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Is there anyone like me?
2020, I had trouble walking and went to the ED. They diagnosed me with Rhabdomyolysis. CK was in the 500’s(not Rhabdo). MRI showed encroachment in my lumbar spine. I had fusion surgery of S1-L3 and this did not help my weakness. Right calf atrophied and I learned to live with a cane. 2022, I had weakness in my left leg. All my EMGs show possible Radiculopathy and/or motor neuron disease. My CK is now always 300-500 and my troponin levels are also always elevated. 5 neurologists all have different, subjective, neurological assessments. I was a body builder and have always been strong. Now, I am in a power wheelchair and both calves are very atrophied. Two neurologists have seen UMN dysfunction but the EMGs do not match my physical disabilities. I found another patient, in a forum, presenting the same as me. Is there anyone else like this? Help.
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2 Replies
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My husband has had a similar course as yours. His began with weakness in his right knee. In December ‘21. Over several months he developed foot drop. X-rays and CAT scans showed lumbar compression and he had a laminectomy. Shortly after surgery he went to the ER due to rapid heart rate and difficulty breathing. His troponin was very elevated. He ended up with a heart cath but all was normal. Within 2 weeks of surgery he developed fasciculations of both upper extremities. The neurologists dismissed my concerns that he could have ALS (I’m an RN with many years working in neuroscience). They reluctantly agreed to order an EMG of his legs which showed motor neuron disfunction but would not call it ALS. I made an appointment with a neurologist at Rush hospital in Chicago. Mayo Clinic confirmed the diagnosis a month later.
My husband is now confined to a power wheelchair. His decline has been rapid in both muscle function and respiratory decline. This disease is relentless. I feel so helpless to slow it down
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Thank you Andrea for sharing. I am so sorry for your husband.
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