I have been diagnosed with Autoimmune Autonomic Neuropathy. I also have MGUS and possibly small nerve neuropathy related to MGUS. I currently see a hematologist/oncologist in Georgia. I am looking for a doctor that understands these conditions in Texas, preferably Dallas or Houston. I have been ill since 2001. My condition is slowly progressing. Thank you
If you're not thrilled with that option, I don't have a long list of suggestions, unfortunately. There are no known full autonomic testing clinics west of Minnesota (Mayo's Rochester location only) or south of Tennessee (Vanderbilt). Autonomic specialists (even without access to full testing clinics) are few and far between in the US (indeed, globally), and the West and the South seem to be particularly difficult areas of the country to find knowledgeable/experienced autonomic docs. A significant portion of dysautonomia patients from these areas end up traveling out of state to one of the big-name clinics or specialists at some point in the course of their illness/treatment.
However, many patients fortunately *are* able to find care closer to home and I hope this will be the case with you. The fact that more doctors are starting to get certified in this subspecialty is very promising, and offers patients a means by which to assess whether docs are qualified to diagnose and treat these disorders. If you do go to the doctor listed in the link above, we'd love to have some (constructive) feedback on your experience to help guide future patients.
If you decide to look for help farther from home, here's the information on the autonomic clinics at Mayo, Vandy, etc.:
One thing you want to consider wherever you go is the hospital's ability to work in an interdisciplinary manner to address all of your health problems and not just the autonomic/neurology aspect. You'll definitely want a place that has a strong reputation for autoimmune and hematology as well, so they can treat you as a whole person.
Please let us know of any other questions you may have, and welcome to the forum!
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