After 2 years of thinking I crazy OHSU just diagnosed me with pnh and cramp fasciculation. My legs have felt like something crawling under the skin for a while and cramp when I try to play soccer or do anything else strenuous. I have learned to not move to fast and I listen to my body a lot before playing soccer or even going for a walk. My question is that I have noticed I am getting really weak. My doctor is noticing it up in my arms now, especially my right arm and hand. I have a hard time twisting open things and now I am starting to shake. Also my neck, jaw and back hurt all the time and I notice my head will even start shaking at times like my neck is too tired to hold my head up. Does anyone else get any of these issues? I have not been tested for MS or ALS (except normal MRI's and CT scans). I am not even 40 yet. I take vitamins everyday and I eat well. I don't eat any dairy and have been cutting out gluten, nuts,eggs alcohol and caffeine. I have 3 young children, a new marriage and I would love to have one more baby, but now my whole life is on hold. Knowing this may be the beginning of worse things to come makes me start to panic about my future as a wife and mother. Please let me know what symptoms you all have and if they come and go. Also if you think I need to pursue what might be causing these other issues. Thank you.
Cramp fasciculation syndrome does not present with weakness. However, Myasthenia gravis, like PNH, is an autoimmune channelopathy and could explain weakness. It's important to differentiate between perceived weakness and actual weakness. Given your symptoms, you should see a skilled neurologist for a complete workup and electromyogram (EMG and nerve velocity testing.
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