Hi all !
Update to my post - Hi Ho - It's off to the doc I go.........
Repeat NCV showed a halt or if I want to show off and use my Sclero-Cabulary....a SCA-LT (scleroderma induced screeching halt!).
My legs still sometimes "give out" as do my arms (like in Yoga when we were all silent doing a pose until my arms gave out and you heard a loud BONK vibrate through the yoga room....good times!)
(oh yeah...the BONK was my forehead hitting the ground., good thing I'm hard headed!!!)
Anyway - Now the doc is thinking monthly IVIG injections at home. 8 hrs each for two days through IV - so if y'all have any good must see DVD movies let me know...I'll have about 16 hours to kill pretty soon!!
And if your local and want to join me for hydration and movies...Like Bob Barker always says's......
Come on Down!
Anyway - Actually hopeful about the IVIG - looking forward to see if it does relieve some of the neuropathy and weakness.
What is IVIG: it is essentially (very layman analogy) replacing my immune system temporarily, infusing it with immuno-globulin from donors to flood my own crummy system with un-broken plasma. The results/relief is temporary, as my immune system will catch on and my over-aggressive soldiers will essentially win the battle over the newbie cells again and create autoimmunity - BUT the interim of relief is said to last about a month or more.....so in that time you are supposed to feel pretty good.
I heard from a CIDP friend that you feel crummy after the 2nd day and are kinda ugggg for the third day, but day four you are feeling pretty good. She says it's worth it and she couldn't live or WALK without it!
So GAME ON!!!
I'll keep ya posted!