Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
I think it depends on what is causing the muscle weakness.Has anyone with severe leg weakness and pain tried immuno globulin? I have read SCIG has less side effects? What dose did you try? Long lasting response?
I think it depends on what is causing the muscle weakness.
Something like myasthenia gravis, an autoimmune disease, might be positively affected by IVIG. But I think you would need to have an idea of the underlying cause to know if IVIG might be useful.
I do subQ replacement weekly. I find it vastly easier and with fewer side effects than traditional IVIG. But there are always exceptions.
My initial viral illness caused severe muscle pain and weakness (predominantly lower extremity proximal muscles). I did not have rhabdomyolysis. Autoimmune testing, EMG, and muscle biopsy all normal. Currently, presumed diagnosis is viral myopathy. My Coxsackie subtype 4 was elevated and my stomach biopsy +3 positive for VP1 enteroviral protein. I use to run, bike, kayak, rip stick and golf before my illness. Now I can barely walk around the block with my dog. Any activity leads to severe burning aching sensation especially at night. I also have random muscle fasciculations all night long.
As with most CFS sufferers, I have PEM, sleep disturbance, and periodic brain fog. Luckily, my autonomic dysfunction got better after 8-10 months.
Do you mind if I ask who ordered the stomach biopsy? Was that through a gastro doc or another kind?