Neuro says I have CIDP variant. Do I?

[mousa]

Please let me know what you think. Do I or don't I have CIDP variant?

I am female and 64 years old. Have always been very active.

June 2003 had electric shocklike pain down both arms. Didn't go away so had MRI cervical spine which showed arthritis. Saw neurosurgeon who said my neck better than his and sent me to neurologist who Dx CIDP variant and prescribed methotrexate. The "zings" by this time were in head, arms, and trunk and quite bad at times. BUT zings happen when I lie down to go to sleep. Zings used to happen very soon after lying down, now happen 20 to 30 minutes after lying down. Rarely have woken me up. Never have them when I awaken morning time. Very, very ocassionally had them when tired and sitting.

I have no tingling, pins & needles, numbness, weakness, neck pain, headaches, ataxia, no swallowing problem, no bowel or bladder problem, no aphasia, and manipulation is OK. Reflexes are normal.

I do have sleepiness +++ ocassionally, do have ptosis on right side when I am very tired, do have some atrophy (more on right side than left, hands, feet, buttocks) and neuro says I have winging of scapulae. Do have noise in right ear but have had 3 ops on that ear for perforated ear drum. (Mastoiditis age 5 and white water rafting many years later)

Have palpitations (neuro says many of her CIDP patients have palps) that are really bothersome but can then go away for months. ECG shows depressed ST but cardiologist can't find reason. Was on LIPITOR 5mgs daily, on and off. I say on and off because I think it gave me very sore feet, so would not take until feet were OK again. CT64 in December 05 showed all bloodvessels absolutely clear so haven't taken Lipitor since. And Cholesterols done recently at another hospital showed a drop of 100, from 250 to 146. Only change in diet was to stop eating chicken! Now on veg and fish.

Presently am continuing with Methotrexate 7.5 mgs on Mondays, and neuro, at recent consultation, prescribed the anti-depressant Nortrilen 10mgs taken in evening to lessen intensity of zings, but it wipes me out and makes me depressed!! Also, am now having tingling/itching of scalp. Does Nortilen cause that? Also take Lorazepam (Ativan) 1mg to sleep. Neuro says I do not have MS because spinal column would be another shape. Really??? Neuro says that white 'streaking' on spinal cord is inflammation. Neuro says I should think about having IVIG.

Right at the beginning of all this I felt I had a mechanical problem - that when I lie down (doesn't matter what position) I get zings. No problem when I walk and stand. Also felt that Sleep Lab would have been useful for diagnosis but doctors poo-pooed. Of course, I have asked the neuro why I only get zings when I lie down and relax. She says that it could be from sensation of pillow. I said that then if I strapped my pillow to my head when walking and standing I would get zings? She said no, because pressure would not be there!

Have recently started taking CoQ10 58mgs daily, Royal Jelly 1 daily, Evening Primrose 1000mgs daily, Omega 3 1000mgs daily, Vit C 1000mgs daily, and am continuing with B-complex. Also take Calcium Citrate for osteopenia.

I am interested to see how I progress the further away I get from Lipitor.

Will be most interested to hear what other CIDPers think. Any other tests I should do?

Many thanks for reading this. Best wishes to you all.

[sos_group_owner]

Hi Mousa,

Have you considered going to a chiropractor?
My right hand gets numb when I lay down.
I've had this problem before and when I have
a few chiropractic adjustments, the numbness
goes away.
When the spine is out of alignment (subluxation)
you can experience numbness or sharp pains.
More info:
ww.echiropractic.net/what_is_a_subluxation.htm

The link below is to a CIDP support website. It
might help to answer some of your questions:
ww.cidpusa.org/diagnosis.html

And info about IVIg:
ww.cidpusa.org/P/ivig.htm

Fran

[mousa]

Dear Fran,

Many thanks for your reply. I have used chiropractors in the past but, so far, here in Thailand haven't found one. For the past 9 days or so have been having a bad time with "zings" when I lie down and terrible daytime sleepiness. I don't feel I need to nap - I am just sooooo sleepy! Am beginning to think my neuro is right and I do have CIDP. Yuck!!