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Hi, my name is Lidahesa. I am 54 years old and I suffer from Mastocytosis and MCS.
#mightytogeth
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Hi, my name is HeatherBennett.
#MightyTogether #Anxiety #Depression #Migraine #Fibromyalgia #ADHD #PTSD #OCD #Mastocytosis #HypermobilitySyndrome
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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.
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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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