small fibre peripheral neuropathy
 

Hi I have been told I have small fibre peripheral neuropathy, It started about two years ago with back and leg pain then I noticed I had tingling in my right foot and could not move my toes very much. doctor said I had spinal stenios but was then told I did not. It has now gone to both feet and sometimes my hands are affected as well, my toes feel like I have a band wraped around them and have started to feel the burning that people talk about although when the temp is cooler my feet get cold really easily. I have been put on Cymbalta which has helped with the back pain but am still having a lot of leg pain and I am having trouble sleeping at night, I have also staarted to have tingling feelings in my head, has any one had this. I live in Australia and their is not much information here about it so I sent away for some books from the USA. I am on the waiting list to see a neurolgest but could talk a long time. thanks for listening to me.

Lesley21:
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megan. she is from austrelia too and can give you more information. I think she also has small fibers neuropathy.

How old are you? did you do all kind of blood tests for diabetis, autoimmune illnesses ect.?

what about B12?

I have had blood tests done, B12 is OK but I think I will ask for a glucose test, I have been doing a lot of searching on the internet and have heard different vitaims can help, so I will be looking for these. thanks for you help

I am 53 years old, I have had blood tests done, B12 is fine, but will ask about glusoce tests for diabetis, I am looking into vitaims to help so see what I can find. the only real test that has been done is the nerve conduction study. and he said from that I had small fibre peripheral neuropathy. thanks for your interest.

Lesley21

Hi Lesley

I live in Sydney and have small fibre peripheral neuropathy (sensory only). My B12 was tested and was also fine, but I am 99.99% certain that my PN was caused by a B12 deficiency. The numerous neurologists I saw could not find a cause and, apart from one young registrar at the RPA hospital in Sydney, all laughed off my B12 suggestions. Blood tests for B12 are very unreliable. People with high readings can be deficient and people with low readings can be OK. The best way I know to test for B12 deficiency is to have blood tests done for methylmalonic acid (MMA) and homocysteine (HCY) before you start taking any B12 supplements. A high MMA is quite specific for B12 deficiency, and HCY may be high as well unless you have been taking folic acid (many breakfast cereals have folic acid added). Your GP can arrange those tests for you. You may not have B12 deficiency, but if you do it is really important to start on B12 supplements as soon as possible to limit the damage to your nerves. You can get B12 (1000 micrograms cyanocobalamin) made by Nature's Own from Woolies and Coles. A different form of B12 called methylcobalamin is better but is unobtainable at reasonable price in Australia. I get methylcobamamin (5000 micrograms) made by Jarrow from www.iherb.com. That is the form recommended by many on this forum. Buy only 1 or 2 bottles at a time or else the very helpful Australian customs may not let it in. I also take a few other supplements, and my PN has improved a lot. I can tell you what else I take if you are interested.

You will find lots of useful info on this forum so take some time to read it all.

I hope this helps

Martin

thanks Martin, I will be looking in to B12, I saw my doctor today and he has suggested some vitaims but these do not have B12, so I will have a look when I go shopping. I will also ask what was tested in my blood test.

thanks again

lesley21

Please...

Never accept results of B12 from doctors as "fine" or "normal".

Interpretation of the results is still being done based on old lab ranges in many instances. You should have at least 400, and preferrably 500 or above to be "normal". Even then borderline patients could safely still take supplements.

Here is an article explaining:
http://www.aafp.org/afp/2003/0301/p979.html

Patients can show neurological symptoms long before anemia develops with low B12.

I brought some B12 today from a naturapath at the health food store, he seemed to know what I was talking about. I have a two month supply so I will see how they go. I will also look into getting the vitiams and minerals that my doctor suggested.
thanks again for your help

lesley21

Lesley

The AAFP paper by Robert Oh recommended by Mrs D is very good. I have several others on B12 if you are interested.

There are many other potential causes of peripheral neuropathy. You need to see a good neurologist who has a special interest in peripheral neuropathy. Unfortunately I don't know of one in Queensland or anywhere in Australia. Paul Golding who runs this website http://www.paulgolding.id.au/ is in Queensland and might be able to help you.

Peripheral neuropathy can be an early symptom of some diseases, e.g. coeliac disease and diabetes. Coeliac disease (intolerance to gluten) can cause PN without any other symptoms. There are quite good blood tests for coeliac disease. As Amit said, a good neurologist will also do tests for all sorts of autoimmune diseases and diabetes. To test for diabetes you need to have a proper glucose tolerance test (a five or seven hour test with multiple blood samples and both insulin and glucose measurements), not just a fasting blood glucose.

Some people seem to get relief from high dose methylcobalamin (5000 micrograms/day) despite not having proven B12 deficiency, so it is worth trying even if your methylmalonic acid blood test is normal. If you want to know what is going on regarding B121 it is important to have a blood sample taken for a methylmalonic acid test before you take any B12.

Martin

Hi Martin 12

Thanks again for your information, methylcobalamin is what the naturpath gave me. regarding a neurologist, I saw one when I had my nerve conduction study, but he refered me back to my own doctor, recommended medication some of which are too expensive and said it was small fibre PN. I have had a glucose tolerance test done before but that was a few years ago, I was not a diabetic then,but will press my doctor for another one. I will do anything to get rid of al this tingling and pain.

thanks again

Lesley