IVIg Infusions for autoimmune neuropathy

I had very similar symptoms. Diagnosed with brain stem and cerebellar encephalitis. Treated with high dose steroid infusions. If that didn’t work plan was to do IVIG. Had a good response to steroids. Now only taking CellCept. Not 100%, but much improved.

The brain is still largely a mystery. I’m not sure why a treatment protocol was made without a diagnosis so that’s where I’d start. Ask her neurologist for the “best guess” diagnosis that led to the medication recommendation. I’d also speak to a trusted pharmacist to ask about side effects and food/drug interactions, etc. Put together a list of all of her current medications, allergies, etc to give the neurologist and the pharmacist

Perhaps a list of my syptoms will sound familiar: Dry eye and dry mouth, sometimes extremely; Loss of weight bearing balance- meaning I can walk into walls by accident, too; legs are getting progressive weaker and remoddling as a result; dry skin all over. No esophagial involvement, but I have read about it. It can do a lot of neurological things when it is at its worse. I think mine started just before I got put on steroids for other autoimmune diseases and that interupted it to some degree. There is a tooth-ache all over pain that LDN interrupts, so if she complains about that you will know what to do. Look LDN up and read up on it first. Best wishes!

Hello so you have had IVIG infusions? What were your symptoms prior to the the commencement?Did IVIG
give you any relief from your symptoms? During the gap in IVIG did your symptoms stay at bay or did they resurface ?

I had two broken legs in the interim, due to a pitching forward of my transport chair, so pain was am part of the interim healing.
As far as iVIG infusions before and after that time, I believe the infusions lessened nerve pain, increased leg strength and range of motion. They happened simultaneously with PT twice a week, once in Aquatherapy at a nearby university pool.
I did not have any negative reactions to infusions, aside from minor body acne, which eventually cleared up.
I hope this helps.

I too had a protein level 4x higher than normal range.
Got no answers as to why, my C Reactive Protein also high which I’m told indicates inflammation in the body.
I have a lot of same symptoms as your mom, except for choking when eating and I do walk with a cane or walker because my balance is so bad.
My feet are so numb I can’t feel them,which makes it very hard to walk on.
The pins and needles are horrendous, have tried many meds over pst 11 yrs,with no relief.
Did several rounds of IVIG also, with no relief,so it was discontinued.
I was diagnosed with CIDP few years ago, and not one of my docs has a clue as to what I have and what caused it.
It started in my toes and worked its way up my body in past 11 yrs.
My right hand is numb now, I can’t hold anything without dropping it, and I can’t sign my name or write anything which really kills me.
I wasn’t a candidate for steroids due to hypertension and osteopenia, but I do t think I want to take them anyway, side effects are horrendous.
Right now my doc is offering me plasmaphoresis before trying another med called Retuximab which also is an infusion, once per week x 4 weeks,then 6 mos later do it again.
My quality of life stinks, so I don’t venture out too far, I get tired easily walking.
Can’t do much of anything activity wise, can’t even dance,which kills me.

Hello many thanks for the information
Best wishes

I have heard that there are at least 80 auto-immune diseases. Is this true? That's why they are difficult to diagnose. I have some unidentified A I problem, but no diagnosis. Docs almost do not believe my description of symptoms. I hear ads for "infusions" for AI diseases. Does anyone know about this? After years of struggle, it just seems hopeless. According to my tests, everything is fine.

Hello @jshdma, You will notice that we moved your post to an existing discussion on the same topic so that you can learn the experiences and connect with @michc, @lasks, @harley22 and other members with autoimmune diseases discussing infusions. If you click the link below it will take you to the beginning of the discussion:
--- IVIg Infusions for autoimmune neuropathy: https://connect.mayoclinic.org/discussion/ivig-infusions-for-yet-to-be-specially-diagnosed-autoimmune-neuropathy/

I thought you might also find this reference article interesting if not helpful:
--- IVIg therapy in autoimmunity and related disorders: our experience with a large cohort of patients: https://pubmed.ncbi.nlm.nih.gov/16040333/

In the last dozen years particularly, the development of biologic compounds delivered by infusion has exploded. They tend to be individually targeted to specific immune disorders such as Rheumatoid Arthritis, Crohns, Psoriasis, etc. I found this list - amazing to me!!
https://www.autoimmuneinstitute.org/resources/autoimmune-disease-list/