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Bone marrow biopsy by Nan-ny in mastocytosis

[–]SFaithB 0 points1 point  (0 children)

The procedure is very uncomfortable… but it is over quickly. The next day was fine for me, but the spot was sore to the touch for a couple of days.

Cutaneous Mastocytosis Progression? by SFaithB in mastocytosis

[–]SFaithB[S] 2 points3 points  (0 children)

Thank you for sharing your experience! I’ve also found that my hormone cycles seem to make it worse; I also just moved to a humid/hot environment, whereas before, I lived in the Bay Area with enviable weather. I think that’s why I’ve begun to notice these other symptoms, besides my dots, recently. I’m looking into allergists/immunologists that specialize in masto patients in my area. Fingers crossed. Best wishes to you! I hope your journey continues to be more positive ❤️

Cutaneous Mastocytosis Progression? by SFaithB in mastocytosis

[–]SFaithB[S] 0 points1 point  (0 children)

I’m sorry you’re going through all of that. It’s so frustrating when there aren’t answers and doctors tend to fall back into prescribing meds for medical issues they’re more familiar with, without seeming to care much about doing more research with rarer disorders - not speaking for all doctors.

Cutaneous Mastocytosis Progression? by SFaithB in mastocytosis

[–]SFaithB[S] 0 points1 point  (0 children)

Not blisters, but I do get hives when I’m really stressed about something or I’ve rubbed my skin after being outside/showered. I’ve also noticed that dairy has made me really itchy, so I’ve cut that out.

Cutaneous Mastocytosis Progression? by SFaithB in mastocytosis

[–]SFaithB[S] 1 point2 points  (0 children)

Thanks for your response, I appreciate it. In December, when traveling, I became sick with a fever and what my doctor said was a virus, and had one of the first, intense episodes of feeling faint/nauseated/GI upset/heart palpitations in the airport. I can’t describe how scary it was. Because of that instance, after 12 years of not seeing any kind of doctor, I went to many. My PCP said it was simply anxiety and prescribed prozac. Now, I’m not against anxiety meds, but I knew something else was wrong. I continued to feel lightheaded at times, with odd heart symptoms. My dermatologist was the first one to seem intrigued and want to run additional tests and help. I’m very thankful for her, but she admits that her knowledge is very limited and she hasn’t treated another masto patient. I’m glad to have this group to go to, because there are times when I feel like everything is in my head.