Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking " on fire ". My feet have similar issues. This is just one big Ick. Boo

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

@dont and others...
What does 'FDA cleared' mean? --- Class II and Class I medical devices are usually "cleared" by the FDA, which means the manufacturer can demonstrate that their product is "substantially equivalent to another (similar) legally marketed device" that already has FDA clearance or approval. Those already-cleared products are called a predicate.

Hope it works for you but I'm a bit skeptical.

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Ooops, forgot to include the names you included in your response so guys, please see my reply to John's post about FDA "cleared". Warmest wishes, Sunnyflower @dont @jesfactsmon

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@affliction313

I was diagnosed with periphal neuropathy about a year ago. I am not diabetic or even close, I do not drink often maybe a drink once a month, I have had the elctro stuff done everything looked fine....numerous times blood work has been done. and they can not figure out a cause. I am only 42 and very active this has really changed my lifestyle. They have basically said we don't know why this is just going to be a nuisance for the rest of your life. I was on 1800 mg of gabapentin and that did nothing now I am on 400 mg of lyrica a day which doesn't seem to help either. All they keep saying is oh your a bigger guy it may take more medicine for it to work on you. I am trying to find a better answer than that is there any sort of doctors, clinics, ect. that specialize in this sort of thing?

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Taking 50mg of Benadryl a few hours before bed helps me, I take it at 6, bed by 11. If I know I'm going to have a busy day, I take 800mg ibuprofen before activity. Doc wanted to put me on gabapentin 200mg at night, after researching it, I decided not to try it. I have more fatigue and muscle tightness more than anything. An electric blanket also helps. I switched to the doctor Scholl's brand of shoes, made a huge difference in the leg pain.

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@strikeanerve

Taking 50mg of Benadryl a few hours before bed helps me, I take it at 6, bed by 11. If I know I'm going to have a busy day, I take 800mg ibuprofen before activity. Doc wanted to put me on gabapentin 200mg at night, after researching it, I decided not to try it. I have more fatigue and muscle tightness more than anything. An electric blanket also helps. I switched to the doctor Scholl's brand of shoes, made a huge difference in the leg pain.

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Hi @strikeanerve looks like you are new here. Do you think your fatigue and muscle tightness are peripheral neuropathy (PN) related? Do you have other symptoms? What is your overall history with respect to PN? My wife has had PN for 6 years (caused by chemo) and I have been her advocate, online researcher as well as sometime caregiver. She's overall much better now health wise than she was after chemo but her PN is still quite bad. She hated gabapentin and now does not take any drugs for pain. Best, Hank

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@strikeanerve

Taking 50mg of Benadryl a few hours before bed helps me, I take it at 6, bed by 11. If I know I'm going to have a busy day, I take 800mg ibuprofen before activity. Doc wanted to put me on gabapentin 200mg at night, after researching it, I decided not to try it. I have more fatigue and muscle tightness more than anything. An electric blanket also helps. I switched to the doctor Scholl's brand of shoes, made a huge difference in the leg pain.

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@strikeanerve
Good morning,
Welcome to Mayo Clinic Connect.
I noticed you’re taking Benadryl to help you sleep. I don’t know whether you’re taking this long-term or not however it wasn’t designed to be taken long-term for sleep. The particular drug classification Benadryl belongs to has been associated with dementia. Not all drugs in the classification Benadryl belongs to has been directly linked to dementia with Benadryl being one of these. You may want to discuss the continuation of Benadryl with your physician and perhaps your pharmacist especially if you are taking it on a regular basis.
You also mentioned that the research you did persuaded you to not take the drug Gabapentin. I was just curious why exactly you decided against trying this medication.
I took the maximum dose (3,600 mg) of this medication only I took the brand name Neurontin. It didn’t help my neuropathy or my seizures. My brother takes the same dosage of Neurontin and gives him relief.
Take care,
Jake

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@jesfactsmon

Hi @strikeanerve looks like you are new here. Do you think your fatigue and muscle tightness are peripheral neuropathy (PN) related? Do you have other symptoms? What is your overall history with respect to PN? My wife has had PN for 6 years (caused by chemo) and I have been her advocate, online researcher as well as sometime caregiver. She's overall much better now health wise than she was after chemo but her PN is still quite bad. She hated gabapentin and now does not take any drugs for pain. Best, Hank

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@jesfactsmon
Good morning,
You mentioned your wife hated gabapentin. How did it affect her?
take care,
Jake

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I haven't taken gabapentin, after reading several reviews it does not seem effective for many people and the noted side effects are undesirable to me. I'm young, dx at 35 and considering I will have this for a lifetime, I'm weary of using it.

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@jakedduck1

@jesfactsmon
Good morning,
You mentioned your wife hated gabapentin. How did it affect her?
take care,
Jake

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@jakeddduck1
Hi Leonard, nice to hear from you!

She had intolerable symptoms. Dizziness and balance issues, foggy brain and memory issues, intense hallucinations in the nighttime. The dizziness was the worst. She couldn't take it. She also did not get any pain relief, although she did not take it longer than a couple months. Are you taking gabapentin?

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@jesfactsmon
Good morning or perhaps afternoon,
Hi Hank,
I have been taking all sorts of seizure medications for over 50 years and I used to take Neurontin the brand name of Gabapentin but it didn’t help my seizures or my neuropathy so I discontinued it.
Most seizure medication side effects resolve within weeks to several months. i’m surprised her symptoms didn’t improve within two months. hallucinations are very rare with gabapentin. Was your wife taking other medication/s at the time? Another reason for side effects is when the medication is initially started to quickly and/or at to high a dose and the same thing with any incremental increases.
I'm not surprised about the dizziness, balance,
brain fog or memory issues. Those are all very common side effects from seizure medications. However they do usually resolve at least to some degree after a period of time. The hallucinations however really perplex me. Did her doctor by chance have anything to say about the hallucinations?
Take care Hank & Mrs Hank,
Jake

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@jesfactsmon

@jakeddduck1
Hi Leonard, nice to hear from you!

She had intolerable symptoms. Dizziness and balance issues, foggy brain and memory issues, intense hallucinations in the nighttime. The dizziness was the worst. She couldn't take it. She also did not get any pain relief, although she did not take it longer than a couple months. Are you taking gabapentin?

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@jesfactsmon Hank, I had no idea Linda had such an intensely bad reaction to Gabapentin. So frightening! Terrible! Lori, with love

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@jakedduck1

@jesfactsmon
Good morning or perhaps afternoon,
Hi Hank,
I have been taking all sorts of seizure medications for over 50 years and I used to take Neurontin the brand name of Gabapentin but it didn’t help my seizures or my neuropathy so I discontinued it.
Most seizure medication side effects resolve within weeks to several months. i’m surprised her symptoms didn’t improve within two months. hallucinations are very rare with gabapentin. Was your wife taking other medication/s at the time? Another reason for side effects is when the medication is initially started to quickly and/or at to high a dose and the same thing with any incremental increases.
I'm not surprised about the dizziness, balance,
brain fog or memory issues. Those are all very common side effects from seizure medications. However they do usually resolve at least to some degree after a period of time. The hallucinations however really perplex me. Did her doctor by chance have anything to say about the hallucinations?
Take care Hank & Mrs Hank,
Jake

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@jakedduck1 @lorirenee1
I don't remember what he said about the hallucinations and I doubt Linda does as she has not mentioned it ever. Her hallucinations were not scary but were very real seeming. She described them as cartoony bubble men floating around her and making faces and doing various antics. She said had they been scary critters, since they were so real, pretty much anyone would probably stop the gabapentin for that alone. She found it a strange phenomenon. I'm not sure I ever heard before that if you keep taking it long enough some of the symptoms subside, and I'm not really sure we knew all that much about the drug while she was taking it. But it was over two years ago now and ancient history in our book.

Best to you both, Hank

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