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Old 09-05-2008, 08:59 AM   #1
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Bluegoat HB User
small fiber neuropathy

My husband was recently diagnosed with the above. He was told nothing could be done except pain management. His symptoms are painful burning in both feet. He is presently taking Neuroton but it has provided no relief. Do you have any suggestions - maybe alternative medicine or homepathic aids?

 
Old 09-05-2008, 02:05 PM   #2
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Aussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB UserAussie100 HB User
Re: small fiber neuropathy

Hi Bluegoat, finding the cause is extreemly important, is he seeing a neuro that specializes or is well respected in the neuropathy field ? as it can make a differance in some cases, i know it did for me.
There is a supplement called Benfotiamine which is a very powerfull B1, it has been known to help some people with the burning, even normal B1 taken in divided dosages [ 100mg x 3 times a day] may help some, no guaranties unfortunatly.
There are plenty of other meds besides neurotin he could try, what dosage of neurotin is he on now ? i know some neuropathies that take as much as 3,800 mg a day, you have to come down slowly off neurotin otherwise it can be very dangerous.
I tried neurotin in the begining of my PN, it did nothing for me but give me brain fog, others swear by it, meds are an individual thing.

good luck
Aussie

 
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Old 09-05-2008, 03:46 PM   #3
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Re: small fiber neuropathy

Thanks for your response...he has consulted a well known neurologist and had tissue samples taken, that is how they found out it was small fiber neuropathy. He just started the Neurotin and only takes one a day - I'll verify the dosage. The B1 sounds interesting and will pass that info along as well. Thank you, Bluegoat

 
Old 09-17-2008, 08:38 PM   #4
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Re: small fiber neuropathy

Quote:
Originally Posted by Bluegoat View Post
My husband was recently diagnosed with the above. He was told nothing could be done except pain management. His symptoms are painful burning in both feet. He is presently taking Neuroton but it has provided no relief. Do you have any suggestions - maybe alternative medicine or homepathic aids?

 
Old 09-17-2008, 08:47 PM   #5
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Re: small fiber neuropathy

Am new to this. Diagnosed as small fiber polyneuropathy. No prognosis, told to live with it. Taking gabapentin 1200 to 1800 mg daily. Relieves but don't like it. Has anyone out there been given a prognosis? Would like to know what to expect. Feet feel swollen and burn with burning moving up legs to knees. Hands also feel swollen and burning and moving up to elbows. Sounds familar?

 
Old 09-19-2008, 04:19 PM   #6
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Re: small fiber neuropathy

hi. I was dx with SFN almost a year ago. It has taken a combination of drugs to help my symptoms(lyrica,nortriptyline,trileptal) . Pain has a way of eating at the core of an individual. If you have never had neuropathic pain then you can't really imagine what your friend/spouse is going through. I strongly recommend some aid in mental coping whether through a drug or personal counseling. I was 39 when I was told that it would be a lifetime battle. I do take nortriptyline both for the neuropathy and depression. Not only does SFN offer us pain but also fatigue b/c you are not getting the rest your body needs to b/c you are in pain. A constant cycle. You have to try to get control back if you have this dx. It is so hard to do, but the right combo of drugs can work. I also take B12 shots to address the energy levels. I recently met with a panel of 4 doctors (toxicologist,internist, and two neurologists). The toxicologist did offer a smidgen of hope to me but I have not seen the report yet. I will be sure to share it with you all. Well it is off to see my son play football. Since it is 85 degrees, I have my ice packs ready for my feet when the burning starts.
allie

 
Old 09-21-2008, 08:11 AM   #7
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Re: small fiber neuropathy

Have been diagnosed with the same and was told it was idiopathic neuropathy about two years ago. Have tried all kinds of medications and have ended up with lyrica again. Burning feet, numbness and burning from ankles up the leg, electric shock feelings in my back, numbness in left hand, and now have burning in my lower back down my deriere. My neurologist has come up with "restless buttock syndrome". I am fine while standing and walking but sitting and going to bed has been a great problem. Am on 300mgs of lyrica, percocet for pain and a sleeping pill at night. I am happy to have found this support group that I can relate with people like you that have PN. Talking to someone who is not familiar with this just cannot understand what we are going through. Have only spoke with two people in my town that have PN; and trying to explain to someone about this matter is almost impossible. God speed, Cream78

 
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