Author Topic: Biopsy for small fiber neuropathy  (Read 520 times)

bmonahan

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Biopsy for small fiber neuropathy
« on: February 11, 2019, 11:54:29 AM »
Hello,
I am considering having a biopsy to try to get a definitive diagnoses of small fiber neuropathy.
I already had an EMG, which was negative for large fiber.
Has anyone else had one and what where the results?
If I don't take Lyrica, my feet burn, tingle and I get stabbing pain.  I also get some tingling in the hands, but not as much.
Barbara
Sjogren's, Sicca, mixed connective tissue disease, fibromyalgia
symptoms- dry eyes, mouth, nose, fatigue, Joint pain,  peripheral neuropathy

vrystaat

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Re: Biopsy for small fiber neuropathy
« Reply #1 on: February 12, 2019, 08:22:31 AM »
I had a sural nerve biopsy 10 years ago. It's a small leg sensory nerve with two branches, and is located just below the knee.
The first report, by a trainee doctor was incorrect. A Faculty Member created a 3 page report of small fibre neuropathy.
The scar is tiny, but I needed a general anesthetic.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Carolina

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Re: Biopsy for small fiber neuropathy
« Reply #2 on: February 12, 2019, 01:36:20 PM »
Dear Bmonahan,

My first diagnosis was Profound Peripheral Neuropathy, shown on EMGs in both 2010, and 2013.

Later, by about 2014, I realized that I was experiencing Small Fiber Neuropathy, burning, itching, tingling, stabbing pain in most of my skin, and finger tips.  It was very intense.  It takes me a long time to separate out what is going on for me.  I suppress my pain as long as I can.  I didn't know at all that I had Profound PN until it was diagnosed.

Because my Neurologist knew of my Profound PN, he wanted to try treatment of the SFN with Gabapentin.  I had success with Gabapentin, but it takes 4200 mg a day to stop most of my SFN pain.
Not all of it, but enough to make life bearable.

On my last visit, I discussed the skin biopsy and we decided that the results wouldn't make any difference for my treatment.

I would suggest you might find more information on the Mayo Clinic Connect site dedicated to Neuropathy and SFN, particularly.

This is the link: 

https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?orderby=DESC#chv4-comment-stream-header

Regards, Elaine


« Last Edit: February 13, 2019, 01:40:59 AM by Carolina »
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

irish

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Re: Biopsy for small fiber neuropathy
« Reply #3 on: February 12, 2019, 03:32:43 PM »
I had a nerve biopsy from my thigh many years ago. They are very tricky to do and one needs to have a good surgeon that does a lot of them. I just read up on small fiber neuropathy a little bit and biopsy was discussed. It sounds like these biopsies area hard to do and not always accurate. I wonder if the treatment is any different if you have the biopsy.. Good luck. Irish

Carolina

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Re: Biopsy for small fiber neuropathy
« Reply #4 on: February 13, 2019, 01:48:35 AM »
Dear Irish, I guess the biopsy is the definitive way to diagnose SFN, and the technique may have improved in recent years.

I also imagine that doctors need to be sure of what the condition is before embarking on any treatment. I think the symptoms may vary widely.

In my case I already had profound PN, but I wasn't taking any medications since by the time it was diagnosed the worst of the pain was over!

So when I began to have very unpleasant symptoms of SFN, it was more straightforward to treat it first to see if Gabapentin worked for me. (I'm sure Lyrica was the back up possibility as well).

There are so many kinds of nerve damage, so many causes, I think doctors have established protocols for diagnosis.

Regards, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

irish

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Re: Biopsy for small fiber neuropathy
« Reply #5 on: February 13, 2019, 12:09:25 PM »
I had a muscle biopsy checking for neuro diseases....I did not have the symptoms suggestive of SFN. I do remember that the U of MN had a doctor who did all their muscle biopsies and he was on sabbatical. There was only one other surgeon in the twin cities that they used for these biopsies so I had to be on the list. I guess there is really a trick to doing these so that the tissues/nerves are not damaged enough to damage the outcome. I know mine was done under IV anesthesia cause they need good muscle relaxation. This was back in 2004 I think. Boy, these symptoms and tests go back a long ways don't they....that wasn't even the beginning of testing. Everyone on here knows how it goes. Irish
« Last Edit: February 13, 2019, 06:39:37 PM by irish »

bmonahan

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Re: Biopsy for small fiber neuropathy
« Reply #6 on: February 15, 2019, 11:38:08 AM »
Thank you for your replies.
The Neurologist does not feel it's necessary for me to have the biopsy done.
He states that it would not change my treatment and 30% of those tested come back negative, when the patient is positive.
I love all the information on this site.
Barbara
Sjogren's, Sicca, mixed connective tissue disease, fibromyalgia
symptoms- dry eyes, mouth, nose, fatigue, Joint pain,  peripheral neuropathy

irish

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Re: Biopsy for small fiber neuropathy
« Reply #7 on: February 15, 2019, 01:01:56 PM »
Smart doctor I do believe, Irish