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DADS-M Neuropathy with Anti-Mag Antibodies...anybody else?

Neuropathy | Last Active: Oct 11, 2023 | Replies (30)
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@idahoj

I have been diagnosed with CIDP with DADSS. Tried IVIG but had bad reaction to this. Tried high dose prednisone with no response. Then had 2 rounds of Rituximab with no results. Latest EMG shows progression of disease. Will be starting physical therapy. Has anyone done physical therapy and did it help? Frustrated with progression of disease and uncertain of my future. Probably had the disease for 6years but not diagnosed until 2021…..covid slowed opportunity to get treatment started. I did not have covid.

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Replies to "I have been diagnosed with CIDP with DADSS. Tried IVIG but had bad reaction to this...."
John, Volunteer Mentor | @johnbishop | Oct 11, 2023

Welcome @idahoj, I know it has to be frustrating not having a treatment that helps and not knowing what the future holds. While you wait for members that have CIDP and DADS with experience having physical therapy, I found some information that may be helpful.
--- Treatment Approaches for Atypical CIDP: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8005557/.

Did your doctors explain how the physical therapy could help?

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as143 | @as143 | Oct 11, 2023

I too have been diagnosed with DADS. I have thus far had 7 months of IV Therapy with Privagin and prednisone and 1 RITUXAN treatment about 4 months in to be repeated every 6 months. My original symptom was muscle weakness especially hips, thighs followed by numbness which began in left toes and progressed to both feet and both hands. I did find physical therapy to help a great deal with muscle weakness, gait, and balance issues but you must practice exercises at home to the best of your ability. I have not been to PT now in about 4 months due to a very negative reaction to Duloxetine which took a couple of months to recover from. Important to point out that this was my own personal reaction and I am not discouraging its use as many have benefitted from it, I did not. Have not been back to PT and would benefit from going back I’m sure but feeling too overwhelmed at the moment to resume. However, I have noticed only recently that my muscles feel stronger since the start of IV therapy even without physical therapy. I do use a cane outside of the house and with PT I probably wouldn’t need it or at least be less reliant on it.
I feel that in the beginning had I not started PT when I did I would have been in a wheelchair as my weakness got so bad. Couldn’t climb stairs, my knees constantly gave out and I would fall so definitely try Physical Therapy. I am sorry IV therapy didn’t work for you, or RITUXAN but I wonder if you weren’t on it long enough, it can take a year or more to see any results, and/or if you tried different IV medications as some work better for some people than others. I wish you all the best!

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