Have You Been Diagnosed With Or Suspect Neuropathy?

[HopeSprings]

Curious how common neuropathy is among us. I wanted to ask about different types, but the poll wouldn't allow me to post more than 3 questions. So I'm lumping small fiber, peripheral, autonomic, sensory neuropathy all in one.

[peregrine]

My doctor didn't go right out and say the words "you have small fiber neuropathy," but she said that the QSART and my GI tract issues hint it strongly enough that we're chasing down potential mechanisms (e.g. undiagnosed diabetes). So I counted it as diagnosed, even though the "magic words" haven't been said.

[L4UR3N]

I would be very interested in knowing the type of neuropathy that everyone has. There is a link between celiac disease/ gluten intolerance and peripheral neuropathy. Many of us seem to suffer from some type of gluten intolerance, which is interesting.

[stacdliw]

When I was first diagnosed 2 years ago, I was diagnosed with small fiber neuropathy in my feet and ankles by the QSART. The QSART was repeated last October and I no longer have small fiber neuropathy in my feet, but now I have it in my hands. This is not a normal progression with improvement in one area and progressive neuropathy in another. It's referred to as "patchy neuropathy."

I have gastroparesis which my GI believes is due to neuropathy. For the past 18 months, I have suffered from an idiopathic moderate/severe upper epigastric pain that my GI believes is "probably" due to neuropathy and my neurologist says "could be" due to neuropathy. Since I've had every GI and neurological test under the sun and the results were normal, I believe my pain disorder is definitely due to neuropathy.

[HopeSprings]

My autonomic test (forget the name - the one with the electrodes on your hands and feet) was negative for neuropathy. My skin biopsy was positive and my Dr. called it Small Fiber Neuropathy, although the pathology report says consistent with ganglionopathy. So I wouldn't totally trust the autonomic tests. He said the biopsy only proves sensory neuropathy, but my valsalva test results suggest autonomic neuropathy. It's all very confusing. I'm actually going Friday for another skin biopsy to look more specifically at autonomic nerves. This is the lab that does this and their site also provides info about neuropathy if anyone is interested: http://www.therapath.com/Overview.php

[Christy_D]

My son was diagnosed with small fiber neuropathy after the thermoregulatory sweat test. He did not sweat on his torso and his left arm and had reduced sweating elsewhere. We had no idea that he wasn't sweating.

[ramakentesh]

Never been tested. Some doc suggest that small fiber neuropathy is indicative of neuropathic pots but some just think its 'associated'.

[cmreber]

When I did all of the autonomic testing at Mayo my QSART was abnormal and my neuro said I had a neuropathic component.

[TCP]

I had glandular fever followed by ME/CFS in 1984. In 2007 developed peripheral neuropathy in feet and into legs. Progressed to hands and arms and eventually into torso resulting in autonomic neuropathy and POTS.

[looneymom]

Thank you for posting the article Naomi. This is excatly the type of things my son has been describing to me. MAYO did not do a QSART. So now I am wondering why. Is this a test just for adult patients?

[arizona girl]

Hi looney,

I have sfn diagnosed by skin biopsy. I didn't get qsart, as my doctor didn't have the equipment at the time. They do now though, except a TTT. My biopsy along with my TTT results and symptoms where enough to make the diagnosis. My neurologist feels a combination of autonomic tests will uncover autonomic and small fiber neuropathy. He said it is often patchy and are more likely to catch it with qsart and biopsy.

IMHO I think those neurologists who treat autoimmune neuromuscular disease are ahead of the curve on testing and finding sfn. They make an effort to look for underlying cause. Which often is not done if you go to a cardiovascular autonomic clinic. Kinda of the difference between looking at how vs why something is happening. Both ways of looking at it are important.

At first mine was called idiopathic, as first rounds of tests didn't find cause, since then my causes have been found and we are treating them. I am improving with my treatment plan. Dr. Grubb was able to look at my neuro's notes and tests and agreed with the diagnosis. Dr. Grubb went on to also diagnose a hyperandrenergic pots/syncope as I also had standing hypertension/tachy, supine hypo/brady and excess elevations of my norepi on standing. I'm fortunate that my near syncopes take added triggers which I am good at avoiding.

As far as I know these tests are not just for adults. My doctor specializes in autoimmune neuromuscular diseases. His patient's often have both small and large fiber neuropathy. These types of neuropathy are often the results of primary autoimmune disease and sometimes the chemo immune suppressant type meds can also damage the nerves.

Rich got pots was recently diagnosed with sfn through skin biopsy, after which they ordered more testing to see if they can determine cause. He hasn't posted on that yet. He found his doctor through the neuropathy association or at neuropathy.org. My doctor is also a member of that association. Maybe there is a medical center in your area.

[lfreem02]

I was told I have mild neuropathy on the left side of my body. I had a nerve conduction study done, and was also diagnosed based on symptoms. I was told it could be due to gluten, but after seven months of being on a gluten free diet, I didn't notice a difference. I have had improvements to my symptoms, but I think it is due to healing with time, supplements, and exercise.

[looneymom]

What type of supplements are you taking that might have helped you? I have been looking at some studies on fish oil.

[looneymom]

Hey thanks Arizona Girl. I am getting very suspious that my son needs more testing done. I am beginning to understand that this can be mixed in with POTS. I hope there is a doctor near us. Thanks for the information.

[lfreem02]

looneymom - Vitamin B5 (Pantothenic acid), alpha lipoic acid, and magnesium citrate.

[HopeSprings]

For anyone who had a second skin biopsy, how far from the original biopsy site was the second sample taken? Also, did you get the exact same results you did the first time around? I've had a question mark ever since my second biopsy showed as normal. I understand the whole patchy argument, but the two biopsies were within an inch of eachother. And it wasn't like I got a mildly positive result the first time - the report said there was significant.. loss? damage? (I forget the exact wording). It just doesn't make sense to me. I mean they would have to get the exact right spot in order to catch it?

[Birdlady]

I've never had any of the testing done to check for it, but I think I have it.

My rheumy thought I had the traditional form of neuropathy so I had a EMG done. The tech was convinced I had it too because of my symptoms and the way my legs look. However he said afterward that my results were perfect and he had no idea why I had numbness, tingling and other symptoms there. He did not seem familiar with SFN.

Now I am without health insurance, so despite my curiosity, I am no longer getting any testing done.

[Guest wishing&hoping]

Interesting. I've been getting shooting pains up my feet and legs and hips, my sister with POTS was diagnosed with sfn; but my neurologist wouldn't do a biopsy because the EMG's were "normal". I'm planning on going to Vandy with a referral from Grubb. I've fallen 3 times in the last 2 months due to my nonexistent neuropathy:). I definitely have gluten intolerance. Wonder what the connection is between the 2.

[arizona girl]

Hi Adina,

Just wanted to let you know you are right and your doctor is wrong on this issue. Emg checks the large fiber nerve function not the small fibers. A qsart, thermo test and the gold standard a skin biopsy for small fiber neuropathy are currently the best ways to tell if you have it. A combination of those 3 tests along with autonomic tests like a TTT or poor man's tilt are the best work up for it.

I know I have sfn due to a autoimmune issues. I believe that gluten issues can also point to sfn, they are finding many autoimmunes like sjogrens, diabetic neuropathy, insulin resistance can damage the small fiber nerves.

I saw Grubb, he is good,you might want to request a skin biopsy at vandy. I don't know if they do. I've been there as well. My skin biopsy was actually done by a neurologist who treats autoimmune neuro muscular disease. Your basic neuro probably isn't up on sfn. Who diagnosed your sister? Maybe you could see her doctor. That pain you are describing sounds like classic peripheral neuropathy. Peri nerves are also sf nerves. There are several including autonomic and sensory.

Good luck with your quest.

[Guest wishing&hoping]

Thank you for that info and encouragement! Interesting how all this intersects. i have gluten sensitivity, insulin resistance, sicca and probable mito issues. Now to find the right neuro...

[ramakentesh]

Current thought is about 30% POTS patients have small fibre abnormalities on QSART which is believed to suggest a neuropathic POTS.

Three recent studies comparing neuropathic POTS and non neuropathic POTS (the new name being used) suggests that neuro POTS had higher supine heart rates and blood pressure and reported less anxiety and orthostatic symptoms than non neuropathic POTS. I can post the study if interested.

[issie]

Current thought is about 30% POTS patients have small fibre abnormalities on QSART which is believed to suggest a neuropathic POTS.

Three recent studies comparing neuropathic POTS and non neuropathic POTS (the new name being used) suggests that neuro POTS had higher supine heart rates and blood pressure and reported less anxiety and orthostatic symptoms than non neuropathic POTS. I can post the study if interested.

Post away!

Issie

[arizona girl]

No one has ever said that I have neuro pots. Grubb said hyper. However we do know I have small fiber nerve damage - a neuro component, autoimmune and immune deficiency. I've also had pretty high inflammatory markers along with MTHFR homozygous.

I wouldn't fit the neuro pots with the symptoms you listed Rama, as my bp/hr both drop when supine and at times I have also awoken with hypotension and brady.

I am never high when supine. Are you saying neuro and hyper are the same thing?

Yes, post the articles, because there are probably others on here who do fit that set of symptoms.

[Anoj]

No one has ever said that I have neuro pots. Grubb said hyper. However we do know I have small fiber nerve damage - a neuro component, autoimmune and immune deficiency. I've also had pretty high inflammatory markers along with MTHFR homozygous.

I wouldn't fit the neuro pots with the symptoms you listed Rama, as my bp/hr both drop when supine and at times I have also awoken with hypotension and brady.

I am never high when supine. Are you saying neuro and hyper are the same thing?

Yes, post the articles, because there are probably others on here who do fit that set of symptoms.

you sound so similar to me. i just woke up in the middle of last night feeling "low." but i am hyper. don't know what to make of that.

[Libby]

Ooo, rama, yes, please post it!

I was diagnosed by my POTS neuro but just through a physical exam. She pressed a bit of cold metal at various points on my skin, starting at my toes and moving upward, and asked me to tell her when I felt the cold (halfway up my shin).

I had also suddenly developed this really awful burning in my feet at night. They would get very hot, swell, turn an awful shade of red, and usually wake me up at least once a night - I'd have to put an icepack on them or go walk on the cold kitchen tile. But I suspected that it might be because of the prozac I was taking (it had been giving me night sweats for the longest time), so I stopped it. Within a month or two, that aspect of the neuropathy was gone, thank god. At least for the most part. My feet still turn red, usually when my midodrine is wearing off, but only rarely do they burn - and no where near as badly. The majority of the night sweats are gone as well.

Still can't distinguish between cold and hot, but I don't think that's the med's fault. It was there long before the prozac.