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

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

Be aware that there are GTT and IGT tests for glucose and insulin.
A high 'normal' result could be a red flag for a pre-diabetic condition.
This is often missed or ignored, due to lack of up-to-date information.
(the docs sometimes don't have a clue) Depends on who interprets
the results, and their knowledge of PN and pre-diabetic relationship.

Take that B12 on an empty stomach for best absorption.

Hi thank you all for your help. I saw my doctor again today, my B12 levels were only 256
so I am glad I have gone on B12 supp. I am having a glucose tolerance test done tommorrow so when I get the results I will let you know the results. Thanks again I feel if I am getting somewhere now.

Lesley

Leslie, you made a statement that has me wondering if you might also be dealing with RLS (Restless Leg Syndrome):

I have had occasional bouts of RLS for over 20 years, but with the onset of SFN, I started having nightly bouts of it. I'm not sure, but think that RLS is common with SFN.

You might talk with your doctor about treating you for RLS and see if that helps with the leg pain at night. It certainly helped me.

Thank you plgerrad, my mother suffers from Restless Leg Syndrome her symtoms sound different to mine, my legs just ache all the time and more at night, I don't have the feeling to move them anymore I did when I was on different meds, (Dopth75 and Tramadol) I was also having jerking movements then, I get these now and then now but not all the time. But I will talk to my doctor about RLS and see what he says.

thank you for your help

Lesley