August 22, 2015 at 12:56 pm #893stagsParticipant
Hi Dr. Diana,
I am in my late 40’s, was in fantastic shape for many years. A few years back, I started having Panic Attack symptoms. This December, I developed gout. Afterwards, I developed bronchitis for 10 weeks, it was horrible. Then a few weeks after that went away, my heart rate would race out of nowhere for a week or so at a time. It went away, only to come back, with headaches, facial flushing, fatigue, brain fog. And, yes, I was diagnosed by a neurologist with POTS. Around that time, I noticed that I was heat sensitive and I was getting hot out of nowhere. Then I realized that I barely sweat. So, I was also diagnosed with anihidrosis.
I had labs taken for pheo and adeno, and carcinoma. The labs were basically normal, and the 24 hour urine as fine. Then I went to an Endocrine doctor. He thinks that it may be a mast cell issue, but he is unsure. He ordered another set of blood test, and 1 more 24 hour urine.
My internist seems confused and less than enthused in finding a diagnosis and treatment. Lord, I hope what ever this is, it is very treatable. But, I am so confused, and afraid, and in part, for I do not know where to look next. What type of doctor should I go to next? Who could confirm that it is Mast cell besides the endocrine doctor? Who could attempt to rule out the nasty disorders like PAF, MSA? They, along with the mastocytosis, and cancers scare me.
Thank you for your time!
MikeAugust 25, 2015 at 3:20 pm #5642Dr. DianaKeymaster
Hi Stags, If we are concerned about MSA and similar nasties, most of us see neurologists who specialize in those conditions. Once our doctors have ruled out the “regular stuff” (conditions they understand and routinely recognize), only then can we dig deeper into “invisible illnesses” including POTS and its related comorbidities (such as chronic fatigue). We now see patients at POTS Care (POTSCare.com) — set up because there are so few treating this condition by looking for underlying causes, rather than symptomatic treatment. The evaluation and treatment for these invisible illnesses can be a long journey, but please know that you are not alone, and that many of us have negotiated out way to the end. Big hug,January 4, 2016 at 11:01 am #5777isaacParticipant
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