My neuro started me on the pulse steroids last month. 200mg two days in a row once a month. This month he will increase it to 250mg for 2 days. I can tell you I feel so much better as far as the fatigue is concerned, but my pain is a lot worse. My hands are really painful. I take Lyrica 100mg morning, 50mg noon and 150mg night. I can sure tell when it is time to take it because of the increase in pain.
I had an episode last week that was scary. Pain started in my upper spine, real sharp pain, then it spread around my left side around my ribs and up my neck. It felt like tendonitis. I could not turn my head. I took Naproxin for a couple of days and it went away. This was new to me.
My feet are so numb that a couple of months ago, I broke my little toe and did not know it until it turned black.
It sounds silly to say I am in more pain and feeling better:o but not having the horrible fatigue and weakness is almost a good trade off.
Hope to get to know you all as I am new to CIDP and my doctor is verbally saying it but has not given me the official diagnosis. He said if the steroids help me it is an indication of an autoimmune disease and will help document the need to treat me for CIDP. I went to Shands at USF in Gainesville, FL. and the guru doctor there said it was in my spinal cord. Transverse Mylenitis. My neuro did a LP and a contrast MRI and found nothing. He says the paroneal nerves are being affected now. (my butt is numb:eek: )
My illness came on very suddenly in 2005 and I was close to bedfast for 6 months. I am on a walker now but I have been back to work for almost 3 years now. I have a desk job but there have been days that I hardly remember being here.
I have been reading the forum for several months now and have just started to post. I physically relate to so much that is said here.
I have struggled at being my own advocate as most doctors do not know how to treat CIDP. When my neuro said idiopathic neuropathy, I said “not good enough, keep looking.” It would have been easy for him blow me off but I refused to let him.
Enough from me I must get back to work.
Have a peaceful day.