[eeyore2]

...it is extremely frustrating. After ~2 years of doing relatively well, I've started having sensory ("numbness") problems in my left arm and leg, long with mild bladder leakage (and having to push on my abdomen to get out what is in there when I try to go)...
so, they are saying MS again...

I've been diagnosed with conversion disorder then MS, then MG, then psych again, then they found a cervical disc compressing my spinal cord (with improvement, but not resolution of my problems), then MS, then MG, then definitely NOT MS or MG, then residual cord compression with unknown etiology of chronic aspiration and depression

while things were stable I could "ignore" everything (I use crutches/ wheelchair for longer distances) and I've not seen my useless neuro's for ~2yrs

Now I have to go find one again (my family doc thinks its MS--my prior spinal tap was negative and I have few scatttered small brain lesions)

I don't care what they call it--I just don't like getting worse

Anyone else been undiagnosed for >10years?

[SallyC]

Hi eeyore, welcome back..

I'm glad you had those two years of normalcy for yourself. Those remissions are nice. @#$%# MS seems to always come back to haunt you, so sorry.

Since you're unDX, I take it, you aren't on a DMD? Have your PCP recommend a Neuro with some MS knowledge and a better bedside manner, to restart the DX process.

Stay with us and let us know how it goes..

[eeyore2]

I love your tag line---I was on Betaseron and then on Rebif but stopped when they switch my dx to myesthenia gravis (MG), when I was put on IVIG, until I crashed and gave up on neurologists.

I still take mestinon (symptomatic tx for MG) b/c it seems to help my swallowing and truncal stability. As things were not getting worse, I dropped many of the meds 'd been on (Neuronton, baclofen) and avoided prednisone like the plague (that is the likely cause of my downward depresive spiral)

I don't know what to think or who to trust b/c it seems every Dr says something different

I'm trying to get an appoint with a local neurologist, although I know nothing about him---we'll see what happens

Thanks again for "listening"

[Debbie D]

Maybe you should consider a place like Mayo...I hear you about getting tired of the runaround. I didn't get dxd for 3 years after my first visit with a neuro...
they seem to be putting patients on dmds right away now...just in case, I guess...
keep us up to date...

[jacksonsmommy]

I have a friend who paid to go down to the Mayo clinic to clear up the MS mystery. She had two neuros here in Canada arguing whether she had MS or lyme. Mayo said it was lyme.

[jacksonsmommy]

I also went undiagnosed for over ten years. I'd had a bout of optic neuritis that was misdiagnosed when I was 22. Had they ordered the MRI then, I think my diagnosis would have been MUCH earlier. I'm still angry at that opthamologist.