IVIg Infusions for autoimmune neuropathy

My first lumbar puncture came back with a protein level 4 times the normal result.
I asked then what does that mean, and their response to me was, that you’re ill, but you don’t appear to be that ill!
Go figure, my second lumbar puncture about 1 yr or so later,came back about 2-3x the normal protein level.
Anyway, IVIG infusions we’re of no help in relieving my symptoms,so after 7-8 mos of infusions, they were discontinued!

I don't have an answer because I have so many unanswered issues myself. I just want to send a "mom" hug to you 😊❤️ and hope they find something. Auto immune issues are terrible. The unseen illness.....that drives bosses and family members crazy 😫😔

@johnbishop and @pb50 Pam -- Thank you for responses to my question on auto-immune treatment by infusion. Of course I will look into anything that seems reasonable. I have no specific diagnosis except OLP, which doctors simply refuse to treat, and may or may not be related to larger symptoms. Can anyone tell me: (1) do infusions work? (2) Are they covered by insurance? (3) Side effects? (4) Do they hurt? Or any other info based on your experience. My current symptoms: slowly developing feeling of "vibrations", moving over 2-3 years from lower leg upwards to entire body; now it is neuropathy. I can walk distances on even ground, but have other odd impediments to ordinary walking around. Also, the vaccine made all of this much worse. Since it is supposed to "hype up" the immune system, I believe it over-hyped mine to the point that it is attacking me. A ny opinions?

Couple Of points.
1) do infusions work? The degree to which the meds being infused are effective is highly variable. But generally speaking yes - or insurers wouldn’t cover them. In my case, Remicade is extremely effective at
Keeping my RA at bay.
(2) Are they covered by insurance? Generally speaking most are. Your doc is unlikely to recommend one that isn’t.
(3) Side effects? Highly variable - I don’t get side effects per se. A bit of fatigue on infusion day. Risks are there but it’s hard to say “yep the
Biologic caused that”.
(4) Do they hurt? Or any other info based on your experience.
I have no pain from it. Sometimes my blood pressure goes down during the infusion and I get clammy. Doesn’t persist.
I remember my grandmother with twisted fingers and big knots on her elbows and other joints. I don’t have that. I remember when it first Hit me in a very acute onset. I couldn’t open a door or a bottle of water. Walking felt as if I was on sticks instead of feet.
I have none of that any longer. So I’m grateful and blessed to live in a time when brilliant brains can conceive of these drugs.
Yes they turn down the heat on your immune system and that means you will have fewer immune weapons to fight off infections. So fight the old
fashioned way -
wear a freaking mask, keep your hands off your face, wash your hands, avoid crowds, watch Church online - all in hopes of avoiding something that could take me down.

It’s a choice. But it’s not everyone’s choice.

@jshdma, I'm sorry to hear that you haven't found anything that helps with your symptoms. I'm not sure anyone here can answer all of your questions but they are certainly good questions to ask. Do infusions work is a depends questions for me. I think it depends on the condition you have and other related factors could make a difference if they work or not. I think insurance coverage is definitely a question to find out before getting an infusion. Your doctor or insurance company should be able to answer that one. I think it may depend on the type of infusion and what condition is being treated. I've had several different infusions but none related to neuropathy or vibration type symptoms. I've had one for iron deficiency anemia and a few at the ER and hospital for a blood clot. I can't say that any of the infusions were painful but maybe a little uncomfortable at the time.

Are you able to seek treatment or a second opinion at a teaching hospital or major health facility?

One more point. The objective of a newer gen vaccine is to teach your immune system to react something that looks like this (shape, Protein,‘etc) not really to get it hyped up. Based on what I know about how they work, I doubt a vaccine was the root cause of your issue.

@johnbishop Tjhanks for your info. Indeed I have consulted numerous docs here in NYC and also in Boston. Neurologists here and also rheumatologists did tests, all came out negative.
Doc in Mass General described it as an "evolving syndrome that must be treated,." But they did nothing. I go back to Boston in Feb to another neiurologist. My sense is that there is some kind of auto-immune disfunction, mostly because as it continues it affects one body part or organ at a time, so it is traveling through my entire body. At this point it seems that only my brain is OK (but who knows for how long ?).

@pb50 Pam Again thank you. About the vax, the OLP, which had been quiescent for a long time, did get much worse immediately after the vax, so I know there was a connection there. In fact, a case was reported where small child (6-7?) got lupus immediately after taking the vax, so there is at least one example of the vaccine causing an auto-immune disease. The mother ws frantic because she was told the child would have to have steroids for her lifetime.

O didn’t suggest there are no cases of reactions to vaccines. I was only commenting on the statement that vaccines are ‘supposed to hype up the immune system’
Regardless of method, the intent is to introduce or teach the immune system what it’s looking for -
Anyway best of luck

@johnbishop- I too have developed peripheral neuropathy from Chemo. I feel it has worsened
after contacting the covid virus at least 3 different times. The last bout of covid resulted in a broken 5th Metatarsal bone that didn't heal. I feel that I am still fighting the inflammation from the virus.
I know there are no answers for the disabling affects that the virus leaves on a person.
Maybe, one day we will find what this virus has done to out bodies. I'm sure there will be more autoimmune diseases and Parkinson's diseases. Definitely a bio weapon has been released on the American people.