My neurologist thinks I might have chronic inflammatory demyelinating polyneuropathy (CIDP), despite the fact that, apart from the occasional shooting pain, cramp, or twinge, I don't have any motor-control, spasm or electric-shock-like symptoms. What I do have is longstanding, progressive, bilateral - and now debilitating - muscle pain, stiffness and weakness that responds well to prednisolone.
The more prednisolone I take, the better I feel, and the more activity I can do. It transforms my quality of life, even though I've never tried more than 30mg/dy. I've been on and off it three times during the last four years, but am being denied any more treatment until I have a firm diagnosis. I'm now in bed or in a chair, all day, almost every day. The strength and energy I used to have is gone. Bizarrely, I can't raise my upper arms above the horizontal anymore, unless I lie flat so the weight is taken off my shoulders and upper back. I've been wanting to join this group for a while, but have had to wait until I had a 'good' day, with less exhaustion and brain fog.
I'm awaiting an appointment for nerve conduction tests, but I fear these investigations are going to draw a blank like all the others. I recently found out I have 0.12nmol/L of anti-AChR antibodies, but am told that's too low to be of any consequence.
I've lived with atopic dermatitis and multiple allergies all my life, which are controlled with local steroids, antihistamines and emollients. My mother had ankylosing spondylitis. Those facts, and my good response to prednisolone, convince me I have a autoimmune disease. Some days, I'm at my wits' end.
Anyone had a similar experience?
Edit: I forgot to say, I also have controlled asthma, and apparently my tendon reflexes have disappeared.
Undiagnosed nerve pain
Peripheral neuropathy
New to this group but not to pn
Sound familiar?