paralyzed w/ 1st system in 3 weeks

[chewbecca]

Have you heard of having your first symtom of MS, frozen feet, stumbling, falls, and three weeks later after IV steroids and oral steroids wear off waking up paralyzed? I had plasmapheresis at Mayo Clinic Rochester shortly after the paralysis to no avail. They suspected that I did not have the right type for plasmapheresis to work.  I am still paralyzed one year later from the groin down.

MRI's showed five lesions on my brain but the one that got me was what they say is  the lesion on my conus medullaris??-lower spine.  I have been on rebif since and not had another attack since this past year. One of my MRI's said infarct possible, neoplasm unlikely, read by a Green Bay Radiologist. My spinal tap was inconclusive, and was not what the Mayo neurologists had expected to show, but they still felt MS.

I had cleaned ceramic tile on my hands and knees, moved heavy furniture, and worked with pesticides on my flowers, and finally had dye come off my shoes onto my feet prior to this paralysis. That is the only unusual episodes I can think of prior to this paralysis other than being in Mexico 2 months prior and eating food in small towns. I was just reading about Cysticercosis?? Any other thoughts/ideas? I can accept a MS diagnosis but my case according to the Dr's, my case is so unusual, I can't help but think I have something else. Living life paralyzed is tough but there is always hope.  Thanks for your input.
Chewbecca

[chewbecca]

Thanks Quix,

I guess I am thinking more of intermedullary spinal cysticerosis which is also very rare. i guess the parasite lodges in the lower spine. They did say something about calcifications on my brain regarding lesions.

My local hospital and, I think Mayo, looked at GBS. I have flaccid paralysis. They did look at Lyme here and I believe at Mayo. Only Plasma Exchange once. IV steroids three times and oral once. Repeat spinal at Mayo after home hospital. Not sure what CDIP is.

On the muscles, can you see white with a skin tear?
Thanks for welcoming me.
chewbecca

[Quixotic1]

Great name!  I'm so sorry for what has happened to you.  Did the neuro's at the Mayo suspect Guillain-Barre Syndrome?  I'm sorry I don't have better ideas.  Do you have a flaccid paralysis or a spastic one?    Have they done a worup for tick-borne illness, Lyme and related ones?  Have they tried steroids and plasmaphersis again or just the Rebif.  Have they repeated the spinal tap?  Have they considered CIDP?

I practiced quite for a decade or so in East Los Angeles and saw a lot of cysticercosis.  Generally I don't think the cysts would be mistaken for MS by a good neuroradiologist.  They don't look like demyelinated brain, but calcifications.  They can also been seen on plain films of the skull.  I have also not seen it present with sudden paralysis.  Usually it presented with seizures.  The cysts set off irritable foci in the brain causing the seizure activity.  Another way to look for the presence of cystercercosis is antibodies in the blood, I think, and soft tissue X-rays of the muscles.  The best muscles are large ones like the thighs.  The parasite also has an affinity for muscles and creates cysts there whcih become calcified.  They show up as round or oval, bright white (like bones) calcifications in the muscles.

You are most welcome to our forum.  I'll be back later.  Quix