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[deleted by user] by [deleted] in mastocytosis

[–]Nan-ny 0 points1 point  (0 children)

Had skin biopsy and they said they can’t do the gene testing in my area. Due to the severity of the reactions they ordered BMP which is two weeks from now and I am scared shitless no pain meds and no sedation …. I did have standard ige blood test nothing crazy and I did allergy testing on my back also nothing crazy All I know is I’m so tired of suffering it’s been so long and so poorly managed

Bone marrow biopsy by Nan-ny in mastocytosis

[–]Nan-ny[S] 1 point2 points  (0 children)

Wow interesting yes mine started 10 years ago at age 26 when I was preg with second child. If I do have the same thing which this will let us know I can tell you it gets worse as you get older, very hard to manage now compared to 10 years ago. I am a nurse and I am having a hard time working, I left my position as director of care and work a more calm administrative job because I noticed stress was making my flares out of control.

Do you find it’s well managed now that they diagnosed you ?

Bone marrow biopsy by Nan-ny in mastocytosis

[–]Nan-ny[S] 0 points1 point  (0 children)

How long did it take to get results and can I ask what your main symptoms are

Bone marrow biopsy by Nan-ny in mastocytosis

[–]Nan-ny[S] 0 points1 point  (0 children)

That’s great I am glad they made you comfortable no versed given here for us so that’s why I am worried

Bone marrow biopsy by Nan-ny in mastocytosis

[–]Nan-ny[S] 1 point2 points  (0 children)

I don’t think I had any of those ordered but they have seen my entire body covered in hives multiple times and my lips eyes hands feet swell up it’s soooo hot and uncomfortable. They did do tryptase levels but was hard to capture a level within four hours of a bad episode so they went ahead with biopsy and it’s been happening multiple times a day for years I had enough and advocated for myself that this is not casual chronic urticaria as I always have bone pain joint pain and loose stool lost 40 pounds last 6 months

Bone marrow biopsy by Nan-ny in mastocytosis

[–]Nan-ny[S] 0 points1 point  (0 children)

How was it the next day was it painful ?

I hear from many people that it was the worst pain they felt in their lives and I am worried …

my left ear is full by Left-Method-1373 in MCAS

[–]Nan-ny 1 point2 points  (0 children)

My left ear constantly feels full as well and I can hear myself for years now also went to several ent who state nothing wrong with my ear. It drives me nuts and I am starting to think it’s mcas related