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Looking for a doctor who treats anti-mag polyneuropathy
I was diagnosed with anti mag in 1991. None of the standard treatments worked. I need a doctor who actually specializes in the treatment of anti-mag. I have seen several neurologists over the years and except for the first doctor I saw in 1991, none of them actually specializes in anti-mag. Unfortunately, the first doctor I saw no longer practices medicine. All suggestions are welcome. Thanks in advance.
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Hello @wcooke, Welcome to Connect. While you wait for other members to respond, Here is some information from Mayo Clinic on neurologists that specialize in these rare autoimmune disorders - Anti-Myelin-Associated Glycoprotein (MAG) or MOG Antibody Disease (MOGAD), including doctors that treat these conditions.
- Myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD): https://www.mayoclinic.org/diseases-conditions/mogad/doctors-departments/ddc-20560478
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1 ReactionIf you share what area of the country you r in, perhaps others can steer you towards someone, or a clinic, closer to your home
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1 Reaction@laura1970 I live in Texas, but I’m willing to see any doctor in the continental US.
@laura1970 I forgot to mention in my original reply, but I am trying to set up an appointment at Mayo Clinic in Rochester. Unfortunately, I’ve tried to get an appointment in the past and been unsuccessful. Maybe this time will work.
I found this about Texas:
UTHealth Houston Neurosciences Neurology in the Texas Medical Center provides specialized care for neuromuscular disorders, including anti-MAG, as part of their statewide Center of Excellence status; patients access it via UT Physicians clinics and primary hospitals like Memorial Hermann. This aligns with your healthcare expertise and research-driven approach, emphasizing evidence-based neuromuscular programs over general neuropathy clinics.
Nationwide from my cursory research suggests mayo and John’s Hopkins.
I don’t have this disorder. Perhaps if we wait a bit we can get answers from people who do
Is anyone aware of any doctors at Mayo Clinic in Jacksonville that treat Anti MAG neuropathy?
Thank you.
Not me. I have been trying to be admitted to Mayo in Rochester but so far, no luck.
I’ve been diagnosed with anti-mag neuropathy in the last few months. I’ve got an appt in Nov with a dr at emory in Atl.
I hope you don’t mind me asking how your health is (ability to walk, etc) after battling this for over 30 years.
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2 Reactions@kmb205
Also, has anyone else had issues with lower back pain and neck pain who has anti-mag/IgM MGUS with neuropathy?
I had had minor neuropathy symptoms for at least a couple of years, but just since January it has gotten much worse combined with a couple of ER visits, one for excruciating back pain and the other for excruciating neck pain. A CT for the neck pain led to the discovery of an aneurysm in my sinus cavernous. It’s just hard to believe that all of these things are unrelated as I was relatively healthy up until then.
@positivehealth yes they do