Hi all just to let you know i have now been to see a Neurologist. He told me there is no neurological cause to the weakness in my legs. He tried to tell me it is fibromyalgia and so did the Rheumatologist when i last saw her . However i do not believe this is ths case as i dont have any pain, i have slight soreness but no pain. Basically i dont think they know what the problem is and therefore they give you a label for the sake of it. i was originlaly told i had lupus and inflammatory myositis. They then changed this to you have lupus serology but not lupus itself, and viral myositis ? They said couldnt be another type of myositis becuase the inflammation responded too quickly to the steroid treatment. My ck was originally 30,000. I have been on steroids since it began last August. I had severe pains in legs arms chest my right arm swelled upo from wrist to elbow. i even had pain in my throat and some in chest. These symptoms appeared very suddenly over the space of a week. The next week i started taking steroids 40mg. I had incredible fatigue and still suffer, my cognitive functions were affected I couldnt concentrate i couldnt focus and couldnt fill out basic forms. i had a pressure that sat on top of my head for months. Inflammation on the brain was ruled out by an mri scan. However the last time i had that was April. The other problem i had was with my legs they did not want to hold me up. My balance was very poor. I walked around like i was drunk. i would have to hold on to pram for support and furniture to stop myself falling.
Problem with my legs improved between Dec and April. But when steroids came down to 5mg developed problems with legs again. i dont have th egiddiness anymore but i get very weak and all the strength goes out of my legs an di feel asthough i am going to collapse. Any level exertion seems to trigger it. Lack of sleep makes it worse and stress does not help either. i have had scans and blood tests but no muscle biopsy. My bloods are normal now and have been for a while.
I have not been the same since this all started i just want my life back. i feel i have a very poor quality of life at teh moment. Could it be the virus damaged my muscles and and thecweakness comes from that. I would like a second opinion cna anyone suggest anything or have any thoughts about all this i would be grateful. Thanks
Seema