Thanks for your advice yesterday Dawn. I also talked with another person who had experience with GBS. It sounds like at this point my symptoms could be residuals of GBS or if it is CIDP, I will have to wait and see if weakness returns. I am pretty sure that I have autonomic involvement. (dry mouth, GI problems, body temperature issues)
I was talking with my coworker who has been to Mayo for brain surgery and she is going to give me some information. I am going to explore this route since I don’t feel like my current docs are being very responsive. I have yet to speak with the doctor after trying to get a hold of her all week.
I guess my point/question/problem is; though the prendisone has helped, is helping- it is losing it’s effectiveness and is causing other issues.
I’m told the IvIg should give some relief, almost immediately. It has the opposite effect! Took me 2 weeks to recover from the initial Load and a week toounce back from the second treatment. By that, I mean blurred vision, abdominal pain, MORE numbness/tingling, not less? I awoke the night after my second treatment numb from the waist down, thinking I was paralyzed? Scary when you are not fully awake, but it subsided.
I’m, actually, niot doing too bad- but it’s not improving and sseems to eb n flow dthroughout the day. I AM weak, exhausted and, basically, unable to work in my position as Regional Sales Rep. I’ve been advised to apply for SSDI, which I’ve done, but, have been praying for Treatment to kick in and me to get back to Business. (I’m a self-employed single fatther of two, who’s “to do” list is Prodigious!)
Neuro tried backing off the Steroids to every other day, ummediate relapse. POlayed w dosage til I’m kinda at 40mg one day, 50mg the next, any less than 40 and I get bad quick?
Look, maybe I’m just impatient? I was only diagnosed in Sept (EMG, NC and LP all seem consistent w CIDP) He said “your protuens are at 60 when they should be 40” and I saw the scope patterns on the nerve conduction (I used to sell ignition papattern scopes) there were several groups on a “30% delay” and no automatic reflexes (legs or arms.
It feels like they are either misdiagnosing me, mis treating me or something. Meanwhile I rarely sleep more tha 5 hrs, and am getting weaker by the week? The IvIg just makes me ferel sick, blurrs my eyes (maybe reacting to my contacts?) and makes me feel even more wiped out? The pain in my abdomen is dismissed as “unrelated” thoughI did have them check liver enzymes, as well as kidney, last Infusion. Ib was told both were “normal” but my “sugar was high 138, and protien low?” I don’t know!
I’m 46, w one going away top college, another on 6th grade, a 3 acre yard, a big old house, a Business I enjoy- One Man Business (finally) and so many half finished projects WITH NOBODY TO HELP.
Sorry to complain and wax long, here, I’m just trying to figure whether to just, pray for SSDI or fight tooth and nail to get better. Doc says “wait n see.” Meanwhile, I’m not sleeping, not able to do much else, usefuland feeling like Atrophy will knock me out! Broken bones, traction, rehab, etc, I’m well used to, but this seems so nebulous and infinite?
Look, thanks for listening, I’m taking any advice and thinking of switching Docs (mine is understaffed and overworked- even if he does seem familiar w GBS-CIDP)
Sorry to bother you
Peace through Christ,
Dawn, I want to chime in and tell you that you made a difference for me, too–thanks for being there to encourage me and talk things through!
I pray for you and Kevie during all your ups and downs. Here’s hoping 2008 has many more ups! Take care of yourself, too!