Mr Tony Arnold
The first time that I realised something was wrong was when I heard a colleague fall off of his heavy goods wagon whilst loading it. I shouted for help but no-one heard me. It was then that I tried to run for help (after checking that the casualty was safe) I could not run because my legs felt that they were wrapped in treacle. I found help but again I couldn't run back to the casualty. This was my first feeling of a total lack of energy. But it was four years before I was diagnosed with MG. Now I am wheelchair bound due to this rare and misunderstood condition. It's been 7 years now since the above mentioned and no improvement since. I have now had a replacement shoulder, left and right hip replacements due to me falling because of MG.
Thank you for your response and question. I am on 60 mg pyridostigmine bromide every other day. I have asked my consultant if physio would help me.....his response was what's the point!
Regarding my legs, at night is the worse point of day for me, they ache and restless leg syndrome kicks in. My hands suffer from Raynaud's phenomenon and they cramp up my fingers at any time of day hot or cold environments.
Leg cramping does not improve significantly with MG treatments for most patients. However, falling is no doubt a major concern. Is pyridostigmine bromide the only MG treatment you have ever been on? Has your doctor ever brought up adding an additional treatment?
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Remember that even if your doctor does not agree with you on some subjects, such as physical therapy, you are the ultimate decision-maker! https://myasthenia-gravis.com/living/educating-yourself I think physical therapy could definitely benefit you, especially when using a wheelchair. Here is an article with other approaches you may be interested in: https://myasthenia-gravis.com/clinical/holistic-therapies-for-pain.
Jodi, Team Member
I’m really sorry to hear about the struggles you’ve faced over the years. It must have been incredibly frightening to experience that initial incident and feel so helpless. You mention no improvement in 7 years. Have you tried MG treatments? If so, which has not worked for you? How have your leg pain and hand cramping been? Jodi, Team Member
