Mastocytosis

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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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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

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Awareness #Undiagnosed #ChronicIllness #ChronicPain

It took too long for dx. It took too long for Drs to finally figure me out. Now that I have proper diagnoses after about 20 years it doesn't stop amazing me what a difference it has made in my life to have effective treatments and easier communication with medical professionals.
This month is dysautonomia awareness month. Tomorrow is Mastocytosis and Mast Cell Diseases Awareness Day.
Awareness is so much, both from our self advocacy side of things and Drs awareness of these complex multi systemic conditions so they can properly diagnose and manage them.
Keep fighting y'all. For better treatment, for more quality of life. For a cure. For improvement. For a diagnosis.
For awareness.

#TrickyTrifecta #EDSAwareness #POTS #DysautonomiaAwarenessMonth #MCAS #MastCellDiseaseAwarenessDay

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I'm new to this

#Mastocytosis I was just diagnosed 2 years ago and dont know much about the disease and having a hard time figuring out how to manage it because I just started having a terrible flair up in October that won't calm down. Any time I eat or exercise my face turns red and burns. After I eat my stomach gets huge and I get sick, sometime even while I'm eating. I only eat about 1x a day because im scared to eat and get sick. I get Raynaud's in my hands and feet, feet almost daily. I get hives all the time, especially if I'm sick, I had strep throat 3x last year with these hives. I had to have a Iron infusion because my iron was down to 18, along with my vitamin D was down to 2, many other levels are off all the time too like B12.
I am taking mast cell blockers, pepcid along with 3 other allergy meds, I've gained weight even thought im not eating. If anyone has any advice, I would greatly appreciate it.

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How to take your #meds with you

I have to take my emergency #medications With me at all times.
I am afraid to go outside without them.
And I am afraid no one could help me because they can't find it in my backpack.

So I got this. In there i can nicely store my medications and my injector. It has a hard shell, so the glass bottles can't get damaged.
And its water resistant.

It gives me some #Confidence to go outside, even when I'm alone.

#autoimmune #Mastocytosis

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