right now Im doing pretty good. I just had a relapse in january, really bad one. I started getting weak slowly around Christmas, right after new year I went in for plasmapheresis. By then ,no reflexes and almost paralized. Plus I develop what they called vasculatis, which is painful. It s the 3rd time that i get that with a relapse. It goes away and I get my strenght back after 4 or 5 cycles of pheresis.
Other relapses come without warning. I just feel tired and when I wake up I cant move from my neck down.
Most of the time I can walk slow and I work .I cant lift heavy stuff, I know my limitations. I do have everything at home W/C, walker, cane.
I lose my balance a lot, but over the years I learned how to walk in zig zag…lol to avoid falling.
Everybody wonders why I cant walk in straight line…lol:D
I did bring my cane just in case. The pheresis helps me a lot and I just had it done, so I feel lucky.
LOL, I can’t walk in straight line either 😀
Isn’t it weird the way it suddenly happens when you wake up in the morning and a portion of you is paralyzed that wasn’t before you went to sleep??!!
How many times have you had phresis over years (just approx) and what type of catheter did you or do you have in for that? Where is it located? That is next for me, so I like to hear different experiences. I have one month to improve in (I am not paralyzed anywhere @ the moment). Then I will be admitted for the plasmaphresis.
This must be so exciting to you after all these years. I hope everything goes better than planned and you fly through it!!! When/where is it scheduled for now?
Hope to hear back from you….thank you for sharing…