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.......