Old 04-18-2007, 08:38 PM #16 (permalink)
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Default thanks

Whitney / Shannonme

Thanks! This is already getting interesting! We will find out how diverse or simliar we all are. I appreciate your participation.

I think, once i get, about 6 - 10 or so responses, i'll start to formulate some type of database or spreadsheet, then, it can almost be like a fill in form or so, and can make it a little more easily filled in / short and simple. This great...you guys have to excuse me, i'm a analysist guru.....



Thx,

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Old 04-20-2007, 10:05 PM #17 (permalink)
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Default Hi Jamie

Hi Jamie, Sometime ago there was talk about doing this but, it never happened . There is the one thread but not enough info. I will get the extra info from my daughter so I can do this properly. We thought about also what type of work , environment where you live we live a mile from a Power Plant. Any Traumas etc. Good idea.! Get back to you soon. Beebe
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Old 04-21-2007, 10:17 AM #18 (permalink)
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Thumbs up fill in form

Jamie, I am interested in participating but will wait for the fill in form. That is a good idea and could possibly boost participation. I will be looking for your new thread.....
Toni
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Old 04-21-2007, 10:23 AM #19 (permalink)
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Default info for jamie

i agree with al that it would take lots and lots of typing from all of us, but i can ans. a few. it took my husband months of tests, several diff. drs, and lots of frustrations to finally be diag. with als. also, one neurologist, the one that operated on him for a misdiagnosed spinal stenosis, laughed at us when we questioned his misdiagnosis, and senseless surgery, said if he had als, he would walk like ...... and at this point he walked across the room like frankenstein, to show us what als would look like.

if you'll find my name and go back and read some of my postings, i think you'll find lots of info for your data.

jackiemax
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Old 04-21-2007, 10:47 AM #20 (permalink)
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Jackiemax - I had a weirdo neuro like that once! And Beebe - the environment thought is very interesting. I live in a small neighborhood with many retired age folks. I have lived here for 16 years, but right away I started noticing - my next door neighbor went for a checkup, found out he had cancer and died within 6 months, my neighbor across the street had cancer, 2 women next door from him had cancer, the man at the end of the street died from cancer. The problem is only a couple of them were the same kind of cancer, so the health dept. (my mom called) said it was impossible for them to be linked. At the end of our street there is a "power box". Interesting huh?!
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Old 04-21-2007, 02:09 PM #21 (permalink)
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Being new, I find this idea so helpful, totally interesting and important. I will also wait for a form. I would think that it would make it so much easier to untangle.
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Old 04-21-2007, 02:42 PM #22 (permalink)
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hey ltr i had the same symtoms as you but mine have been for the last 5 years heart rate and bp would go up all thopse things that you mentioned.
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Old 04-21-2007, 04:19 PM #23 (permalink)
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I'm really new to this forum but would like to participate in this survey. I'll have to try and reconstruct my husband's earliest symptoms from 2002, but hopefully they will help in diagnostics.

I was wondering if anyone here had been exposed to organophosphates, prior to developing symptoms? My husband worked with commercial pesticides and fungicides. His neurologist tested him for exposure and the tests were positive. I'm still convinced, regardless of the other medical opinions we received, that his disease onset was precipitated by chronic, low dose, exposure to Dursban (chlorpyrifos).

John passed away in September of 2005 and I miss him and his great sense of humor, dignity and strength of character. My prayer is that we can find the answer to this horrible disease and eradicate it forever.

I wish I had known about this site, while John was ill. He would have enjoyed sharing information and talking with you all.

Thanks for being here,
Susan
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Old 04-21-2007, 05:06 PM #24 (permalink)
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Susan - I am so sorry for the loss of your husband and all the two of you went through. I have to agree 100% with you that your husband's symptoms were caused by organophosphates. A little paranoia here, but I think our gov. likes to cover up this stuff. I know, everybody, it sounds weird, but think about it, it could be true.
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Old 04-21-2007, 05:23 PM #25 (permalink)
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I am sure my symptoms all started after a tetnus shot. pat
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Old 04-21-2007, 05:51 PM #26 (permalink)
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Zac - keep me informed of what you find out and I will do the same! Leslie
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Old 04-21-2007, 06:28 PM #27 (permalink)
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Hi Susan:

I am almost positive my husband's A.L.S. had to do with him being a duster pilot, applying ORGANOPHOSPATES (Pesticides), Herbicides, for 23 yrs.
He quit in 2000 and started a Commercial Flying School (He also had the Commercial Pilot's License), in 2005 he started with A.L.S. symptoms.

Paty
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P.S. I ALREADY ANSWERED THE PESTICIDES THREAD ABOUT MY FEELINGS ON ORGANOPHOSPATES.
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Old 04-21-2007, 11:24 PM #28 (permalink)
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Hi again all - speaking of the government........I have a good friend whose husband was in Viet Nam and suffered an exposure to Agent Orange. He now has MS and, after ten years of fighting governmental refusal to accept responsibility - they finally agreed and he is able to receive all his care from the VA.

In John's case, I found that the government makes it impossible for anyone to sue Dow Chemical company, because of toxin exposure and resulting illness. Isn't that strange?

We were unable to even receive any worker's compensation benefits for John, because the insurance carrier fought us and insisted that ALS is a naturally occurring disease process and there was no actual proof that he developed it from organophosphate exposure at work.

Thank you so much for your kindness. I miss him like crazy and will never give up my fight to try and prove some connection between toxin exposure and development of neuromuscular disease. It's the only way I can feel as though I may be able to make some kind of difference and his loss will not be simply an "occurrence" on somebody's statistical analysis sheet.

hugs to you all,
Susan
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Old 04-21-2007, 11:46 PM #29 (permalink)
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This answer would be so much better coming from John, as my memory is a little foggy about what his complaints were back in 2002. But, here goes.....

1) Symptomps prior to Dx

I believe his first symptom was weakness in his right thumb and a lessening of his grip strength in his right hand. Slight slurring of his speech was what caused me to insist that he see a doctor. This was about two months after he was having problems with his thumb. I believe he also had some leg cramping, but I'm not sure about this.....

2) Were you mis-diag or was is suspected ALS from start

His PCP referred him to neurologists who dealt primarily with stroke patients. They did diagnostic testing and, although did not directly diagnose ALS - that was what they thought it might be. They referred him on to the neurologist who diagnosed him with organophosphate poisoning and the ensuing neurological involvement.....

3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als

John's neurologist did not feel that what he had was actually ALS, but was very similar in symptoms. He honestly did not believe that John's neurological problems were ALS and never did feel this. He still feels that John died because he received no real treatment and simply got palliative care.

4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed

Not sure of the actual number.....quite a few though.....

5) What people around you (friends / family / co workers) would tell you when you started having problems...i.e. did they think you were crazy...etc.

Everyone was supportive. Probably because he had a presumptive diagnosis from the very beginning.....

6) How did it affect your home life / marriage.

Can't say how it affected his views of our marriage. I was in some kind of state of shock and absolute terror, after the first diagnosis. Still have some leftover mental numbness, even after all these years. Think I became over protective and hovered too much - which he absolutely hated. Sometimes I would go sit on the floor at night and just watch him sleep and listen to him snore. It gave me assurances that he was okay. In our case, it caused us to not take anything for granted. We were closer than ever before and I thought we always had a close marriage. I still feel as though I'm only half a person.....

7) What type do you have (Bulbar / LImb)
What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...

He had both. Don't ever remember him complaining of any pain at all, throughout the entire duration of his illness.

9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..

Maybe I can comment on this one, once I get to know you better. I'll have to rely on the comments of those who do, right now. Hmmmmmm - aren't we all just a little crazy?

10) Treatments, when started and how they have worked. Should relate the treatement to symptoms if possible and their relief or failure.

John never received any treatments, because we had no insurance at all. We had to fight every inch of the way and it just seemed that nobody, except me, cared about him.....this still breaks my heart.......
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Old 06-16-2007, 10:43 PM #30 (permalink)
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Default Anybody int. in keeping this going?

it would be a great tool, to even tually tag for the "is this ALS column", once there is a good history of people here. Newbies could read this.

Rgds,

Jamie
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