private msg left for IreneM

Hi Irene - I left you a pm with my email address. Please keep in touch.

Off to the Nuffield today to see a Professor of Neurology, almost our last hope in getting a dx of my hubby’s walking difficulty, after having seen a vascular surgeon, a cardiologist, a private neuro-surgeon. a useless Neurologist (NHS) a neurophysicist, and a chiropractor - they can only tell us that the signal from the brain to his legs is not working, and a neurological problem. I think it is CIDP - Chronic Inflammatory Demyelinating Polyneuropathy - a rare auto-immune disease that affects the myelin sheath of nerves to the muscles, and we are so optimistic that this may be the cause. Simple to fix with steroids and methotrexate. This Prof is an expert on MS and has done many published studies on the use of cannabis to relieve symptoms of Multiple Sclerosis, which CIDP is allied with. If he can’t help, we now have the name of a Neurologist in Bath who dx the author Polly Devlin’s husband with CIDP, after 12 yrs without a diagnosis, so that is a possibility. Can’t believe I first heard of this disease on reading an article about Polly Devlin in Vogue magazine. I wrote to her and her husband and they have both replied separately as they understand how limited our life is with my husband only able to walk about 50 yds. Hope springs eternal - well at least today it does!
Love,
Liz.