How do you manage neuropathy and loss of balance and walking ability?

@pnpam75 Panzyga IVIG is usually for CDIP. Most of us don't have this type of neuropathy. There is also Hytrulo by VyVygart, a new drug recently approved by FDA for CDIP. Unfortunately there are no similar drugs for the rest of us.

@suetex I was on IVIG from age 10-18 until I fell off my parents insurance. I quit getting sick all the time. I have asthma and kept ending up in the hospital with pneumonia. I had to repeat second grade.
My immune system has always been impaired. In 2005 hospitalized four times with pneumonia. I was told by Dr Oaklander (a research neurologist in Boston) that I would not be in as bad shape as I am if I would have remained on IVIG. I have Lupus, Sojourn, Hashimotos, and connective tissue disease as far as neuropathy I have small fiber neuropathy, disautonomia, severe axonal sensorimotor peripheral poly neuropathy along with cardiac autonomic neuropathy my heart beats too fast (tachycardia)or too slow (bradycardia). I also have problems with arrhythmias. My BP will be high or low which ever it wants to be. I also have pericardial effusion. Mine could very well be autonomic by nature. I found out by a neurophysiologist that my lupus, sojourn, Hashimotos and connective tissue disease could be linked to my mrsa bacterial spinal meningitis I had in 2002. My bacterial spinal meningitis was a staph infection. The only problem with that theory was why was my immune system so low when I was young that I was on IVIG.

@moorethrpy Sorry- I still don’t understand what Panzyga IVIG is. My major effect from PN is severe imbalance. Also what is Hytrulo by VyVygart. I am in Canada.
I also do not know what the abbreviation CDIP means. Please help. I do not know anyone else who has PN who could answer these questions that I have. Thank you. Pam Manson

@pnpam75 Panzyga IVIG is for CDIP (Chronic Inflammatory Demylinating Polyneuropathy. Vvygart is the newest treatment drug. Supposedly is very effectice for that type of Neuropathy.

I have the same condition. It would be nice if you would comment on this subject. As far as I know there is no cure for this condition, just pain medicine which jus makes the drug industry richer.

@bigal1956 I was told absolutely after my diagnosis for peripheral neuropathy that there was no treatment and no cure but should the pain grow too great to see my GP. I go to the gym to Aqua fitness five days a week I am now going to up it and do 2 classes in the hope that this will improve my a lot. Whilst my walking isn’t great it seems to be static however balance is becoming a nuisance hence taking two classes. I will post if the extra exercise helps anything good luck everyone.

@pnpam75 Panzyga IVIG is for CDIP (Chronic Inflammatory Demylinating Polyneuropathy. Vvygart is the newest treatment drug. Supposedly is very effectice for that type of Neuropathy.

@moorethrpy I have an appointment at U of M hospital on the 17th of Nov. It is suspected I have CIDP. I will let you know how it goes.

@larry68 what was the drug that you stopped taking?