My immunology appointment.

I had an appointment on Monday with an immunologist near where I live, he was recommended on the Mast Cell Activation group on Facebook. He was quite nice and I liked the fact he took the time to explain the medicine behind the things he was saying, being a bit of a medical knowledge junkie, I appreciated that. And I appreciated the fact that he listened to what I was saying, a lot of doctors I’ve seen over the years haven’t really ‘heard’ me. I explained my history, the problem, my extra unexplained symptoms and the issue my neurologist thinks I have.

I asked him whether he thought I had a problem with histamine and or Mast Cells and he said at this stage it would be hard to say but he wanted to do some blood tests to check a number of things but mainly my Tryptase levels, he said that if this was elevated it would indicate that there probably is a problem with my Mast Cells. (I have read that this actually isn’t the most accurate test for Mast Cell Activation Disorder, however we will cross that bridge if they come back as normal.) He gave me a prescription for the meds my neurologist suggested to try me on, but changed the dosage of one to be slightly higher as he said the level my neuro wanted me on was too low to be therapeutic. He said that this is what he would initially prescribe someone anyway, and to try a course for 2 months and see if it made a difference to my symptoms and my headache. If my blood tests come back with elevated tryptase levels he said that would open up other treatment options and we would then discuss what to do next.

I started the course of three medications yesterday, one is an anti-histamine, and the two others are Mast Cell stabilisers. I’m not too thrilled to be back on medication, as I’m nearly done withdrawing from the only medication I was on to help me sleep, but it doesn’t do it’s job anymore so I wanted off of it. I was looking forward to being medication free for the first time in 7 years, but now I’m back on three different meds. The immunologist did say though that I hopefully shouldn’t see any side effects from these meds, so hopefully that will be the case. I hope these meds help my ongoing symptoms that have been progressively getting worse and if this is not the answer to them then I don’t know where to go next. And maybe by some miracle it may help my headache, though I’m not too optimistic about that.

Keep you posted.

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One thought on “My immunology appointment.

  1. Praying that you get relief!!!! Have you ever asked any if your doctors about neurofeedback? It won’t cure you but it trains the brain not to concentrate on pain. It was my daughter’s saving grace! As you know she has had these HAs for >8 years but the neurofeedback gave her control and the HAs don’t rule her anymore. She is thriving in college and I would love to see it help you too. Believe me when I say you two have walked parallel lives. She will be 20 on March 20th.

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