The early diagnosis of systemic mastocytosis (SM) is important when it comes to bone health. After my diagnosis in 2000, I did not have the proper treatment here in Louisiana. I told my general practitioners what I was diagnosed with, finally, after so many years living undiagnosed. But they were quick to dismiss me and never studied up on my disease. I went 20 years diagnosed but begging for help, especially when the symptoms started getting worse.
Searching for answers
I believe it was around 2017 when I first started having back problems and was sent to a spine doctor. He just diagnosed me with a degenerative disease in my back. I of course told him of my ISM, but no one bothered to listen to me.
My symptoms continued to progress, and my back got worse. I had my fill of doctors and dealing with severe pain in my back, bone pain, gastrointestinal problems and itching so severe I would claw at my skin. All this and more were stemming from ISM flareups.
I could no longer take it, so I researched myself and found MD Anderson in Texas. It took awhile to get an appointment, but once I finally saw a doctor there it was life changing. Not only did they believe me and what I was going through, but they knew all about this disease. It was there that I found out I had severe osteoporosis. This disease had ravaged my bones and affected my teeth.
All those years of begging my doctors to find me a specialist or just read up on what I have could have been prevented, if they had only listened to me.
The right care took too long to happen
Even today there is no one in Louisiana that specializes in mastocytosis. Though I now get my bone treatment done in Louisiana, I need to travel from Louisiana to Utah to get treated for my ISM.
I am on a bisphosphonate that is injected every 6 months. My lifestyle had to change. I am in physical therapy to keep my legs strong, and I try to exercise for my bone health. I take calcium, vitamin D3 and vitamin K2. I am also watched with bone density scans and blood work.
I read an article on SM Companion about healthcare providers’ need for increased awareness when evaluating unexplained fractures. As I mentioned earlier, I was sent to a spine doctor for my back in 2017. Had the doctor taken my disease into consideration and investigated it more, he would have seen I had ISM and could have prevented a severe osteoporosis diagnosis 3 years later.
I am so thankful that I finally found a specialist for ISM and now have a primary care doctor right here in my hometown that took the time to listen to me and research ISM. He now knows enough about ISM that he can understand my symptoms and what I go through. It took so many years, but now I have the best doctors out there treating me. It took too long for this to happen.
If you feel you are not being treated fairly, find another doctor. Search until you meet the doctor who listens to you. If you are diagnosed with any form of SM, please find a doctor who specializes in the disease, even if you must travel out of state. I realize that the cost associated with that takes a large toll financially, but until more doctors specialize in rare diseases like ours, we are limited.
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