I saw my new Consultant for my 2nd appointment today (Myopathy), until now I have had no Consultant for 18 years as told no one specialised back then, so left in limbo. When I first saw her she had a Neurologist with her who seemed very interested in my symptom. Long story short I am now being referred to a Neurologist for tests for CMT along with a referral to Human Genetics for DNA testing, plus Dermatology for a Skin Biopsy in regard to the myopathy as she feels I have been labelled with wrong myopathy. She says some myopathies are also connected to neuropathies, and last but not least the Pain Clinic for chronic pain. I was quite emotional realising someone does care about my condition/s. It will take a lot of appointments and a good few months but feel progress is being made how.
Also, while I am on do any of you suffer from problems with bladder and bowel, I have had long term bowel problems and more so with age (66 years). Could the neuropathy effect the bladder and bowels? I see a person on here mentioned his/her diaphragm - when I had pneumonia last year I could not cough properly at all and was given steroids to get back on track. However, I feel the both the myopathy and the neuropathy added to the problem.
My symptoms have definitely become worse in the last few years with foot & toe pain, ankle pain, tripping at the slightest incline in surfaces or rough surfaces along with less grip and strength. My wrists and forearms are noticeably thinner. I have lots of small bumps under my skin which I believe could be onion bulb deformity of nerves, but that is to be investigated.
I notice my tongue is not as flexible as it was and my speech can be pretty weird on my bad days with an inability to get the words out. Does anyone have these symptoms?
Any info would be informative to me at this time, thanks in advance. X
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