, eye floaters, occasional severe

jerking, more frequent wobbling, and when we go to town, my legs drag (even

though I use riding cart) and I get much more shaky. The 2-3x weekly

horrible burning is mostly gone since Copaxone - I've had a few episodes but

only a few in 2 months.

It is very common for it to take people years to get diagnosed. Everyone

seems surprised that my symptoms came on so very suddenly and violently. I

went from completely normal, walking 4 miles daily, to having zero control

of my body - my arms & legs flailing completely on their own.

Amy