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What Kind Of Doc Tests For Mcad & Small Fiber Neuropathy?


Clairefmartin

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HI there! You guys are all so knowledgeable, figured I'd ask what the best type of doctor to see for testing for small fiber neuropathy??? My face and ears and limbs have bee tingling, going numb, and hurting for the last few weeks, and half my face and my one ear especially. It may be vascular, I can sometimes lay on one side and get the sensation to go away, and it seems aggravated by cold temps. I have Raynauds, and it feels similar to that. The docs keep making sure I'm not having a stroke and looking at me like I'm nuts. I'm stumped and really annoyed at this new symptom, I really want to know what it is.

I also fit the profile for MCAD, and asked my hematologist about testing for that, and he referred me on to an allergist he thought may be able to help. I'm back in the same loop I always get in, no one here locally specializes in POTS/Dysautonomia, so I get farmed out to a bunch of docs that end up sending me to other docs. My EP submitted paperwork to Vandi, and is referring me to a supposedly great local Endo who travels around the country lecturing on dysautonomia issues - so he can't see me until June.

Anyways: anyone know what specialty deals with MCAD and Small Fiber Neuropathy?

Thanks!

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My guess is that such a creature doesn't exist- sorry. Mast cell specialists are few and far between in and of themselves, BUT when you throw small fiber neuropathy in the mix- I think that would exclude them all :rolleyes:

I'm DXed with MCAD and am certain I have small fiber neuropathy as well. I was hoping that any good neurologist could test for it, but others here have indicated that you need to go to a major teaching hospital, like Mayo, to be DXed. (If I am wrong, please correct me.)

To further confuse the issue, MCAD presents with many neuropathies. Once that is adequately treated, your neuropathies WILL improve. I have had numb limbs, face, etc. Where are you located? I may be able to direct you to the closest mast cell specialist.

AND, if you find your elusive doctor that treats BOTH MCAD & Small Fiber Neuropathy...I will RUN to get in line behind you :D

Julie

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Here is your closest mast cell specialist- Dr. Lawrence B. Schwartz in Richmond, VA http://www.intmed.vcu.edu/home/divisions/rheumatology.html

He's knowledgeable about BOTH mastcytosis & MCAD, but will most likely be a stickler for laboratory proof when DXing MCA. If you can't supply that, he should still be very helpful as long as the regimen helps you.

Still don't know about the small fiber neuropathy... Hopefully someone else will jump in with that info.

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HI there! You guys are all so knowledgeable, figured I'd ask what the best type of doctor to see for testing for small fiber neuropathy??? My face and ears and limbs have bee tingling, going numb, and hurting for the last few weeks, and half my face and my one ear especially. It may be vascular, I can sometimes lay on one side and get the sensation to go away, and it seems aggravated by cold temps. I have Raynauds, and it feels similar to that. The docs keep making sure I'm not having a stroke and looking at me like I'm nuts. I'm stumped and really annoyed at this new symptom, I really want to know what it is.

I also fit the profile for MCAD, and asked my hematologist about testing for that, and he referred me on to an allergist he thought may be able to help. I'm back in the same loop I always get in, no one here locally specializes in POTS/Dysautonomia, so I get farmed out to a bunch of docs that end up sending me to other docs. My EP submitted paperwork to Vandi, and is referring me to a supposedly great local Endo who travels around the country lecturing on dysautonomia issues - so he can't see me until June.

Anyways: anyone know what specialty deals with MCAD and Small Fiber Neuropathy?

Thanks!

What's the name of the Endo who specializes in Dysautonomia? I've only heard of Cardio and Neuro specializing in it, so I'd be curious is other specialist do, that's what we all need :)

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Rich-

http://f1000.com/thefaculty/member/2528824528596204

Dr. Vinik, who every doctor I talk to around here says is the best of the best, and has a full autonomic lab, but he only sees patients one day a week, hence the wait until june. My cardio is pushing hard to get me in sooner, as I am in really bad shape right now and have never had any autonomic testing done besides a TTT in 2003 (positive!). I'm not sure they even had it back then. Anyways, thank you all, I'm going to research all these docs - Richmond and UVA are only a few hours away!

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The ultimate test for small fiber neuropathy is the skin punch biopsy, which I had done at Mayo Clinic Scottsdale. There are only a few places in the states that read the test, mine went to NY. My neurologist at Mayo had it ordered and done there. They also perform the test at Mayo Rochester, and I would think that most neurologists could help you get this test. I would think that Vanderbilt could do it, too. They take a small punch out of your upper ankle and upper thigh. I was diagnosed via this test.

Good luck, and let us know what happens!

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Thanks guys, I think if I can just get concrete DXs, I can find local or drive-able docs for ongoing treatment. Hoping Vandi can get me in soon, if not, I'll try to make the rounds to the specialists further away in Virginia. This info was all very helpful. My docs have never heard of what I ask about, it's frustrating.

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The allergist I'm going to next week did his fellowship at Mayo, and knows/tests for MCAD! Yay! My right side of my face has been swelling up/burining/turning red, as well as my chest - and my ear & eye get all droopy/weak feeling....I think its some kind of allergic reaction. I'm excited to get some answers. Thanks again for all your input!

Claire

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