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:
:

look for
 

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

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

A minor point: In the USA B12 is measured in picograms/mL (pg/mL)while in Australia the units are picomoles/L (pmol/L). According to the AFP paper by Oh you need to multiply Australian results by 4/3 or 1.3 to get USA values. So your 256 pmol/L is equivalent to approx 340 pg/mL in the USA. Wikipedia gives a similar conversion factor. Your value is still low.

Make sure you are taking at least 1000 micrograms of methylcobalamin per day on an empty stomach as Mrs D recommends. I take 5000 micrograms/day. There are no known adverse effects of high doses.

Martin

Thank you Martin!

Could you please post this conversion in a post on my B12 thread? It would be very useful for the posters here from Australia and NZ, and other countries as well.

http://neurotalk.psychcentral.com/thread85103.html

RlS?
 

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

I am replying regarding my glucose tolerance test, just got my results back and I am not diabetic. I check the results on the internet to make sure, all is good. I have not been checked for vit D yet, my doctor is going to a meeting on Vit D on Friday, he said he will test me after this, so he knows more.

Thanks again everyone

Lesley:hug:

Dont know why he just didnt write teh scrip for you to get tested,, its only one tube of blood,, why do they love to keep messing around when were the ones in pain, at least he would have ther results when he comes back from the meting

Horrible burning feet
 

Hi. I saw your post and I was wondering if you could offer me any advice. I have horrible burning foot pain. I went to my doctor got diabetes test, lupus, lyme disease, vitamin definicency, etc. went to a gastrointestinal doctor and had some kind of sugar test, and some scope thing to see if I had celiacs, then I went to a neurologist and had nerve conduction and EMG plus a MRI of my back. Tomorrow I see a vascular surgeon to see if he can offer some help. Some people say it's a neuropathy, some people say maybe its circulation issues. I changed socks, shoes, started vitamin B shots, lots of things and I get no relief. The neurologist says that they think its small fiber neuropathy and nothing came up on the nerve conduction or some other test they did. They will do a skin biopsy. I also get really dry mouth, lightheaded a lot, I bruise easily and I tend to get out of breath easily even though I don't smoke and I'm a runner. (These things may be unrelated, who knows) Anyway, I need some relief, I can't stand it anymore. Do you have any ideas on what I can do, or who I can talk to? By the way, I tried Neurontin and it's horrible side effects, I'm on cymbalta now but only for about a month so I don't know if that's been enough time to start working yet.

Thanks so much in advance for any advice!

Hi myeamans, I am probably not the best person to give advise, If you post this as a new post their are a lot of people who will be able to give you a lot of advise. I have only been on the cymbalta myself for a month also, my doctor said to give it three months as that is how long it takes to work properly, as I said my back feels a lot better now, regarding burning feet, a lot of people have sugested a product called biofreeze it is available in the US but is hard to get in Australia where I live.
hope this is of some help, it seems this is a long and difficult disorder to get over if you ever do.
Best Wishes

Lesley

Welcome, myeamans. You sound like you could be me, right down to every detail of tests (except for MRI), meds, and symptoms! I've been reading and asking questions here for a few months and still have so much more to learn.

The best thing you can do is make this forum your regular hangout place. Read, ask, give support, and even vent when you need to. You're not likely to find a simple answer and will have to spend a lot of time and effort learning about this condition. You will probably go through several more doctors and medications. You may get better, stay the same, or get worse, but whatever happens, there is almost surely someone here who has already been there. Please come back again and again to learn frrom and with these great folks here.

As for burning, another common tip is to soak in lukewarm water and Epsom salts. Not a complete cure, but calming.

Hi Martin, I have just been looking at the iherbs website, I am a bit slow, so much to take in, I would be very interested to see what else you take. the prices look really good. Thanks again for your help

Lesley.

Very frustrating!
 

Hi Lesley,

Sorry to hear about your neuropathic symptoms. It can be a lonely time not knowing what is happening!

I am from Melbourne and have been going through a two and a half year saga which is still ongoing in terms of unfolding symptoms.

I don't think that Australia is any more confused about some of these issues as anywhere else. I think they are just complicated conditions which often need time to solve, as many on this board have found. Sometimes it is a 'wait and see what else evolves' approach which may then put another diagnostic spin onto the situation.

Obviously the definitive test to really diagnose SFN (small fibre neuropathy) is the IENFD (Intraepidermal Nerve Fibre Density) biopsy and without it the diagnosis is a guess at best. Unfortunately here, Medicare have not taken on board this test yet, even though there are some neurologists and researchers pushing for it. In 2007 the ANZHSN recommended that IENFD biopsies not be approved for clinical use at this stage. This is the link for that document if you should wish to peruse it.

http://www.health.gov.au/internet/horizon/publishing.nsf/Content/6B81AEB3E7EE0001CA2575AD0080F344/$File/Vol%2018%20-%20skin%20biopsy.pdf

Also another link for a more recent and short discussion on the merits of this test, with bibliography:

http://www.aetna.com/cpb/medical/data/700_799/0774.html

Do you have other symptoms?

Megan

Thanks Megan, Yes I know it is going to be a long process, I spent a year thinking I had spinal stenios and was rudly told by a neurosurgen that I did not. I am now on the waiting list to see a neurologist but as you know with Aust medical system it could take a long time. I guess this is why the neurologist that did my nerve conduction test did not suggest that I have the IENFD boipsy and just refered me back to my doctor, my doctor is very good and is quite impressed I think about all the research I have been ddoing, I guess he will get sick of me after awhile, it is a case of going to him and saying this is a new symtom is it PN. he of cource says he thinks it is. I have had this now for nearly two years, but am glad now that I now what is wrong even if I don't know what is courseing it. My symptons include pins and neddles in both feet feels like I have knee hi socks on, burning at times more often later in the day. I get pins and needles in my hands, this is at odd times but wake up at night with at least one hand with pins and needles. It has also gone to my face and head and also tingling feelings in my buttocks which also run up and down my legs. I also have bladdler and bowl problems. I also have back and leg pain. my back pain is a lot better now that I am taking cymbalta, but as I said earlier my legs still ache all the time.

It is good to talk to people who know what you are talking about, other people can not see or feel what is happening to you.

Thank you

Lesley

D Levels
 

Hi, just got back from my Doctors and got my results for my Vitamin D levels, they are low only 48, he said they should be 50-150, he is getting me some
D3 drops and I am to take 10,000 iu a day. I havn't got a print out yet, even thought I rang yesterday and asked the staff if my results were in and they said yes they did not bother to send the results to my own records. My doctor tried to print them out and the printer started to print from A records so he gave up. I should have a print out next week. I have also sent away for MethylB12 from I Herb so I should have them soon.

Thank you everyone for you help and mostly your concern, I am truley gratefull.

Lesley :hug: :hug: :hug:

My Story
 

Leslie21 & myeamans

I also have SFN. Have had it since 2004. Several months ago I started a theraputic project for myself - writing my story to a blog. I have debated back and forth about how much interest it may be to others, but here goes.

It is a work in progress, and still not complete, but I have now added the link to my signature line, so am inviting you to take a look.

P

Hi Plgerrard, Thank you for letting me read your story, I have learned a lot. I also agree with you regarding Restless Legs Syndrome, on doing some research I realised that I do have RLS. I also found out that cymbalta does not help RLS and can make it worse. I am going to ask my doctor about mirapex (sifrol in Australia) and if I can take it with the cymbalta. It would be nce to get a good nights sleep.

all the best to you.

Lesley

Methylcobalamin Availability
 

I am new to this community and I found it by searching for "B12 Australia". I am B12 deficient and I notice that the availability of Methylcobalamin is a topic of discussion. I am able to access injectable methylcobalamin from one specific GP in Perth. The methylcobalamin is manufactured in Melbourne and comes in vials of 10,000 ug in 2 ml. The manufacturer is Biological Therapies and you can contact them on (03) 9587 3948. I found the local GP (my supplier) by contacting the manufacturer directly. The price per vial is about $25 and one vial lasts me about a month. I inject about 0.2 ml every 3 or so days using insulin syringes.

Prior to finding this supply of B12 I used the standard cyanocobalamin injectable for a while and also tried some Methylcobalamin from USA until Aus customs stopped a package getting through (with only 1 bottle!).

Methylcobalamin has assisted greatly with my recovery from depression but it also had some spectacular side effects.
1. I had been diagnosed with Asthma at age 4 and I was on daily medication until 2 weeks after taking B12. Havent had asthma medication since.
2. I had a fluttering upper left eyelid for a couple of years - totally gone after geting onto B12
3. My receding hair began to re-grow on my forehead and in my thinning top area. Confirmed by both my doctor and hairdresser.
4. My fingernails went from chalky to strong and now grow at twice the previous rate.
5. My eysight was deteriorating fast at the time of diagnosis but the deterioration halted and has been effectively steady since.

Thanks DeanD, The Vitamin D I am taking is from Biological Therapies which I got from my doctor, so if I don't get the methly B I ordered from the US I will ask him to order some for me. I am only taking 2,000mcg at the moment but ordered 5,000mcg from the states, I am hoping it will arrive in the next week or so, I am keeping my fingers crossed. In the numb foot book they say anthing from 5,000-15,000mcg a day is ok.

Thanks for you help

Lesley

How common
 

I'm asking myself - how common is this SFN. Do you have any idea? statistics?
Thanks

I'm not sure Amit, I have read that their are over 20 million Americans that have some form of PN, so I guess a lot must have SFPN, there are a lot of people on Neuro Talk that have SFPN. I did try google( I google everything) but nothing helpfull can up. Their would be a lot of people who have it but are not aware of it.

All the best

Lesley

Over the years, I have tried many times to find the statistics, and Leslie you are right, Google just can't find them. From my understanding, there are no statistics on pure idiopathic SFN, because SFN is so often named by its etiology. For example: Diabetic Neuropathy, Toxic Neuropathy, Alcoholic Neuropathy. They are all predominately small fiber neuropathies.

Here is a chart I downloaded some time ago from the Neuropathy Association. It is 22 pages of the types of Neuropathy. I was really surprised by all the varying types and subsets of PN. On the very last page, you will find the Idiopathic Neuropathies. It states that up to 1/3 of neuropathies are Idiopathic. Small Fiber is listed here, with unknown epidemiology.

http://docs.google.com/fileview?id=0...ODFjMTkz&hl=en

Small-fiber neuropathy--
 

--is likely the most common type of neuropathy; most diabetic neuropathy begins with dysfunction of the smaller, unmyelinated fibers that subsume the sensations of pain and temperature (and often diabetes produces autonomic symptoms, which also involves small fibers).

Small fibers are also preferentially affected in a number of autoimmune and toxic conditions.

Certainly, there are many neuropathic conditions that are more global, affecting both large and small fibers. There do seem to be a lot of people, though, who show up with "normal" EMG/NCV studies (the ones that measure larger fiber functioning) that have abnormal qualitiative sensory tests, sudomotor axon reflex tests, or skin biopsies (that measure small fibers). These small-fiber tests are relatively recent, though, compared with those for larger fibers, and many older docs/neuros are not as conversant with the possibility of small-fiber syndromes as they perhaps ought to be.

Hi! I am a newbie. I also have been dx small fibre neuropathy. I suffer like you with the night pain and feet and leg pain,and like you i am experiencing not quite tingling of the scalp but what seems to feel like severe contractions! I am so puzzled about this and can only presume it is a form of neuropathy. I also suffer from Parkinson's and acromegaly. I find life a bit of a bother and struggle but i fight the good fight (with the odd meltdown!!)

Hi Smurff, You have come to the right place Smurff, everyone is so friendly here, there is a new sub forum which has plenty of information which will help you. Hope you are feeling better soon.:hug:

By the way i am from Oz too..live in Perth !

Hi again Smurff, good to talk to a fellow Aussie. Hope you find out the information you need to know. Neuro talk has defently helped me, you don't feel so alone.