Mast Cell

[Darlene]

i have burning sensations in my arms and back, and all over body pain. i think the cause is nerve damage. what tests can i have to confirm this. skin biopsy? i believe the nerve damage is the cause of my dysautonomia. now i just have to figure out what is causing the nerve damage. my symptoms match those who have mast cell activation disorder. i have brought this up to the dr. and he just says its hard to diagnose. i live in ohio. does anyone know of an allergist that specializes in mast cell? i am will to travel. i think if i can find out whats wrong with me, and get on the proper medication i could live alot better life.

[janiedelite]

the best test for small fiber neuropathy is a skin biopsy. You could ask a neurologist or a dermatologist can also do the biopsy,

[juliegee]

Hi Darlene-

Have you seen an allergist to rule out mastocytosis? That's pretty simple with a serum tryptase blood test. If that is negative, and you don't have any allergies, but still have symptoms of them- you might consider a trial of OTC H-1 and H-2 to see if your symptoms improve. If so, that is an important part of the diagnostic process.

The only mast cell doctor I know in Ohio, Jonathan Bernstein, treats mastocytosis, but doesn't recognize MCAD unless you have laboratory proof- very difficult to get in many cases. The DX he gives MCAD patients (without laboratory proof) is multiple chemical sensitivity. His treatment is to avoid triggers. Usually, not very effective.

Are you taking any antihistamines now? What happens if you don't?

If it makes you feel any better, I often burn in weird spots too. My shoulders have been on fire all day

Julie

[bensman]

I live in Ohio and I saw Dr. Bernstein. Please PM me if you would like any details.

Kate

[juliegee]

If you feel comfortable sharing, Kate, I'd love to hear more about Dr. Bernstein. Was he helpful to you?

Thanks-

Julie

[bensman]

Julie,

I am not certain how much I am allowed to post on this forum. So, this is what I am comfortable saying. It was helpful for me to see Dr. Berstein to rule out some other things and get a baseline tryptase and histamine (he does not order methylhistamine, but my integrative doctor did). However, I am flying to see Dr. Afrin in a couple of weeks. That probably gives you a little insight, but feel free to pm me, too, if you want to read a book!

Have a good day,

Kate

[juliegee]

Hi Kate-

Thanks for sharing. That pretty much confirms what I know. He's a good doc if you have true mastocytosis- otherwise a patient would be better off seeing either Dr. Lawrence Afrin in Charleston OR Dr. Marianna Castells in Boston. I am delighted that you'll be seeing Dr. Afrin. PLEASE share all that you learn!

Julie

[potsmomma]

I live in Georgia and recently traveled 6 hours each way to see Dr. Afrin for possible MCAD and I felt it was definitely worth the time and money. He told me that his MCAD patients often clinically present so differently from each other. I also get burning and stabbing pains in random places. Sometimes my shooting pains only last a few seconds but take my breath away for a moment.

[Godsgal]

I have neuropathy on and off and also the burning sensations. I will tell you its all mast cell activation responses for me. I'm not saying that's what you have but it's definitely what I have. When I take things out of my diet or stop certain medications, these things will get better for me. Maybe something you eat or drink or medication you take is causing it. When I first started MCAD meds, I was taking 80 mg of pepcid a day and I had this terrible then. Finally I stopped the pepcid and this stopped for me. Dr. Afrin is wonderful by the way. By the grace of God and that wonderful doctor, I have a lot more of my life back.