Mrs D /Annie /Anyone-need research help!
 

Hi all,
Well, I have checked and read, but I need help getting some non-MG info.

My probable dx of CIDP is pending, but because of some things I think I've found out, I need to kick it in high gear.

Trying to figure out what triggered my MG to flare, and now my "mystery" problem that the new neuro feels is a polyneuropathy, I'm been checking everything I did differently prior to my flare (which followed directly on the heals of the aneurysm coil I had done 1/28/09). I woke after the coiling with a blind spot in my right eye that the surgeon thought was a type of stroke, but the ophalmalogist doesn't know WHAT it is - not a stroke or glaucoma or retinal problem though.

With the mention of the polyneuropathies I started checking them out. CIDP fits my symptoms, history, the eye thing, the muscle deterioration - EVERYTHING that is not my MG. So I checked on the coil with CIDP. I think I've found a link, but I'm not positive. The information seems to be that Platinum (that's what the coil is made of) is a toxic cause or aggravator of CIDP demyeliniation.

I have called to move my appointment with my neuro up, but I don't want to go in there all frantic and demanding if I'm taking this information wrong - know what I mean?

Thing is, I found some case studies on people with plantinum coilings done that got blind spots following the procedure. 2 of those people died within 3 months from respiratory failure - which advanced CIDP can cause.

I'm more than a little concerned because with this particular flare I have "switched over" to mainly the PN type symptoms, but they are going way faster than I've seen in the past.

My hands, feet and some other muscle groups are starting to deteriorate (my massage therapist pointed some of those out to me on Thursday).
They've done that in the past, but not until months of symptoms had passed.

I am also having a swallowing problem that I don't believe to be Myasthenic because I am having trouble with cold fluids - they just get stuck in my throat as tho' I have an air bubble blocking it.

I have an old test from 1997 that indicated demyelination, but they thought they'd find MS and never did. It was never followed up on. It was decided I had cervical cord compression then, although there were those of my docs that disagreed. I believe now they were right - it was CIDP.

Anyway, any help on the platinum connection you could find if you have the time I would really appreciate. I tried to print off one of the journal pages I found, but it wouldn't let me. I need some documentation to take with me, I think.

Thanks a bunch.:grouphug:

Hi Becky, I have answered you at the PN forum.

Becky, You're in good hands with Mrs. D on this one.

I really hope this is not what is going on with you. Can they replace the coil?

Metals and the body often don't mix well. Metals degrade, just like most other substances.

As for the cold liquids, both heat and cold make MG worse. So it may be the MG acting up.

Please ask the guys over on the PN forum about mega-methylcobalamin doses and it helping with CIDP. It's the kind of B12 that you put under your tongue and it gets absorbed right into the blood stream. I know it won't "cure" whatever is going on but it has been shown to help somewhat.

This neuro sounds good so I doubt she will poo-poo you and your concerns! This is scary stuff, to think that something in your body is causing polyneuropathy. You have every right to be a little freaked and to get help right away. Hang in there. I'm sure they can help you.

Annie