2 Co-Workers Diagonosed with CIDP
January 29, 2009 at 11:41 am
I just learned yesterday that a former co-worker was diagnosed with CIDP about 5 years ago (we had a very interesting conversation).
What are the odds of that happening??? :confused: I’d guess since this is an [B][U]extremely rare [/U][/B]disease the odds are probably [B][U]astronomical[/U][/B]. But not zero (I read the posting about the Swine Processing Plant cases).
My ex-coworker and I worked side by side in the chemicals section of a Refinery (no pigs there).
Does anyone track history and information on CIDP cases (like the foundation or CDC)? I’m going to relay this info to my Neurologist during my next visit on 2/13.
Who else would be interested or should be informed?
January 29, 2009 at 5:08 pm
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
AnonymousJanuary 29, 2009 at 6:11 pm
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.
January 29, 2009 at 7:11 pm
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.
AnonymousJanuary 29, 2009 at 7:36 pm
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.
AnonymousJanuary 29, 2009 at 9:41 pm
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.
AnonymousJanuary 30, 2009 at 5:37 am
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” 😮 😮
January 30, 2009 at 3:50 pm
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
AnonymousJanuary 31, 2009 at 8:20 pm
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
AnonymousFebruary 1, 2009 at 8:20 pm
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.
February 3, 2009 at 8:08 am
Fred and Dawn, I looked for Dr. Koski at the University of Maryland and didn’t find her listed. I just saw on the website [url]www.cidpinfo.com[/url] that she has retired from the university.
I have an appointment with my Neurologist the 13th of February. I am going to relay this information to him and gage his interest. If he doesn’t seem interested I will contact the CDC or try to contact Dr. Koski to see if she knows of someone who might be collecting data on CIDP demographics.
Thanks for all the responses.
February 3, 2009 at 9:09 am
E-mail her via the foundation, she still is on their board of medical advisors.
AnonymousFebruary 3, 2009 at 2:36 pm
😮 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
AnonymousFebruary 4, 2009 at 6:59 am
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.
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