← Return to DADS-M - anyone else with this diagnosis I’d love to hear from you

Discussion

DADS-M - anyone else with this diagnosis I’d love to hear from you

Neuropathy | Last Active: May 16 12:04pm | Replies (10)
Comment receiving replies
@nikib14

I’m new to this forum but nice to hear I’m not the only one suffering. I’ve done ivig for a year and now doing rituximab as well I haven’t seen much improvement but haven’t gotten worse so I guess that’s a plus. There is a study going in through the Mayo Clinic that I just sent to my neurologist to see if it’s worth applying for. This chat won’t let me post the link because new. Sorry.
I will try anything at this point. I’ve lost my job, I can’t drive, I fall way too much, I’ve broken both leg needing surgery on one, broken foot, torn shoulder. I just would like a little bit of improvement to not be such a burden on my family

Jump to this post

Replies to "I’m new to this forum but nice to hear I’m not the only one suffering. I’ve..."
John, Volunteer Mentor | @johnbishop | May 16 12:04pm

Hello @nikib14, I'm sorry to hear you haven't seen much improvement with the IVIG treatment but it is a positive that it hasn't gotten worse. I thought I would post a link to the Mayo clinical trials site since I wasn't sure of the exact study you mentioned. New members are not allowed to share links for a short period of time to prevent spammers from posting on Connect.

-- Clinical Trials - Mayo Clinic Research: (searched on neuropathy): https://www.mayo.edu/research/clinical-trials/search-results?keyword=Neuropathy&studySiteStatusesGrouped=Open/Status%20Unknown#ct-table-1e092f88-73c7-4108-8fcb-8208f856d064.

There is another site you might find helpful also - Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

Have you been diagnosed with DADS-M?

VIEW AND REPLY