State of AntiMAG neuropathy in 2026

Hello, I am new here.  I just got diagnosed with AntiMag neuropathy in 4/2026 and am trying to learn about my options and what might be in my future.  I am not finding much recent posts here on AntiMag so I thought to create a new chat.

I have had symptoms for 15 or more years.  Starting with the feeling of wearing socks when I was not.  Thinking back there was some progression, but very slow.  In 2018-19 I would occasionally, in some situations and in low light environments, notice I was uneasy about my balance.  I did not seek medical attention as it became more noticeable in the era where we were all focused on a certain virus and a minor balance concern seemed minor.  I was pre-diabetic for as long and assume it was diabetic neuropathy and it would improve with better glucose control.  This year my A1C was dow to 5.3 with exercise and diet alone and I thought to confirm with a neurologist, only to be told I probably had CIDP.  Later on blood work confirmed it was AntiMAG neuropathy.

So far I have not started treatment.  My symptoms are still relatively minor and not impacting my life.   I have seen old posts where people stopped IVIG for a few months and had symptoms get noticeable worse and I wonder if treatment might make the disease more aggressive such that you become more reliant on the treatment to suppress it?  B cell depletion therapies seem too risky to justify for now.

Has anyone else had such a slow progression that you can share you experience.  My concern is that it will progress more quickly at some point.

I would rather not do anything to degrade my immune system and am hopeful new therapies will be developed that more directly address that issue with the bad antibody.

If anyone has information on treatments and how effective they are please share.