I spoke with my neruo 2 weeks ago after going through several rounds of IVIG over the past year with side effects that he did not feel out weighed the benefits now, and I agree, he wants to stop those. In the beginnig, the treatments allowed me to lift my leg, (my right was worse) to climb stairs whereas before I could not. Now, my legs are beginning to have that heavy feeling, and I find myself fighting to not "shuffle" as I walk. Also, the one thing that really bothers me is that prior to IVIg, I had what I call the "tuning fork" affect in my feet and lower legs but since IVIG it has moved to my hands and the way that it did so seems directly related to the treatment. It is in my hands, forearms, etc. As well as my feet, legs.
So, he said, when we met, that he wanted to start plasmapharesis in conjunction with chemo. But wanted to wait a month or so. Meanwhile, my symptoms, while not plummeting to the bottom of the earth, were worsening. Since the heart thing, below, he has decided to not do anything for a while and wait. ahem.
Then this heart thing last week. I wore the holter monitor after fighting to see a cardio guy, he found me to have potentially fatal ventricular tachicardia (V Tach), and a lot of it, over 48 hrs. Hello. I have been telling them my heart was skipping ta loo for a LONG time and I would feel faint. But, they put me into CCU immed, did a cath, ruled out any form of blockage, or disease. It was due to electrical issues. You got plumbing or electrical, mine is electrical. They tried to ablate my heart on the outside where they could see the origination of the problem, at the top right in the crease between the atrials. He fired 59 times. Could not stop the V Tachs. I now have a lovely device the size of a Maybeline compact implanted in my chest for life under my collar bone with a lead into my heart that not only serves as a pace maker as a first line of defense against these deadly arythmias but then goes on to the full monty of "clear" and kicks me in the chest like a mule (the drs. term). I supppose it will knock everyone in the checkout line at the grocery store down like dominoes cause Mama is going down. I have to hunt a seat when the beats start but that ain't always available and if I just sit down at the DMV in line, they are gonna be "whose your daddy?".
So, the cardio guy, when I asked, said, unequiviacably that he believes this is CIDP. The fear of what next hit me. The autonomic nerve system is comprise of delicious things that are just the mack daddy of things to render me dead.
I did not get many comments before, and may not now. If so, well, think guys. This is serious. When I confronted my neuro, who is the nicest guy in the world, and did not disagree with the cardio, he said the likelihood of this going to my diaphragm is like almost zero. Almost does not cut it for me today. Sorry. Just like 10% of the ppl with calcifications in their breasts have it be cancer and ppl with calcifications that look like yours? fuhgetaboutit. Why yours are well rounded and spaced apart, go home, take a valium. My little rounded thingys were high nuclear grade three cancer with comedo subtype, the worst you can have. So, almost makes me sick. I had to fight to get to the cardio guy.
Where is a clinic anyplace in this country (US) that specializes in CIDP or in autonomic issues. I already have gastro, heat regulation and now heart.
I am more than uncomfortalbly numb. I am becoming panicky.