Skin grafts as a potential treatment for EM?

Hi everyone. I have posted my story before but I will give you a brief overview and update. I am a 64 year old male, I live in Northeast Victoria Australia and started suffering hot feet symptoms about 5 years ago. This got progressively worse and was self diagnosed as EM about 3 years ago. The diagnosis was confirmed by two Vascular Specialists last year. I have had most of the treatments given to you all to no avail. The stress this condition has placed on myself and my family and friends is enormous. Last year I had had enough and was close to suicide. I am not suffering with depression, this was due to my non-Quality of Life alone. The constant theme of pain management by the medical profession without any consideration of cure frustrated me greatly. No significant research is being done to reverse the symptoms of EM.

Finally I decided to go down a different path. If I was considering death as my last resort, I should look at anything that could offer hope to me and other sufferers. Because I only had EM in my feet this made amputation a possible 'cure'.

I raised this with my wife, family, friends and doctor. With the exception of my doctor everyone was prepared to offer constructive contributions and over a period of 6 months my family and friends became supportive of the decision. The medical profession sent me to numerous psych evaluations (which I passed) and under considerable duress finally decided to operate in December last year.

I am now a bilateral below knee amputee, otherwise healthy with a whole new outlook on life. I am not putting my 'treatment' out there as a possible cure. But I am now able to put a focus on the location of this insidious condition. Medical professionals vacillated between the brain, the spinal cord and the physical area of presentation. The fact that nearly 12 months on I am sitting in a warm room on a 35 C day without aircon, fans or ice water, able to go outside shopping and see friends definitely points to the condition being due to damage at the site of presentation.

Rather than suggest my extreme treatment (which is not possible for all sufferers) I would like to offer an alternative, less invasive treatment. I am sure that EM is an extension of Peripheral Neuropathy and is worse in people with gene mutation. Nerve cells become damaged and then repair in a corrupted manner. This cycle continues and the symptoms get worse. I suggest interrupting the cycle, possibly with skin or nerve transplants in the hope that we can train the nerves to regenerate normally. The hospital which conducted my surgery is supposedly researching my feet and blood and spinal tap. I have heard nothing of their progress despite calls and am not optimistic of their resolve. The research is being done by the Pain Management Department and is not going to be focused on a cure. We all know that pain relief is difficult and doesn't alleviate appearance or ability to walk much.

If any one can see any other possibilities resulting from my treatment please offer them to your doctors and medical specialists. It is your health and you should be the one controlling it. I believe a solution to EM is close but it will need the strong cooperation of the patients to push forward. I am happy to communicate individually or on forums to discuss my condition and ways to cure EM and any other serious. unknown ailments. I am not a medical professional, just someone who has put a lot of research time into my condition ( what else can you do with your feet in a bucket?).

Please encourage your doctors to 'look outside the box' (that's a prescription box) and consider less invasive techniques than mine. EM can be stopped or at least put in remission, I am living proof.

My best wishes to all, Mal Wilson

Hi Mal, thank you for sharing your story with us. I'm sorry that you had to resort to such a radical solution but delighted that you had the support of your wife, family, friends and doctor together with an outcome that you're happy with and has returned your quality of life. There is so much about this disease that isn't understood but it is only by patients like yourself putting themselves forward that will, as you say, lead to a solution being found. Please keep in touch so that we know you're doing well long term. Kindest, Jules

Thank you for all your info! You’ve answered many questions we’ve been searching for! My husband has been suffering since 05-2014 and is rapidly getting worse. He has had the same thoughts and has been wanting to amputate as well!

How long has it been since you’ve amputated? And do you have any flare ups now? We are wondering if it will pop up later on somewhere else?

Thanks for your thoughts. I had my surgery on 16th December 2014 (nearly a year ago). I went from not being able to do anything and living in a cool room with my feet in a bucket, bleeding on the floor to now being able to go out in the sunshine. I have not had a flare or anything remotely like EM symptoms since surgery. I am not going to pretend that it is an easy road but my attitude has been 80% positive and I am enjoying the challenge. I emphasize that this has started an accumulation of evidence only. The medical profession needs to become aware of how symptoms present and look at less invasive methods of treatment first (not more drugs unless they can be proven to restructure damaged nerves). Look to such things as B group vitamin supplements, they are the nerve building vitamins, and TENS therapy properly used can be helpful. Cymbalta 60mg is also helpful in reducing nerve pain for me. I am happy to discuss my treatment methods, positive and negative, and it is helpful to keep good chronological records of treatment, results etc to keep doctors informed and not putting you back on the roundabout.

Of course we don't know whether my EM will return but so far so good. I suppose I am like a cancer patient in remission. The main thing is I sleep normally, have a much improved home relationship and feel that life is precious again. I am becoming obsessed with the desire to work to improve disabled facilities and prevent the waste which I saw in the hospitals I was in. So much more can be done for people if we change our focus from just pain management drugs to recovery.

Thinking of all of you out there, Mal Wilson