Reply To: MMN anyone update on here with it?

jk
April 2, 2017 at 9:45 am

Response to IVIG in patients varies. Patients who respond to IVIG generally do so within 2-6 weeks. However, this improvement will not last and IVIG must be repeated every 2-4 weeks. Perhaps your husband would benefit from more IVIG more often. Ask your doctor about this.

Some patients may eventually stop responding to IVIG. And, sadly, some patients may not respond at all to IVIG.

I have quoted this from PubMed for you: “The correct diagnosis, however, can be difficult to make in patients with atypical or overlapping presentations, or nondefinitive laboratory studies. First-line treatments include intravenous immunoglobulin (IVIg), corticosteroids or plasmapheresis for CIDP; IVIg for MMN; rituximab for anti-MAG neuropathy; and irradiation or chemotherapy for POEMS syndrome. A correct diagnosis is required for choosing the appropriate treatment, with the aim of preventing progressive neuropathy.”

In my own case, several major medical centers never did agree on my diagnosis. You mention you’ve already seen 4 neurologists. At least consider finding a center of excellence from this website and seek another opinion.

Click here: https://www.gbs-cidp.org/support/centers-of-excellence-2/

It becomes a long, difficult and discouraging battle. Don’t give up.