New diagnosis

[martino]

Hi

After a nerve conduction test I was told that I had small fibre neuropathy. The test was requested by a neurologist and I see him again in July. I cannot see anything about this neuropathy and wondered whether within your Association anyone has this?

[Palomineo]

Sorry, i have never heard of any tests that can detect neuropathy... It was diagnosed in my case by the symptoms! Numbness during the day when i do too much with my hands or feet, and then really bad pain like burning or something at night... Usually for me, most of the night. Also i had been type 1 diabetic for close to 30 years!

Perhaps this is a new test they are trying? Im curious what it entailed?

Thanks

T

[martino in reply to Palomineo]

Hi

It was conducted at the Institute of Neurology in Queens Square in London. I had electrodes on my legs then had to indicate wether I felt cold or heat as impulses were sent to my feet. It was when I couldn't feel cold that the person doing the tests concluded I had small fibre neuropathy. I had thought that the sensations I had were connected to the RLS. Hope this makes sense!

[Gerbils3433 in reply to martino]

Yes I had the same tests done plus a biopsy ( a small piece of skin removed from leg) with Prof Anand at the Hammersmith Hospital in London. From this they discovered I had small fibre neuropathy. I now live in Spain and have had more conduction nerve tests done over the years but no change. Mine is toxic neuropathy caused by chemotherapy for breast cancer. My oncologist kept saying for two years that the chemo drugs they gave me do not usually cause neuropathy. I've now had this condition since 2003 and have had little relief. I now walk with two sticks when I am away from my home as my feet are numb and therefore have no idea where I am walking. It would be very easy to fall and I have tripped a few times. Have been through all the usual drugs Lyrica and Gaberpentin. I currently take one tablet twice a day of Targin20 mg. It really helps with the pain but this drug is oxycodone and it is very addictive and in a way I would love to come off it because if I forget to take it, I have the most horrendous withdrawals within an hour or so. I've discussed coming off it with my Drs but they just say that it works for you and you obviously need it. I just wonder what it's doing to me long term!

[martino in reply to Gerbils3433]

Sometimes I think I have a lot to cope with but reading your account perhaps I am not too bad after all! I was struggling this week so the doc has increased the Gabapentin from 1800 to 2700. All well and good and I had two good nights. Last night inexplicably I couldn't settle. I take 1 mg of clonazepam so perhaps tonight a tip on the head (not too hard!) may help. Bless you!

[Shorejds]

This is what my wife has. It hits the small nerves farthest from the spinal cord first....feet, hands. It can be progressive or not. There is no cure just many ways to try and treat symptoms of numbness, tingling pain etc. For us pills like Lyrica and Gabapentin do not work so she soaks her feet and uses a ketamine cream. Your doctor should offer suggestions to try. Good luck.

[jbergum]

I had my tests done here in alberta. i didn t realize there were different kinds/levels. i was told that it could be idopathic or maybe due to diabetes.

[suzey26j]

I have it but I am no help , had conduction test got the same small fibre neuropathy ,,I hav'nt seen anyone yet they say apart from pain medication there is nothing they can do .ps.im in uk Suzey X

[tcarlsoncp]

I had the test too, but on one leg especially, it was extremely painful. We somehow got thru the test, and he just told me it was neuropathy. No cure, gabapatin, tramadol, nothing else recommended. I take the pills twice daily just to appease the doctor.... all he wants to do is increase dosage, and I would rather be more alert during the day. Ad it is, it o my helps me sleep for about 30 min. Sorry Can't suggest anything else.

[martino]

Thanks. As far as I can see pain management is all that is offered. I have Restless Leg Syndrome as well and my neurologist did not like the idea that I had so much pain from it. Now I can ponder on whether the pain is from the RLS or the neuropathy and of course the answer is entirely academic. Like you I have tramadol and Gabapentin and also use a Rotigotine patch. I still get the pain but don't think I want to try anything else. Best wishes Martin

[Patmcf1]

Anyone researched vitamins or food problems for PN?

[Mmenergy in reply to Patmcf1]

Hello

I have severe sensory neuropathy which is a component of my condition - Canvas. I take Lyrica which does help. I was basically useless beforehand. I also take 50 mg. of tramadol and marijuana to take the edge off. Lots of omega fish oil, wheat germ oil and lypoic acid too.

It took time to find a regiment I could function with, so I'm grateful......but do not want to be on Lyrica long term, expensive too. Hope to get the correct strain of medical marijuana in the future when more doctors here in upstate NY are licensed.

[He-en]

I have small fibre neuropathy diagnosed by nerve biopsies so it is definite. I was b6 toxic. I will not take the drugs on offer as they’re addictive and not always helpful and also have very bad side effects.

I am taking super r lipoid acid and magnesium.

Loads of itching still and takes my system ages to get going every day. Seriously badly affected by the cold. Does anyone else find this?

Helen