I've been reading this board for quite a while and finally made the decision to join. I'm a 64 year old woman. Two and a half years ago my knees were really painful so I went to see a physio for advice. She said I had lost the muscle on the inside of my knee and gave me some strengthening exercises which I did, to no avail. The knees settled but a couple of months later (Dec. 2008) my calf on the same leg started twitching. My leg "didn't feel right" - hard to explain. I waited a while then saw my GP who was worried and referred me urgently to a NHS Consultant Neurologist. He told me I was imagining the twitching, the muscle loss was probably due to a bad knee and dismissed me. HIs words in the letter were "well she does weigh 90kg and wears tight underwear". I am 5'10" and yes, overweight, but he was really insulting and my GP was quite angry on my behalf. He did, however, arrange an EMG and it was normal. I did lots of walking that year. The leg continued to twitch - along with the arms and buttock. Last year I was told I had fibromyalgia but the Rheumatologist was quite alarmed when he examined me because my buttock had wasted, and the back of my leg as well. I didn't know about this because I don't look at the back of my leg or my bottom if I can help it. He measured it and there was a 2" difference above the knee and all the way up. He made another neuro appointment which I went to last November. Doctor just looked, said I had brisk reflexes, a bit of muscle loss but nothing else and saw no reason to repeat EMG.
Fast forward to last week. After major twitching down one side and developing a numb foot (left leg as usual) I went to GP who was alarmed when he saw my leg. Referred me back to neurologist. I said "is it possible that I have got ALS or another form of MND". He said "wouldn't have thought so because of timescale". When I pointed out that some people took two or three years to diagnose he agreed it was possible and said "but I have to say that it does seem to be progressive". I have told him that my walking is affected and he was not suprised "given the degree of muscle loss on the leg
I would expect that". 26 August is neurology appointment and I don't know if it is the one who dismissed me so curtly but I am very worried now.
Having said all this I still can walk three miles but my thin left leg feels stiff, particulary when I start off. In fact, if my right leg felt like my left I would have trouble walking. Sorry this is so long but I've got no one to discuss this with - my friends just tell me to stay off the internet and there's nothing wrong with me, but you know your own body don't you?. I am just dreading the appointment yet can't wait because I need to know yet I'm scared.
Fast forward to last week. After major twitching down one side and developing a numb foot (left leg as usual) I went to GP who was alarmed when he saw my leg. Referred me back to neurologist. I said "is it possible that I have got ALS or another form of MND". He said "wouldn't have thought so because of timescale". When I pointed out that some people took two or three years to diagnose he agreed it was possible and said "but I have to say that it does seem to be progressive". I have told him that my walking is affected and he was not suprised "given the degree of muscle loss on the leg
I would expect that". 26 August is neurology appointment and I don't know if it is the one who dismissed me so curtly but I am very worried now.
Having said all this I still can walk three miles but my thin left leg feels stiff, particulary when I start off. In fact, if my right leg felt like my left I would have trouble walking. Sorry this is so long but I've got no one to discuss this with - my friends just tell me to stay off the internet and there's nothing wrong with me, but you know your own body don't you?. I am just dreading the appointment yet can't wait because I need to know yet I'm scared.