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HI EVERYONE! BEEN A LONG TIME!

OK, how about some suggestions? First, again will apologize for writing/spelling, cant see right and cant feel right! I’ve had PN for 11 years, 10 in wheelchair, and gastroparesis starting with year one, with two severe bouts of C-Difficile both of which made me much sicker. I’m getting down about 12 to 14 oz a day of “liquid food”, that’s it.

I’ve had all the PN tests, even had a doc manage to give me IVIG once a week for a year and a half even though had no auto-immune markers. It made me feel really sick and I hated it, I would feel better for a few days after the side affects wore off, but in long run did nothing and was worthless.

The doc I saw the other day is Director of the program at a major medical center and really good, and thinks if anything they haven’t been able to test for – it would some kind of genetic variant on PN there is no test for yet. He says he has never seen this combo of symptoms like this. There are no sensory nerve responses at all. Motor is all of a sudden rapidly disappearing, I fall all the time cause loss of balance.

Anyone at this stage? They just tested all kinds of blood work, vitamins are fine, the only strange thing was a count of 1,200 on B12, and I take no supplements. (They are in the Ensure I live on).

Appreciate any ideas!

This is always difficult to read and hear about... I am so sorry you have to go thru this. I couldn't live like you are!

Have your doctor look into this program:

http://rarediseases.info.nih.gov/Res...aspx?PageID=31

Maybe this could find some answers for you.

I am sorry you are dealing with this,, I have a lot of sensory stuff,, just going to a different room with a different temp sets it off,, starting to trip a lot also,, like you its coming on fast,, they dont have a clue whats doing it,, had all the blood test,, been to Mayo,, Nothing,,, only a Dx of (some) small fiber neuropathy,, life sucks like this,,