I have such limited energy, and so many appointments, so I try to weigh which ones are really worth my time. I'm sure many of you can relate. Tomorrow I have an appointment with a neurologist who is one of the rare autonomic disorders specialists, although she is in no way integrative or LL.
I have or have had many neurological issues since being sick with Lyme, mostly mild - peripheral neuropathy, paresthesias, roving nerve pains, headaches, hyperacusis, visual disturbances, vibrations, POTS, gastroparesis, temperature dysregulation, dizziness, etc. I am highly reactive to most substances I ingest, and prone to side effects, so I am unwilling to treat these issues with drugs (which she probably will recommend) but willing to try treatments that are dietary, mechanical, herbal (so can be titrated), etc. (which she most likely will not know about
). I also will not submit to most of the testing most dysautonomia specialists order (nerve biopsies, conduction studies, tilt table, etc.) because my conditions are textbook and commonly associated with the conditions I have, and honestly I don't see the value relative to stressing out my body. I already have a neurologist and a POTS specialist cardiologist, and an LLMD who works with both of them. I have an appointment with "the best" dysautonomia specialist in ten months. My peripheral neuropathy flared like crazy for three days in February but otherwise is very minor (painless tingling in hands). POTS flares occasionally but is much better with salt, compression stockings, and hydration. The other symptoms are not especially troubling or active at the moment, fortunately.
What say you? Should I go, just to have established contact in case something neurological comes up before I can see the "better" dysautonomia specialist? Or should I save my energy for the other three appointments (and, you know, life) I have this week? Am I making too many assumptions about
the visit being useless?
The last neurologist I discussed these things with (a year ago) shrugged, said my exam and MRI were normal, and said derisively, "I don't know what half these supplements are, so I can't treat you, since everything you're experiencing is probably just side effects from all these supplements." I know I'm not an easy or straightforward patient, but I do my best to meet providers in the middle by bringing timelines, lists, and anything else that might streamline their onboarding process.
But that probably also makes me seem nuts....
Thanks for weighing in.