Fantastic Kelly. Your pride in Emily is justified; she is a gifted young lady.

I’m so glad to learn Emily is treatment and symptom free. My neurologist’s goal for me was that I would get to the point that CIDP would not be the focus of my day. I can say I’ve arrived at that goal and I rarely visit the forum anymore (CIDP is just not on my mind very often if at all). Thinking back at the tremendous weight we’ve carried over the last 6 years since contracting CIDP reminds me What a burden those of us affected by CIDP carry (patients and caregivers). So I’m so glad that you’re free of the CIDP burden and not focused on CIDP on a daily basis either.

Your vigilance and hypersensitivity towards Emily’s health is wise because of the road you’ve travelled.

May God continue to richly bless Emily and you. Sending joyful cyber hugs towards you and Emily …

Gary

That’s priceless Jim. Coke should use that one for their commercials. Welcome home Terry1.

Hi Jim and Donna, I want to chime in on Donna’s comment on the spirit lifting quality of  your posts … humor is the best medicine and I ALWAYS smile when I see your posts.

Thank you Jim. Gary

synthia, I get a 1000cc injection in between my plasma pheresis (PP) treatments. B-12 is an essential element in the re-myelination process. I’ve regained so much motor function and sensory function since beginning the PP/B-12 protocol that I’m a firm believer and will continue to take B-12, because I’m evidently re-myelinating or growing new neural pathways. From everything I’ve read and been told by my doctors B-12 is not toxic. I usually get a couple of weeks after my PP treatment and it does seem to give me a boost and sustains me until my next PP. When the headaches, burning, numbness, and strange smells return I know it’s time for an injection. I can’t say whether it helps with the fatigue or not, but the headaches subside.

My neuro says the headaches and strange smells come from de-myelination of my central nervous system (CNS). While the peripheral nervous system is important to me, I’m more concerned about the effect CIDP has on my CNS … if the B-12 injections make the headaches and smells go away, maybe it’s keeping the CNS damage at bay or at a minimum at least.

Hope this helps,

Gary

I hope not; the forum has been such an encouragement, source of knowledge, and a place for compassion and understanding for me. I haven’t been visiting as routinely as I did early on because a lot of my friends had not been posting. I tried facebook, but it didn’t offer what the forum had given me (encouragement, source of knowledge, and a place for compassion and understanding). Jim wasn’t there to post his humorous pictures; Norb wasn’t there with his photos; Liz wasn’t there with her holiday gifs; the Taven wasn’t there; Kelly (and Emily) weren’t there; the prayer ministry wasn’t there; … I do wish my friends would return and the foundation would be sensitive to how important the Forum is to those of us with these horrible diseases.

Gary

Lori, My blood pressure has dropped (vasovagal response) three times. The first was early on while undergoing plasma pheresis (and I’ve had many PEs now). The first BP drop was scary. Mark is correct; after the first episode I could feel it coming on, told the nurses, they quickly gave me calcium (talk about a warm fuzzy feeling … ) and I avoided the blood pressure drop. After awhile I guess my body developed a tolerance to PE and I didn’t experience the BP drop. The second BP drop happened during the “rinse back” step in the PE (towards the end of the procedure). I started coughing and having respiratory problems and the nurse noticed it and ask me if I was having problems. She stopped the machine and pulled me off. It took me awhile to recover. The 2nd DP drop was very atypical and they thought I may have had an alergic reaction; again strange since I was going through rinse back. The third time was about an hour after the PE; we were eating in a restaurant and I felt very light headed and had to lay down on the restaurant floor and elevate my legs.

I write this not to concern you about the vasovagal response, but to give you the knowledge of how it may occur so you’re ready.

Also it took a few weeks for the PE to produce results, but they were dramatic. Remember that the PE only removed the offending antibodies; your body has to repair the damaged myelin which takes time. I see your last post was 2/3, so you’ve had some to hopefully see positive results. Let us know how you are doing.

Praying you are re-myelinating and are seeing improved motor function and sensory function.

Gary