I was diagnosed at Vanderbilt with severe autonomic failure last June. After severakl months I recovered somewhat and a further workup at Mayo yielded a diagnosis of autoimmune autonomic neuropathy. I pass out 2X month, am extremely fatigued, have delayed gastric emptying, cognitive changes, and heat intolerance. I forced myself to go back to work and start exercising to increase the muscle tone in my legs. I have no social life. I have not been able to figure out what the long term prognosis is. What can I expect over time? I am highly motivated if you have additional suggestions to improve functional staus.
Did the docs at either Vanderbilt or Mayo discuss your prognosis at all? Did you ask them about your treatment options and the outcomes you could expect with these?
Just to clarify, at Vanderbilt, you were diagnosed with PAF, or am I misunderstanding? Did Mayo disagree with the diagnosis of PAF and change it to something else, or simply *add* the diagnosis of autoimmune autonomic neuropathy as an explanation of the cause for your PAF?
Hopefully I can give you a little better feedback to your questions if I understand a little better what your diagnosis(es) is (are) and what you've been told by your doctors so far in terms of treatment suggestions and likely outcomes.
Mayo added diagnosis of AAN as the etiology of the PAF. I asked about the prognosis and expected trajectory, but they were vague. I was really hoping for more recovery than I have had, and still worry this may be progressive.
I think with the cause of the PAF being autoimmune, the prognosis depends on the prognosis of whatever autoimmune disorder is causing it. Have they zeroed in on a specific autoimmune disorder?
Some autoimmune disorders are progressive and would cause continued damage to more autonomic nerves; depending on which disorder it is, there could be potential for this to be halted with the right treatment. I think there may even be the potential for reversal of some of the damage, but don't quote me on that part.
In general (not taking into consideration AAN as the cause), PAF doesn't have a "cure" per se, and treatment is focused at symptom control. This is pretty much the case with most forms of dysautonomia (at least for now, we always hope for the future); however, secondary forms of dysautonomia (where the dysautonomia is secondary to a primary diagnosis—such as your AAN) follow the trajectory of the primary diagnosis. If the primary disorder can be cured, the prognosis for the dysautonomia is very good. If the primary disorder is not progressive or can be halted with the right treatment, one can anticipate the dysautonomia will follow suit. So, in short, the more you can find out about what is going on with you from an autoimmune perspective, the more you will know about your dysauto prognosis.
I'm sorry I can't be more specific. If they haven't referred you to a specialist to try to tease out the autoimmune aspect, that may be something you want to consider as a next step.
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