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DADS-M - anyone else with this diagnosis I’d love to hear from you
Hello fellow neuropathy sufferer and survivor. I have had DADS-M. Now for about 12 years. It started in my feet with burning pain, tingling, shooting pain etc. and has now progressed to excruciating pain in my back which is now treated with 70 mg of morphine per day plus medical cannabis at night before I sleep in a very low dose. The cannabis actually works better for pain than morphine. The problem is I cannot tolerate the psychoactive effects in the daytime. Because Cannabis is so long lasting in the body, the residual effect of nighttime vaping reduces my pain burden by about 50%. I know this because during a recent hospital admission, they refused to allow Cannabis. Within a few days I went into a pain crisis and my blood pressure and heart rate escalated. They couldn’t get Cannabis fast enough to reduce this pain. I am also experiencing other issues, including bowel, bladder, optic nerve damage, and problems, aspirating fluid occasionally. I have very little mobility due primarily to the pain that movement produces. IV I G was not effective. No other treatment has been offered to me. My doctors do not understand this illness , and have no time to do. The research is that would be necessary to bring them up to speed. As a consequence, being kind of a nerd myself, I have done as much research as possible with any new articles that appear that I can access. I find the hardest part of this illness is the isolation. It produces. No one understands and I have not been able to find any kind of support group. I am hoping maybe this forum will connect me with others, sending love to all those who are suffering with rare illnesses.
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@dorilyn you are going through a very tough time. I read about your type of neuropathy because I was researching Chronic Inflammatory Demyelinating Polyneuropathy. I believe my doctor should be doing more testing on me for a complete diagnosis because I feel like I have Chronic Inflammatory Demyelinating Polyneuropathy .
I understand the isolation and the frustration of not being understood. Whenever we have pain, aggravation and stress make it worse.
It’s great that you reached out of this Connect Group. I know you will have lots of support.
Blessings
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3 ReactionsThere are so many variants of CIDP. It is possible you could have it. There are specific diagnostic tests that can be done that are pretty definitive. I finally got a good neurologist who said to me I don’t know what you have. But I promise you this I will find out. And she did, she ordered a lot of tests that were quite expensive and had to get special permission to have them done free in Canada, when they were finished, she gave me the definitive diagnosis of DADS-M. If you’re not happy with your doctor, you can get another opinion, and look up the tests that are normally done to diagnose CIDP, although they had to do extra ones to give me the diagnosis of DADS. Thank you so much for the support. I really appreciate it. I hope you find out soon What is really going on and get a definitive diagnosis. The good news is ordinary CIDP is usually treatable.
Blessings to you too. 🙏
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2 ReactionsI’m not familiar with DADS M but did see that Rituximab has been shown to be effective…
I assume you’ve tried that?
Steve
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1 ReactionHi Stallen, no I have not tried this because I have severe reactions to so many drugs it’s crazy. Also the literature says Rituximab is not very effective and can make things worse. I did post a question to see if anyone with DAD-M had a positive response to this drug. So far no one has responded.
Hi there, I have been dealing with polyneuropathy and MGUS for over 20 years and just got a diagnosis of DADS-M about a week ago. I too have chronic, to the point of being disabling, back pain, along with the painful neuropathy. I am in the US and just waiting on insurance approval to start IVIG and Rituximab. Based on the existing literature about this disorder, which is scant, I am not expecting much improvement, but there is a 100% chance I won’t improve if I do nothing. I’ll let you know how it goes.
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1 ReactionOne more thing, this is such a rare disorder, especially if you’re a woman like me, that it makes you feel very alone. You are NOT alone. We’re in this together. HUGS 🙂
I have CIDP DADS M. In 2022 and 2023 I had four infusions of Rituximab. My condition has stabilized and I have had a slight improvement. I should have done this when it was first suggested about 15 years ago but I was afraid of the fact it was a chemical treatment for cancer. Had I done so back then I likely would not be experiencing imbalance and loss of nerves in my left ankle requiring me to wear an ankle brace. My feet still burn but not as often. I did not find pain medications to have any effect on my burning feet but I did experience fatigue and brain fog. Since having the infusions I no longer have the shooting pain in my feet. My neurologist does not think I need another round of rituximab unless my condition gets worse. I am working hard to increase and maintain strength especially in my core to help support my balance. As mentioned it does feel a bit lonely now and then.
I am sorry that you are experiencing so much discomfort and I wish you the best.
You are not alone, but it’s very few of us. I was diagnosed last year with DADS-M with positive anti- MAG antibodies and a small IgM kappa expressing MGUS. Out of blue. Was a healthy person all my life.
Lots of blood testing, MRI,EMG, spinal tap, bone marrow biopsy, full body nuclear CT…
Six months of IGIV didn’t work, moved to Rituximab and had a severe flare in neuropathy symptoms- couldn’t walk at all. It was discontinued after 2 doses. Currently back to IGIV to reverse the effects of Rituximab. The alternative option discussed with both my hematologist and neurologist is chemotherapy. Needless to say how I feel about it. Totally at loss at this point.
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
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2 ReactionsHello @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?