small fibre peripheral neuropathy

lesley21 · 03-03-2010, 01:55 AM

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

JoanB · 03-03-2010, 11:57 AM

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.

lesley21 · 03-06-2010, 02:07 AM

Quote:

Originally Posted by Martin_12

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

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.

Megan · 03-06-2010, 09:52 PM

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

lesley21 · 03-06-2010, 11:17 PM

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

lesley21 · 03-12-2010, 12:50 AM

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

plgerrard · 03-12-2010, 12:05 PM

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

lesley21 · 03-14-2010, 08:45 PM

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

DeanD · 03-18-2010, 06:07 AM

Quote:

Originally Posted by lesley21

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.

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.

lesley21 · 03-22-2010, 12:32 AM

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

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