Don't you get tired of going to doctors?

My primary or I actually see a PA wants nothing to do with mastocytosis. I asked for a referral to see Dr Patricia Lugar at Duke so they made an appointment with Dr Heather Gutekunst.

I started with panic attacks in my early 20s or so I thought. I went to every kind of doctor over the next 20 years except a vet. At 25, I noticed the spots. My cousin said get it checked out. The dermatologist did a biopsy and diagnosed urterica pigmentosa or mastocytosis. They told me because I was on impramine an antidepressant which contained anti-histamines, it was probably under control. They also brought in all the interns to see me because it such a rare condition. I was told that it could spread to internal organs or even blood stream and be a form of leukemia. Way to scare a 25 yo.

Because I lived in NJ, I got see the expert at that time, Dr Nicholas Soter at NYU. He said I had systemic mastocytosis. My spots weren't too many. Have blood tests every 6 months. Then he sent me on my way.

For almost 30 years, I've treated what I believe is mental illness. Twenty years ago, I was diagnosed with hypo-thyroidism. I just looked for a combination of antidepressants and benzodiphines to bring relief.

I did see a dermatologist 15 years ago. I had another biopsy which confirmed mastocytosis again. I was put on zyrtec and zantac. Had an upper GI which was inconclusive.

Then I went to a psychopharmacologist who was an authority on hashimoto's thyroiditis. He switched my thyroid meds. My anxiety went way down. He said I had auto-immune disease. He put me on meds that allowed me to start living a more normal life.

The past 5 years, the anxiety is under control but I still have times when I don't feel right. More and more I know its physical not mental.
I would get swollen glands in my neck and groin. Watery eyes, runny nose, exhaustion. Episodes of dizziness and vomiting. Lightheaded, woozy, itchy ears, itchy all over. Bouts of nausea and diarrhea for the better part of 30 years.

I'm concerned because my mother and grandmother have osteoporosis and diabetes. My grandmother passed away 2 years ago. She had Thrombocytopenia. I'm worried that there is a connection between mastocytosis and Thrombocytopenia.

So, I saw Dr Gutekunst at Duke on Friday. I'm in NC now. She did blood work, suggested I have another biopsy and come back in 2 months.

Hi Cheryl!

Yes, thrombocytopenia has been connected with masto.  If you google the two, you will find information.  Osteoporosis is well known as caused by masto.  

You said you are Duke, you have two options of doctors who know what they are doing, Dr. Schwartz in Richmond and Dr. Afrin in Charleston.  It might be worth considering doing a bit of travelling.  


I hope this helps!


Lisa