2 Co-Workers Diagonosed with CIDP

Hi Gary,
Yes, they do trac the info. I forget the Drs. name, but it is a female and she is on the board of the foundation. Look at the pictures, she has shorter hair and glasses. I believe it was her that discussed these statistics at the symposium.
About the statistics, I always tell everyone that they have Kevie to thank, because the law of averages would say cidp in our family again would be near statistically impossible.

When we were first dx, some of the tests done were for heavy metas and other chemicals?!
Dawn Kevies mom

I find it really interesting Gary. Just in a small 1 mile radius I know of 5 gbs cases. I know there are more in the wider area, but I thought 1 mile was a rather small area to have that many cases. My Dad’s boss died from complications of gbs.
I’m sure the cdc would find your info interesting. Who knows it may help in someway.

Gary,

I think Dawn is refering to Dr Carol Koski at the University of Maryland medical facility.
Your comments about chemicals makes me wonder if one of the agents you may have been exposed to could have caused some neurological invasion. I know some of the paint and thinners I use on old car restoration have more warnings about central neverous system damage than you can read. I think this was one of the main reasons chloridane was taken off the market several years ago. Something to look into. Good luck in your search.
Fred

My eye Dr has 4 GBS patients and now me (CIDP). Tracking gives some detail (which is better than nothing), but more could be determined if there was funding for some “true” studies.

Hi Gary,

That does seem rather odd to have two co-workers with CIDP. Although I live near a fairly large city, I thought it odd to be in rehab with 4 other women with GBS and four of us were in our 20’s.

Dawn, when you mention that tests were done for heavy metals, I had the same tests. Granted, this was back in 1991 when I don’t think GBS was as well known, but I thought that was odd. I’d never worked around chemicals nor did I live near a nuclear power plant (not to my knowledge). However, I’d had extensive dental work the year I was diagnosed and I’ve always wondered if the injections or materials they used were the cause of my GBS.

Gary, so sorry to go off topic, but your post brought back a lot of memories.

Take care,

Tina

I have been in touch with a woman and her boss that got GBS and at that time they were just new patients and CIDP was not mentioned. I will keep an eye on this tread and keep in touch with them. I am not sure where they work together, but it is in the same office.

I often wonder about others in my area. I don’t know them but with many not being diagnosed and some with “simple” cases I can’t imagine how much greater the numbers are. Has anyone tried putting an ad in the paper to find others?? I have lived down-wind from a nuclear reactor for the past 20 years. There are lots of cancers in this area. . . The saying around here is “have you seen the Columbia River glow in the dark” 😮 😮

Yes Fred, that is her name. At the symposium, I think I remember seeing a map from the sampling THEY did and it seemed as though the majority of cases were in the Florida, Ohio areas. How relavant is the sample? They sent the questionare to everyone they had in the database I presume, but that does not mean all responded? But at least it is a start. I will look through the papers they handed out and see if the map was included. If so I will fax it to one of you genius’s so that you guys can put it up for others!!! Yes, one day I will tackle this computer problem I have.

About the metals, with Kevin being a child, I suspect lead would have been their concern, via toys or perhaps mercury from fish or vaccines. Heavy metals and chemicals DO cause neurological issues, but if Gary O’s friends as well as himself get ivig or pp and have relief, I would guess that would indicate chemicals or heavy metals would not be the cause.
Dawn Kevies mom

There is some research going on here in Colorado as there is suppoed to be an “epidemic” of ms in this area, as well as GBS apparently. I don’t know of any published results of studies but I know Colorado in recent years has seen a lot of neurological disorders. Jeff

Even when I was first diagnosed with GBS, in 1976, I was tested for heavy metals and questioned extensively about what chemicals I had come into contact with. I was also questioned about bug bites. Something triggers the autoimmune response of GBS and CIDP. With some people it is a virus or bacterial infection and for others it is an immunization. It is also widely believed that certain chemicals and metals can cause GBS and other autoimmune diseases. Someone should do a study of the people on this site. In this one place we have people from all walks of life, from different places and from different age and ethnic groups.

Gary,
E-mail her via the foundation, she still is on their board of medical advisors.
Dawn

😮 Hi Gary: I don’t think neuro diseases are that uncommon… I worked on a sheeter at a paper mill. My “crew” of 4 of us…. Out of the four, my operator came down with als and died.. My boss had a gbs attack, and I had gbs 10/07 and subsequent treatments for cidp.. Although, I think its a matter of splitting hairs in the naming of my disorder.. What does that say about statistically improbable?
P”S” …. It was Months after my gbs attack that I found out that my old boss had come down with it as well……deano

I had GBS in 1963. At the time, there were 14 of us in two hospitals in Winnipeg, Manitoba. Our ages ranged from 5 years to 71. That was all the information they seemed to have, or at least to give to us, about the situation. In our Rehab Hospital, one of the doctors did do extensive nerve conduction tests, using volunteers from the staff for his control group. I was actually given the paper they presented at the Canadian Medical Association meeting that year. Of course, understanding the terminology was a challenge to say the least. I have always regretted that nobody investigated to see if there were any common factors among us. Now my regret is that there are no studies apparently that look at what we have in common now. I would think it might be beneficial to see what the long term outcomes have been. for those of us who are still around, since we won’t be here and able to participate forever.

Maureen