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

Discussion
Comment receiving replies
@kle

Thank you h37 for sharing your experience and so sorry to hear about your symptoms. I hope the infusion will continue to make things better for you. May I ask if you experience any pain anywhere in your body or is it just numbness and tingling that are confined to the feet and hands? Do you have any other symptoms besides tingling and numbness? As for me, I experience pain/sorenes, tingling and numbness heavily in my hands and feet but also legs, thigh, buttuck and upper body. My muscle feels weak all the time and when I try to do things it takes a lot of effort. Pain gets better with movement but once movement stops pain intensified. Also, I get dizzy easily when standing up and when getting up from sitting or lying down, have stomach bloat, frequent urination and heache all the time. If I try to exert myself, severe pain sets in and take me several days to recuperate. I'm not sure if this is a typical symptoms for DADS.

Thank you and John for sharing the link about DADS!

Jump to this post


Replies to "Thank you h37 for sharing your experience and so sorry to hear about your symptoms. I..."

Hello kle,
I'm so sorry to hear that you are experiencing pain in addition to the other symptoms you describe. That sounds utterly exhausting. I hope you are able to have some productive conversations with your doctor to help provide some context for the symptoms you describe. At this point in my journey, I'm not experiencing pain that is associated with the DADS/Anti-MAG diagnosis. Numbness (feet), ataxia, balance challenges, and paresthesia (arms/torso/legs) are the symptoms I experience and read the most about.
Another resource I found early in my search was a book called Peripheral Neuropathy by Norman Latov (I downloaded it from Apple)...it's from 2007, but it was still helpful for framing up the different manifestations of neuropathy (i.e. motor, sensory, and autonomic), the structure and function of the nerves, etc. When explaining the autonomic nerves, Latov describes the "autonomic nerves that control involuntary functions such as heart rate, blood pressure, sweating, and the bowel and bladder" (26). He also describes the different functions/structures of large and small fiber nerve axons. Small fiber axons "remain unmyelinated" and "transmit signals from pain receptors in the skin [and] form the autonomic fibers that send signals to and from the internal organs" (29).
I'm way out of my depth when it comes to this stuff, and I have no medical background. But this is what I have read. As I understand it, DADS w/ Anti-MAG affects the sensory nervous system and particularly the large fiber (i.e. myelinated) axons.