Where Are You From & Where Do You Live Now?
AnonymousFebruary 6, 2011 at 10:00 am
[FONT=”Microsoft Sans Serif”]I wonder if together, we can find certain hotspots for cidp/gbs… since most of our member are either from the US or canada, i think it could be fascinating to try to ascertain if there are more cases in certain areas and if so, what industries or other environmental factors may be present.
won’t you help out and post both where you grew up and if different and significant, where you live now– i am hoping to create a statistical map of north america with the numbers represented to show where the majority of cases exist…
AnonymousFebruary 6, 2011 at 11:34 am
Grew up in Southern California, oops, then we moved to Alaska.
Industrial (environmental) factors include ionizing nuclear radiation; organic vapor chemical exposure [such as gasoline, tetrahydrofuran, methyl ethel ketone (2-butanone) and others]; home chemical and garden sprayed pesticides.
Other environmental factors include multiple comprehensive immunizations required for military service and foreign travel.
First symptoms appeared more than 30 years ago in Southern California following several years on the East coast.
AnonymousFebruary 6, 2011 at 12:16 pm
I would like to help.. I also think it would be interesting if we could add the age of GBS/ CIDPers when they got sick & where they were living..
I grew up in Dover Ohio till I was 19 in 1987. Then I moved to Uhrichsville in 1987 till 2005. Then I moved back to Dover Ohio & got sick in 2006 at the age of 38. Then I was gone for 1 year in hospitals & rehab center & a nursing home. after I came back home went to my home in Dover & in then in 2010 at the age of 41 I moved to New Philadelphia Oh & plan to stay in my home till I’m gone.
I had a severe case & almost died 2 times & my neuro thought I would never get out of bed , but I walk with arm cuff crutches & he told me in Nov 2010 that I am in the 20 o/o area that is going to be disabled & I am as good as I’m gonna get.
I fell on Halloween 2006 then I was sick with flu for 1 day on Nov 5th. & then I just could no longer walk.
They believe that mine was autoimmune because 5-6 weeks before I got sick my immune system went wacky.
I have the help of home health aides because I am disabled & their are things I can no longer do myself.
AnonymousFebruary 6, 2011 at 3:25 pm
[FONT=”Microsoft Sans Serif”]mine is complicated as i grew up as a military brat– moved all over:
-long island, new york
& various other places in florida–university years (1975-1991)
-san francisco, ca (1991-present)[/B][/I]
i got a case of shingles prior to my cidp onset– and had been quite stressed.[/FONT]
AnonymousFebruary 6, 2011 at 8:23 pm
In one of the most environmentally conscious areas of the state! Loong before it’s time.
Then western Virginia, on one of the only two ‘unpolluted rivers’ in that state at that time..long ago also.
Then DC and it’s environs [meaning suburbs].
Where I live now, there are random ‘spots’ of radon but, not nearby.
Only new quirks in the area are West Nile [tested neg] and Lymes’ [again neg]. But we all know how reliable those tests are! I find it ironic that I don’t have a positive titre for Lymes’, as this area is rich with those ticks!
Hope this helps others? This stuff will get you whether or not you are ready for it!
Hope for one and all! May we find some random ‘pattern’ to this!
AnonymousFebruary 6, 2011 at 8:24 pm
I grew up on Long Island in New York, transferred to St. Pete, Florida in 1989, back to family in New York when onset of CIDP (56 years old) was causing me to lose my ability to walk, that was in 1998, last place I worked was in nuclear medicine in a hospital, moved to central Florida in 2008 where I am now (69 years old). I’ve always gotten sick when I went through changes with drinking water and one of my IV nurses thought this might be a cause.
AnonymousFebruary 6, 2011 at 10:23 pm
Born & raised in Hilltown, PA (NE of Philly) Limerick PA not too far away had a nuclear plant and TMI a bit farther away. Lived in Allentown PA for 13+ years and now in Central West Florida for 15 years. I am 55 yrs old, just diagnosed with CIDP 3 months ago. Nothing happened flu or shot wise to me, never had a flu shot in my life. I’ve experienced vision issues over the years since I had lasix surgery in 2000 and hypothyroidism for about 2 years. I also found out thru being dx that I was Vit B12 deficient. It seems these symptoms/issues are common with a lot of us on here!
AnonymousFebruary 6, 2011 at 11:25 pm
I lived in Michigan for the first 34 years of my life, then moved to Idaho. After living here for ten years, I had a severe case of food poisoning and almost died. My symptoms started about 3 to 6 months after that. I have had CIDP for 5 years and Dx with RA for 6 months.
February 7, 2011 at 12:08 am
February 7, 2011 at 12:13 am
It’s possible that genetics could play a role along with environmental factors.
AnonymousFebruary 7, 2011 at 1:47 am
I have lived in Northeast Michigan for my entire life. I have vacationed in Cape Coral Florida several times. One thing that I have often been concerned about: I took care of my brother-in-law when he was very ill after he returned from the Gulf War. He died. I developed symptoms following this. I was diagnosed with CIDP nearly two years ago. I will be 53 this month.
February 7, 2011 at 10:33 am
I have lived in a small town 45 min. north of Toronto for the last eight years. I’m surrounded by farm land but there is a small plastics company in town about a km from my house. Prior to that, I lived in downtown Toronto for 15 yrs (lotsa polluted air like any other busy city) and the burbs mostly before that.
I’m definitely not a health-freak, but eat with a conscience and generally try to eat healthy. Moderate drinker now but I used to party a LOT.
I was EXTREMELY (for me) busy when GBS struck as I was putting together a charity rock concert in the community where I teach. This is what I would consider ‘fun-stress’ however in that I love doing that stuff, I just had a lot of it to do.
I had the H1N1 flu-shot about 4 months prior to GBS onset. In the summer of 2009 I developed a lung infection that stuck around for 4 months. Many rounds of anti-biotics.
I will be 42 in May.
Best to you! Say hi to Sophie and Judy
AnonymousFebruary 7, 2011 at 4:27 pm
I have lived in Chicago my whole life. The summer prior to my symptoms I developed a very bad gastro infection for 2 weeks. I think I caught a virus from the kiddie pool or a virus from one of my small children.
I had the seasonal flu shot in Sept 2010 and the H1N1 flu shot on November 15, 2010. On November 19, I started developing symptoms. I think it was the combo of all 3 things, but that the H1N1 shot triggered the autoimmune issues. I have had a history of migraines since my 20s with the visual aura, and I was born or developed prior to age 3 a bilateral hearing loss, but no other significant health problems. I am currently 39 (literally) and holding….;)
AnonymousFebruary 8, 2011 at 4:22 pm
Yonkers New York
North East New Jersey
San Bernardino Ca
Bien Hoar Lien Nam
Los Vegas NV
Oklahoma City OK
North West FL
North West FL
– Does not count the trips to various garden spots that lasted less than a year
Do I eat sensibly? – a well balance meal = cared in one hand
AnonymousFebruary 8, 2011 at 7:16 pm
I spent the first 12 years of my life in central New Jersey, then lived in the Washington DC area until I was 28, then moved to Connecticut where I lived until moving to Mexico in 2006. It was in Mexico that I became symptomatic, in the spring of 2008. I returned to CT in early 2009.
I believe my CIDP is related to one or more of the following:
A bite on my right foot– possibly from a scorpion — which led to numbness at the site of the bite which began to spread through my entire foot and then moved to my left foot and both legs.
Around the same time I had a weird virus, involving some nausea, excruciating bone pain and extreme fatigue. It lasted about 3 days.
Lots and lots of mosquito bites, including from aedes egyptus, the dengue-bearing mosquito. I never got dengue, but I wouldn’t be surprised to learn that my immune system was working overtime to prevent my actually contracting dengue. And we all know what happens when the immune system works overtime.
AnonymousFebruary 8, 2011 at 9:24 pm
Raised in Ohio
Visits & Vacationed in
Had undercooked fast food chicken, cold virus with lingering cough, had open heart surgery with lingering cough, got GBS 8 days later.
I had symptoms prior to surgery with low back pain, knees would buckle, hands and feet were tingling. Immune system was working overtime.
AnonymousFebruary 8, 2011 at 9:39 pm
Born and raised in Altoona, located in rural central Pennsylvania. Traveled much of the country as a college basketball player 25+ years ago. Lived in Concord, New Hampshire from 1984 to 1990. Lived in Pittsburgh, Pennsylvania from 1990 to 1993. Back in Altoona since 1993. Pittsburgh historically was very polluted, and I did develop seasonal allergies while living there in my 30’s. Diagnosed with CIDP in April of 2010.
AnonymousFebruary 12, 2011 at 3:47 am
great post. I hope that this helps. born and raised in Manitoba, Canada. Lived in saskatchewan,Canada. I worked as a crisis counsellor.(night shift) I was very active. I went through a very bad break-up a few months before my onset of gbs. It started with flu symptoms. fatigue, no energy. My children felt helpless. I went to ER for the docs. to tell me I had a chest infection from a cold.I progressed rapidly until almost dying and completely paralyzed with terrible muscle pain. I could no longer speak and then needed a respirator to breathe. I had hair loss, and I lost a great amount of weight. (I wasn’t very big to begin with) all in all, my suspicion….. to much stress……,
It’s been quite a journey…. I’m here,walking now, going to the gym. And trying to piece my life together. although the journey is not nearly over. I want to live, love and laugh.
take good care always.
AnonymousFebruary 13, 2011 at 5:02 pm
I was born in Dallas, TX. Raised in Duncanville, TX where I still live today. I am 34 years old.
I started to get sick in my early twenties….I developed severe asthma and allergies, heart probelms, stomach ulcers, constantly had pneumonia…
In December 2003 I was diagnosed with Common Variable Immune deficiency, and started IVIG. It was something I was born with, and what was causing all of my health problems.
July 2006 I developed a DVT in my left arm, and was diagnosed with Anti Phospholiphid Syndrome.
June 2008 I had a muscle and nerve biopsy of my calf done, and was diagnosed with Charcot Marie Toothe -an inherited type of neuropathy, and Chronic Inflammitory Demylinating Polyneuropathy.
My immunoligist said that after I was diagnosed with the immunne deficiency, I was a lot more likely to develop other autoimmune disorders. Like the APS and the CIDP.
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