CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

@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!

I am on Panzyga. I get it three days every three weeks.
That is the recommended dosage. 600 mls each day.
2mls/kg. Infusion time is six hours.
It makes a huge difference in my life. It helps my balance/dizziness and energy levels along with the muscle atrophy. I can finally sign my name due to the motor neuropathy my hands shook so bad I couldn’t write or sign my name.
My legs also have tremors. It gets better with the infusions.
Make sure it is given as directed by the manufacturer. Mine is autoimmune caused by my lupus, sojourns, mixed tissue disease and Hashimotos.
I have been diagnosed with several different types of neuropathy.
CIDP, dysautonomia, small fiber neuropathy, cardiac autonomic neuropathy, severe axonal sensorimotor peripheral polyneuropathy.
Cardiac autonomic neuropathy aka CAN causes blood pressure is either too high or low. It also causes arrhythmias bradycardia/tachycardia your heart beats too slow/or fast.
Neuropathy moves to anywhere in your body that you have nerves including your organs. I do not have as many arrhythmias as I used to since I started this.
I took IVIG from age 10-18. The neurologist said I should have never stopped it. She told me if I would have never stopped it I would not be in the shape I am in today.
She also told me I would be on it the rest of my life. Dr Anne Oaklander is a research neurologist. I live in Tx and went to Boston for answers. I was having problems with the motor neuropathy. It says movement disorder. They kept trying to diagnose me with Parkinson’s (negative) and then essential tremors. My tremors were due to the motor neuropathy. That’s sad I had to go to Boston to find out the truth.
I am 63.

I don't know if this is relevant to this Support Group, but I have been diagnosed with MMN. I will be starting a 6 month course of IVIg. My research has said that, if the IVIg doesn't work, I may have ALS. I have foot drop and lots of neuropathy pain in this foot. I have been through many MRIs, EMG, NCS, and lab tests. Abnormal results are EMG, NCS, and anti-gangloside antibodies. Right now, Mayo Clinic has me in a "wait and see" mode and will be interested in seeing if the IVIg relieves my symptoms.

@artemis1886

I am having very similar symptoms post stem cell transplant for scleroderma. The BMT doctor said it was neuropathy, but no further evaluation. I will see a neurologist soon.

Post-transplant, I have very limited ability to walk that so far was not diagnosed as why. As I start walking at a normal pace, my lower abdomen gets tense, dizziness, my blood pressure goes up, shortness of breath, tingling. I also have some muscle weakness in the arms and legs and muscle wasting. Pins and needles with tingling. Systemic sclerosis may be causing autoimmune neuropathy.
Do my symptoms look similar to your condition? What is your walking ability and daily activities? Any insight will help. Thank you

@altabiznet I have severe axonal sensorimotor peripheral polyneuropathy, small fiber neuropathy, CIDP, cardiac autonomic neuropathy affects Bp and causes arrhythmias your blood pressure goes up or down, your heart beats too slow or too fast.
I had emg/ nerve conduction test, biopsies, spinal tap. Mine is autoimmune. Yes I have balance dizziness problems loss of feeling in legs and hands. Muscle atrophy
Autoimmune disorders lupus Sjogrens Hashimotos and mixed tissue disease.

@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!

@foundryrat743
@itsmeagain
For funding please try the PAN Foundation. I have a grant through them that pays for these very expensive ivig treatments.
I myself did not apply for the grant. The company that supplies the drugs did. But you can apply on your own own. These people are vey good and very helpful. I think they may be able to help you.
I pray they do,
Good luck and God bless.
( I am 83.)

@itsmeagain Thanks! I will keep that in mind, but, for right now, I just found out that Medicare and my secondary insurance will cover the codts! I go in Monday for an infusion and to sign papers, so. hopefully, that will wotk! Again, thanks!This is good to know, just in case I may have a problem!