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