← Return to CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Discussion
Comment receiving replies
Profile picture for itsmeagain @itsmeagain

@foundryrat743
@itsmeagain
Your Parkinson’s issues sound so familiar. I, too, did lots of falling-just standing still, minding my own business and pow, I’m on the ground.
But 10 years later I’m told it’s not Parkinson’s but CIDP which is worse than the Parkinson’s.
I’m 83 and have been on Privigen ivig for 3 years but Dr. and I feel I’ve reached a plateau which I don’t like but…..
I take it 2 days a month and I had to go off schedule 2 years ago when we had to evacuate for 8 days because of hurricanes (I live in Fl!) and I really slid backwards. So I’m back on schedule presumably for life.
As far as the neuropathy I’ve found that Alpha Lipoic Acid pills work to some extent.
God bless us and good luck to all with these crosses we bear.
And thanks Mayo.

Jump to this post


Replies to "@foundryrat743 @itsmeagain Your Parkinson’s issues sound so familiar. I, too, did lots of falling-just standing still,..."

@itsmeagain Thanks for your encouraging reply! I have used Alpha Lipoic Acid before, for tinnitus, so, perhaps, I’ll try it for the other problems I’m having! I finally got coping with Parkinson’s Disease easier for myself, and learned how to control triggers, for atrial fibrillation episodes, but this hypogammaglobulinemia, coupled with chronic inflammatory polyneuropathy has become a pain, where a pill won’t reach, so to speak, for me! My immunologist has prescribed a Pfizer product antibodies infusion course, but I’m having a terrible time getting approval and funding from Medicare and Secondary insurance! Meanwhile, I feel the disorder progressing, with parasthesias going further up my arms, and legs! Because of what inflammatory arthritis, carpal tunnel syndrome, and Parkinson’s shakiness has done to my hands and arms, I don’t feel I can do self infusions, and my daughter, who has a nursing degree, but doesn’t live near me, to help me, agrees. My pharmacy insurance provider refused to approve my and my Dr’s request, for I-V infusion, at an infusion center. So, I’m waiting on Medicare and my secondary insurance! At this point, I don’t know who to turn to, for help! At nearly 80, I’m to old to play the political games, that go against my health needs! There were cuts to Medicare coverage, and I lost my Medicare Advantage coverage, through the last government bill, that deeply impacted my finances! I’ve already had to pay out of pocket nearly $3,000 dollars, for medical care, since January! I didn’t have secondary medical insurance in January! I had to have scans, tests, and Dr. appointments in January, that revealed that I had a stroke, on top of everything else! The hospital was cruel, in saying that they would not provide scans, or tests, or Dr. care, unless I paid, in cash, the amount that Medicare doesn’t cover. So, It didn’t matter to them if I was sick! So, they demanded money up front, I paid them! By the way, I have an excellent credit rating and history! What’s so ironic about all this, that’s been occurring, since January 1, is that I used to work, for this same hospital, as a security supervisor, before I retired, some 22 years ago, when I was in good health! I recall how I worked so hard, stopping crazed patients, from attacking, or hurting ER Dr’s, hospital personnel, patients and visitors, a couple times putting my own life and well being in jeopardy! So, what a way for this hospital staff to thank me, for my service to them, by denying me any kind of care, unless I pay cash upfront, for the amount not covered by Medicare! These are difficult times, especially for vulnerable, elderly people, where I live. I can imagine there are, also, limitations on Fiji for you! Thanks again for your reply! I am so thankful that Mayo, has this forum! By the way, the hospital that I mentioned, in my comments, is NOT Mayo, or a Mayo related hospital!

@itsmeagain CORRECTION, from foundryrat743. I wrote Fiji instead of Florida, as your place of residence! I apologize for that! I misread the Fl initials. I have vision problems, from my stroke/not that that is an excuse, but it can be a problem for me, at times! The special, expensive, prisms in my glasses seem to, sometimes, play tricks on me! Ha!