I lived more than 20 years with uncontrolled symptoms of indolent systemic mastocytosis (ISM). Prior to that, I was searching for several years for a diagnosis. Finding out what I had gave me a name for this disease, but it in no way changed the way I was living life, fighting a battle that would end up lasting a lifetime.
In 2021, I finally found a medication that helped me control my symptoms. And life has been so much better. I do have several health issues that I deal with daily, but the symptoms from the ISM have been manageable until recently. I started having abdominal pain six months ago and have been recently diagnosed with diverticulitis. Two rounds of antibiotics, and the pain and discomfort is still there. Recently I was referred to a gastrointestinal specialist.
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She is running tests on me, including the dreaded colonoscopy in six weeks once my gut heals more.
But during these months of fighting diverticulitis, I noticed that my ISM symptoms are returning. They were not bad at first, but I could tell something was happening. Symptoms such as bone pain, brain fog, flushing and itching are getting worse. I contacted my doctor who treats my ISM, and he sent me for labs. My blood work is perfect.
I don’t go to see my doctor until November. He is waiting until then to check my blood work again. In the meantime, I am experiencing more ISM symptoms, and they seem to be getting worse. I feel like I am back begging for someone to believe me. That’s how I lived until my initial diagnosis in 2000. I went from doctor to doctor trying to find out what was wrong with me. No one took me seriously until my symptoms presented on my skin.
‘I need someone to believe me’
I am feeling just like that again. Like I am not believed. My symptoms are back, and they are getting worse. I know it is from the stress my body is under with the diverticulitis, but I need someone to believe me.
Since my blood work looks great, and my tryptase is low, I am not being taken seriously. I am taking pictures of when I flush or my urticaria pigmentosa flares up. Those are the only two symptoms that you can see. I am documenting bone pain, brain fog, headaches and a host of other symptoms I am currently experiencing. I am also documenting what I was doing at the time to account for my triggers.
As of now my triggers seem to be stress, smells and food. I don’t feel good, and mentally it makes things worse when you know doctors don’t believe you. I am the one living in this body. I know what I am experiencing. I don’t care what my blood work says. I am exhausted, worried and feel lost now. I feel alone. My husband, family and friends understand. They know I am currently experiencing symptoms again. But I need my doctor to take me seriously. Why is that so hard?
I know there are patients right now who are dealing with this same issue, and I offer this suggestion. Don’t give up on yourself. You are the one living this. Keep going! Write down everything so that you can explain to your doctor what you are experiencing and what you were doing at the time. If you still are having problems, then it might be time to find another expert and switch doctors. You will know what is right for you. Believe in yourself, even when there are those around you who don’t. If you don’t advocate for yourself, no one else will.
