Charcot-Marie-Tooth UK
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Continuing muscle issues

Continuing muscle issues

Dear all,

Last time I've posted here was three months ago. I then asked you if my feet and symptoms sound like CMT.

I was (and am) very happy with all the kind and very useful responses, so thanks again!

Now here I am again after some tests were done:

- A nerve conduction study was done on my feet and lower legs. Results were normal. He told me I have probably neuropathic pain and should do revalidation.

- I've been to a third Neuro opinion in a teaching hospital just before Christmas. They did not do any other tests than a regular blood sample. Only my CRP was a bit raised (for me that is a huge raise as I'm always on the lowest part of the normal range) but they neglected that. They told me that they would consult my rheumy but after three months, some calls from me and my GP, they still did not plan a second appointment with me to discuss possibles medical causes for my muscle wasting and strange feet. Btw, they get skinnier and the toes curl up more now than 3 months ago.

- I asked a second opinion with another rheumy. He did a X-ray of my feet (normal) and blood tests (normal except the high ANA that is high since years even though I take immuno surpressives). He told me to go to revalidation for chronic pain. It is probably fibromyalgia that I have according to him. I asked him to have a MRI of my feet as the pain is killing me and also some toes are red and seem swollen. I got a part of the MRI (two feet with contrast were discussed, the MRI was made of both feet but only left forefoot with contrast), results follow next week. The lady that assisted in the MRI told me that she is no doctor but something not normal was appearing on the scans (alien feet probably hahaha).

- I've also been to the physiotherapist, once a week for massaging the painful feet. He tells me that muscles and tendons are spastic tightened all the time and causing me the pain.

- I have also visited my podotherapist a few times. He cannot alter the orthotic inlays anymore, he says they suit my feet perfectly.

I told you guys that I also feel weakening in my hand muscles and feel like my thumbs muscle also seem a bit flatter than they used to be.

About a week ago I noticed a valley of muscle wasting in my right hand. See attached picture. In my left hand it is not as visible but the muscle there is wasting too. My hands always feel very tired.

I am at my end wits if next week the rheumy tells me the MRI didn't show any irregular and I am considering as a fibromyalgia patient. Though fibromyalgia is a nasty thing too I cannot believe with these feet and this hand it is "only" fibromyalgia.

I would really appreciate some advice again.

Keep the spirits high dear people!

2 Replies

Hi, your hand looks like mine. I've also got a big dent at the side of my

Hand above my little finger where the muscles have wasted. I was diagnosed with CMT about 12 years ago. My fingers are quite bent now and I've had both knee joints replaced plus 2 operations on my left foot as it was turning inwards. I have dropped arches and can't walk without shoes now. I can't walk very far outside now and have poor balance. I've always had problems with my ankles and knees, always falling over and no good at running or PE at school. I was told it was a very slow disease but mine seems to have speeded up in the last 10 years since I developed foot drop and came to a sudden standstill. Fine one miniute, rushing my daughter to school and suddenly my legs went really weak and I found I couldn't lift my feet up. A few miniutes walk home took me nearly an hour. Have you had anything like that?

1 like

Hello. I have had CMT all my life but as I get older and slow down the more it speeds up ! so I think the more active you are the better. recently I have been painting walls with a pound shop roller especially re-adapted  handle so it works with my hands, and is not to heavy therefore. The secret is to keep moving don't give up ! every problem has a answer. I can't straiten my hands or walk far with out support. doing all things help.! I make a point to walk, wash up, exercise the points where it gets me.! I have a paralysed diaphragm so on night ventilation. good luck, chat again,



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