[MetroMom]

I'm new to this forum but have been following it for quite some time.

My nightmare started one night 2 years ago when shooting electrical sensations in both feet woke me up from sleep. I went to see my family doctor. She referred me to a foot doctor. After telling him all my symptoms, he diagnosed me with idiopathic sensory neuropathy and prescribed Nortriptyline 25mg. He ordered some blood tests but all results came back as normal.

I had no idea what neuropathy is so I started searching the internet. I came across your forum and learned that I should see a neurologist.

While waiting for my appointment with the neurologist which took months, I went to see a traditional Chinese medicine practitioner. I started taking herbal medicine and discontinued the nortriptyline. I also had acupuncture but this did not stop the paresthesia from creeping up to my legs.

The neurologist did the usual EMG and nerve conduction test and results were normal. The cervical and lumbar spine MRI were unremarkable other than age compatible degenerative changes, no significant compressive pathology.

I’ve also had a Doppler study of the lower extremities and feet ultrasound and everything was normal.

In the meantime, paresthesia (prickling, pins and needles, buzzing, throbbing, itching, ant crawling, electric sensations) continue to creep up from my feet to my legs. My neurologist referred me to a neuropathy specialist.

The neuropathy specialist’s assistant did some tests. On examination, muscle bulk, tone and strength of all tested muscles are normal. Coordination testing, sensory examination, gait and tandem gait are normal. This specialist stressed that I do not have neuropathy and/or radiculopathy. She described me to my neurologist as “interesting” (she probably thinks it’s all in my head). She spent less than 10 minutes talking to me.

I went back to my neurologist as the annoying sensations are intensifying and I could sometimes feel “ant bites” and deep itching. He ordered another round of blood tests but results came back normal. He will see me again in six months.

My neuropathic-type symptoms seems to be progressing. My neurologist has prescribed Gabapentin and I’m trying to hold off taking this for fear of side effects. I don’t know how long I can do this as the symptoms have been bothering me and sometimes wakes me up at night.

BTW, I’m 56 years old. I don’t drink, smoke, nor take prescription drugs. I started taking additional supplements after reading your forum:

A.M.

1 Vit. B12 1000 mcg (Methylcobalamin) – on an empty stomach
2 Wild Salmon Oil 1200 mg
1 Calcium Citrate 315 mg
1 Magnesium Citrate 150 mg
1 Vit. E (d-alpha tocopheryl acetate) 400 IU
1 Vit. D3 1000 IU
2 Tsp Organic Ground Flaxseed
2 Osteo Bi-Flex (Glucosamine, Chondroitin, MSM)

P.M.

1 Wild Salmon Oil 1200 mg
1 Calcium Citrate 315 mg
1 Magnesium Citrate 150 mg
1 Evening Primrose Oil 1000 mg
1 Vit. B1 (Benfotiamine) 150 mg

I work in retail and I’m on my feet all of the time. I don’t know if this is contributing to my symptoms. Should I quit my job?

I’m very worried and would appreciate all your thoughts and opinions. Thank you!

[joby7165]

If your doctor is prescribing a low dose of Gabapentin to start with that may help you as long as it doesn't interfere with the other meds you are already taking. The Gabapentin does have a good track record with many people in tempering the exaggerated pain signals the brain sends which could be the cause of your pain.
In time if successful you can raise your dosage to alleviate the pain even more. Some people are able to handle high dosages of Gabapentin,I take 3,000 mg a day while others can't ( too drowsy,unclear thinking,...etc.)

I hope this helps,good luck

[St George 2013]

You don't mention being tested for small fiber neuropathy. You have the same exact symptoms I have and all my tests were negative until I asked my foot dr to do a skin biopsy. I have zero A and C fibers in my feet.

I'm on 1800 mg of gabapentin (got up to 2700 mg but it made me pretty crazy) and 90 mg of Cymbalta at night. And I still hurt.

Just a thought while you're searching for a dx.

Debi from Georgia

[Susanne C.]

A lot of your symptoms fall into the classical small fiber neuropathy category, which does not always show up on EMG/NCS. Could you persuade you doctor to do a skin biopsy? It is the standard test for SFN today. Even with that, some people do not test positive. This is a frustrating disease, hard to describe accurately and extremely difficult to deal with without a clear diagnosis. A number of people on the forum currently are struggling with that ambiguity.

We share a lot of symptoms, at least that is what I experienced when the neuropathic symptoms really started setting in. I have a hereditary neuropathy and had neuromuscular symptoms from childhood, numbness did not set in until my 30's. I am 52 and have deteriorated a lot in the past five years.

We cannot tell you to quit your job. I think that you will know when it is time. Many of us cannot stand for more than a few minutes without severe pain setting in, sometimes lasting for days. If you could begin the transition to a different kind of work that might be wise, as you may progress to this point.

Rapid onset and progression is usually due to a toxic neuropathy, were you taking any statins or antibiotics around the time of the onset? Both are known triggers for neuropathy.

Are your hands affected at all?

[St George 2013]

Originally Posted by Susanne C.

A lot of your symptoms fall into the classical small fiber neuropathy category, which does not always show up on EMG/NCS. Could you persuade you doctor to do a skin biopsy? It is the standard test for SFN today. Even with that, some people do not test positive. This is a frustrating disease, hard to describe accurately and extremely difficult to deal with without a clear diagnosis. A number of people on the forum currently are struggling with that ambiguity.

We share a lot of symptoms, at least that is what I experienced when the neuropathic symptoms really started setting in. I have a hereditary neuropathy and had neuromuscular symptoms from childhood, numbness did not set in until my 30's. I am 52 and have deteriorated a lot in the past five years.

We cannot tell you to quit your job. I think that you will know when it is time. Many of us cannot stand for more than a few minutes without severe pain setting in, sometimes lasting for days. If you could begin the transition to a different kind of work that might be wise, as you may progress to this point.

Rapid onset and progression is usually due to a toxic neuropathy, were you taking any statins or antibiotics around the time of the onset? Both are known triggers for neuropathy.

Are your hands affected at all?

Thanks for saying it much better than I could

Toxic neuropathy....my SFN started suddenly one month after I finished 6 rounds of chemo (taxol/carbo). My A1C also spiked to 8.7 during the chemo.

Debi from Georgia

[Susanne C.]

Originally Posted by St George 2013

Thanks for saying it much better than I could

Toxic neuropathy....my SFN started suddenly one month after I finished 6 rounds of chemo (taxol/carbo). My A1C also spiked to 8.7 during the chemo.

Debi from Georgia

Debi, we were posting at the same time! I would not have repeated what you said otherwise!

[Electron]

MetroMom,
I'm sorry about your trouble, that sounds worse than me. The specialist you mention did not test you adequately to say you don't have neuropathy. At Mayo Clinic (Rochester) they ran the following tests on me to determine probability of small-fiber neuropathy (hope I am remembering everything):

1) Sweat test--Check that you sweat everywhere.
2) Sensitivity to heat, cold, & vibration.

They have very specialized equipment to run these tests, which was impressive. They did not do a skin biopsy and said that they can get enough info from the other tests that this is not necessary.
Ron

[MetroMom]

Thank you all for replying.

I wasn't tested for small fiber neuropathy. I will ask my doctor to do a skin biopsy.

I wasn't on any statins or antibiotics around the time of onset. My hands are not yet affected.

Toxic neuropathy . . . what tests should I ask for?

I was not given a sweat test but was tested for sensitivity to heat, cold, and vibrations.

I agree that the neuropathy specialist did not give me the adequate tests to say that I don't have neuropathy. I was quite disappointed with her as I expected her to be more thorough and to do more specialized testing.