Mastocytosis

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I’m new here!

Hi, my name is Lidahesa. I am 54 years old and I suffer from Mastocytosis and MCS.

#mightytogeth

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My right leg is dying im convinced

Systemic mastocytosis is trying to kill my right leg. I am loosing circulation and feeling in it as well as severe pain when rolling around on it at night. If i try to move using the muscles on my right hip, I experience severe pain. When it was cold, it felt like the long bone was hollow and freezing. I had to heat it up in an electric blanket to make it feel normal.

To help with this problem, they put me on Prednisone 20mg with tapering off. Only problem is my bones flared up once I got to one tablet a day. Its happened before but essentially all bones feel swollen and painful.

This is a rare disease so my #Depression is because I cant reserch too much about this. All I find is that it causes osteoporosis/osteopenia.

I get results this week from the bone marrow biopsy I had on Wednesday. The main lab test for mast cells was allowed to clot so they are going to need to repeat the procedure.

#RareDisease

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Survived MCTD, now for Systemic mastocytosis

Its been three years since my last hematologist told me I didn't have systemic mastocytosis and I am finally having my next bone marrow biopsy on Wednesday. By now, my spine and pelvis are damaged from the disease and being denied meds to prevent it from getting worse. Heres to research and the new meds that can save my life!!

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Hello. I am looking for a physician to treat Mastocytosis. I live in Georgia between Atlanta and Augusta. Thank you.

No one near me wants to deal with Mast Cell Disease.
#RareDisease

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Post

Hello. I am looking for a physician to treat Mastocytosis. I live in Georgia between Atlanta and Augusta. Thank you.

No one near me wants to deal with Mast Cell Disease.
#RareDisease

Post

Hello. I am looking for a physician to treat Mastocytosis. I live in Georgia between Atlanta and Augusta. Thank you.

No one near me wants to deal with Mast Cell Disease.
#RareDisease

Post

Hello. I am looking for a physician to treat Mastocytosis. I live in Georgia between Atlanta and Augusta. Thank you.

No one near me wants to deal with Mast Cell Disease.
#RareDisease