Tuesday, March 4, 2008

Vitamins and CIDP

Education...knowledge...power...

As with any illness, becoming educated about CIDP has given me power. Power to stand my ground when I disagree with a doctor. Power to fight with the insurance company. Power to demand quality health care from home health agencies. Power.

There are times though, even with the information I have about CIDP, when I don't have the knowledge and information I need. I need answers. No answers, no power. There are times when I have to realize no one knows the answer. CIDP is so rare, answers are sometimes scarce. I just have a hard time accepting that answer.

Today I'm struggling with a lack of knowledge. I have a medical question and I've heard contrary answers from seemingly qualified health professionals. My question is "Is it safe for CIDP patients to take daily multivitamins?" I understand there's a fine line for CIDP patients and vitamins. A fine line between helping and harming. On the other hand, how do I know where that line is? How can I be certain a multivitamin is strengthening the "right" part of my immune system and not the part that has gone haywire? Anyone have the answer?

For the past two weeks, I've been taking a multivitamin and a calcium supplement. I plan to continue taking both until I'm told otherwise and I'd love to hear what you think. Until then, a wonderful resource of knowledge I've found is www.gbs-cidp.org

6 comments:

Don said...

I've had CIDP for almost as many years and I don't recall any prohibition regarding vitamins. I take a multi-vitamin, B complex, extra vitamin C and Omega fish oil for my heart. Never had any comments from my neurologist about this (he specializes in Neuropathy). If anything, all I've read is that vitamin B12 should be increased if your body isn't assimilating it properly.

Anonymous said...

I agree 100% with you.
I have been told vitamins are not necesary if I eat well. But with cido there are thinks I can not eat, as I have paresthesias in my rib and gas I can not feel is going by.

Anonymous said...

Me again.
What I think (as an enginner who works on proofs, not in theoretical o phylosofical thinking..) that is that if vitamins never worked to improve my inmune system when for years I had one hundred colds and flue, in bed for weeks, why it would work now? Should do not do anything to it to take vitamins, omega 3, lecithin and calcium.
And for sure it will improve my axons damaged by the anti-GD1a autoantibody I have at high rates.
I think is the same it happens with the old theory od bed and keep quit for spinal or arthritis, that now is the other way; no bed, exercice, lot of physio.
Sorry for my english, spanish my mother language.

Anonymous said...

My father was diagnosed with CIDP over 8 years ago, but was told to take only multivitamins, never vitamins by themselves...specially B12, as by itself it could damage his nerves further.

He does take Omega 9, a B Complex, which he has suspended and will replace with a multivitamin complex and Vitamin C.

Have you guys had any suggestions regarding your diet and exercise?? Also, have you tried prednisone??

Kristen said...

Dear Anonymous,
I've never heard that about B12, but I haven't taken it in years. I tried it briefly but felt no changes. I don't take any vitamins right now, but I'm sure a multivitamin would be good for me. As far as diet, I've never been told one way or the other, only to avoid excess of anything. My only exercise is walking at this point because anything else is just too much and I need to be able to get through my day. I took prednisone very early in my diagnosis and there are many who continue that treatment. If you have time, check out this website for TONS of great information.
www.gbs-cidp.com
I'm glad you stopped by and I'd love to hear more about how your father is doing. Keep me posted!
With hope,
Kristen

Kristen said...

I'm sorry, it's actually
www.gbs-cidp.org not.com. Sorry!