Can anyone give information about the rare complication of diabetes known as amyotrophy?

The very rare complication of Diabetes Amyotrophy.... This is my story. Please publish this true story to help both diabetics and medical professionals recognise the symptoms:

I have had diabetes type 2 for 5 years and was managing it well with 3 x 500mg Metformin per day and diet and exercise. But unfortunately just before last Christmas 2008 I started to experience severe pain in both thighs (quad muscles) and both knees. My fist visit to my GP explaining my symptoms resulted in me being dismissed as just a few aches and pains. In fact my GP actually said, 'stop worrying', there are not enough red flags for us to worry about, it's just aches and pains we all get from time to time.' So my pain continued despite high doses of painkillers. Then I noticed my legs felt like they were giving way from under me. I started to have difficulty walking.

Somehow I managed to make my eldest sons wedding on January 3rd 2009, just about getting through the church service and the meal and wedding speeches afterwards. I knew I wouldn't last the evening 'Disco entertainment', as I was in so much pain. I gave my apologies and made my way to our hotel room which was fortunately in the same building. I had only brought paracetamol tablets with me, so the pain was unbearable. So much so I was crying alone in the bedroom, rubbing my legs in despair, hoping my wife would come from the wedding reception to help me; which she eventually did at 2 am in the morning, but there was nothing she could do in any case, she felt so helpless, as she observed me in so much pain. I really don't know how I got through that night. I know I never slept. On returning home the excruciating pain continued. I asked my wife to call an ambulance...... To cut a long story short I was admitted to Hospital, three times in a matter of weeks, as an, 'in- patient', due to the unbearable pain and falls. Twice sent home after observations, without a diagnosis.

It was only on the third occasion after several misdiagnoses, the orthopaedic surgeon visiting my bed and said 'although the scan on my spine revealed some 'wear and tear', it couldn't be the reason for such pain in the front of my legs'. I asked if there was a neurologist in the hospital and if so could I see one, as I believed the pains had something to do with the nerves in my legs. (I had been reading my medical books) To my surprise the surgeon did not dismiss my request and immediately said to his PA who was doing the rounds with him. See if Dr B... is in the hospital and if so ask him if he would come and see this patient ASAP on ward X . By a stroke of luck, a neurologist was in the hospital and he came to my bed within twenty minutes! (How amazing was that in a NHS hospital, I thought someone must be looking after me, after all).

After a series of tests on my legs and reflexes and lots of questions, from Dr B.... the Neurologist, had diagnosed me with the very rare diabetic complication Amyotrophy but he said I will send you to see a specialist in Oxford, England for some further electrode tests on your leg muscles and nerves; which will confirm the diagnoses; sure enough he was right, I did have Amyotrophy, how fortunate was I to have been given the correct diagnosis by the right person with the knowledge of the condition who just by chance happened to be in the hospital when I needed him. And how fortunate was I to have had an orthopaedic surgeon who hadn't dismissed my request.

Without this I could of been misdiagnosed for months and continued with severe pain and weakness in my legs. Apparently less than 1% of all diabetics experience this complication. I also have other peripheral neuropathy problems in my lower legs, in the shin bone area, but not my feet or ankles. (Numbness, sharp pains and tingles).

The hospital pain management team prescribed the 'convulsion' drug Gabapentin x 300mg one 3 times a day. Plus Doulepin 25mg in the morning and 75mg at night and 1 Tamazapan 10mg at night plus Co-proxomal as required, plus 40mg Statins at night and one Rampril (blood pressure tab.) 1.25mg in the morning. Three days after starting the Gabapentin and Dosulepin the severe pain in my thighs and knees was reduced by over 90%.

Unfortunately after taking these drugs for three months I have developed painful arthritic type pains and stiffness in both my shoulders and pain and tingles in my right hand and fingers. Is this a side effect of the drugs or is it part of my neuropathy nerve damage spreading to other parts of my body? I have lost over a stone in weight 22 LBS or 10 kg in the last 6 months, I have muscle wastage and weakness in both thighs but mostly my left thigh. I can walk about 200 metres with a 'roller' walking aid, and about 80 metres with a walking stick, but now I walk with a limp as I have to lock my left leg each stride to avoid falling. My left knee has given way on several occasions and I have fallen awkwardly but not recently ( the strength in our quad muscles affect the knees significantly), I have also started to regain some weight in the last few weeks. I am hopeful of a slow recovery.

A very good friend Dr E.... (a friend for more than twenty five years) who is a very experienced and very well qualified GP, told me he had only come across one new case of Amyotrophy in over 35 years as a Doctor. He has given me good reasons to be optimistic, by saying, 'if I change my lifestyle and stop smoking especially, there is every chance that the damage nerves will repair themselves, very slowly. It could take more than a year'. Well that is something to hope for and gives me reasons to be optimistic about the future, after all I'm only 53 and there is much I would still like to do yet.

With faith, determination, the right treatment and physiotherapy support and healthy changes in lifestyle there is no reason in time why I won't achieve my goals to one day be able to walk properly again and get about like I used to do..

I hope my story helps medical professional and diabetic sufferers to be more aware of this very rare complication of diabetes, so that others do not have to go through the severe pain that I had to endure for over three months before a correct diagnosis and correct pain treatment was given. I am so grateful to the Neurologist for his quick and correct diagnosis.

What is the prognosis for my condition? And are there any other diabetics with this very rare complication? If so I would love to hear their story.

There is so little information about this condition in the UK and no case studies on the Internet that I can find. I have also found that very few GPs are aware of the condition as are physiotherapists. One of the funniest things looking back now, was when a physiotherapist was trying to find a reflex reaction from my knees. After five minutes of hitting me harder and harder with his little hammer he finally gave up when I yelped in pain he hit my knees so hard, still without a reaction. It would be useful if you could publish my story to educate medical professionals, about the symptoms of Amyotrophy. I was very lucky to have a fairly early diagnosis just by chance really. There could be many other sufferers who have been misdiagnosed and therefore not receiving the correct pain relief and physiotherapy support.

Needless to say because of the seriousness of this condition I have made some major life style changes. My life style profile is as follows: Male, aged 53 non-smoker now, I gave up smoking just over 8 months ago, before that I smoked on average 15 cigarettes a day since I was 12 years old (with several years of not smoking years in between) The unbearable pain in my legs was enough to stop me smoking immediately; as I thought the smoking had contributed to the nerve damage in my legs. I will never smoke again. I also reduced by drinking substantially at the same time, from approx. 18 units a week to just 2 units or nothing now. (Alcohol just doesn't mix with the medication I'm on in any case) I have also started a course of hydrotherapy in a very warm swimming pool at my local hospital. I believe all of these changes will contribute to a slow recovery and re- growth of the damaged nerves.