I need you help, to help us

[bbisweary]

I am wanting to write an article to try to get published about ACM.  I have a work contact that is a publisher of three family magazines  that I am going to ask to at leat look it over and edit, and maybe she will run it in her family magazine. Also, I have recently been in contact with an old school chum who lives in LA and is in with many rich and famous.  My guess is that he may know some magazine hiearchy. I want this article to raise awareness of the physical and emotional suffereing realted to this disorder, and the senselessness of a majority of the suffering.

What I am asking you all to do is write me back if you suffered without a diagnosis for > two years, if doctors first diagnosed you with a stress disorder or other psych problems, if that stress disorder diagnosis delayed your actual diagnosis due to your PCP inflicting his suppositions on the specialists he sent you to. Any thing else woould be helpful. Maybe this should be in the form of a poll?  Of coure I don't know how to do that.

If you have any suggestions, or can help let me know.  I know there are a lot of Chiari sufferers on here.  Is there any way to know how many ACM members here within the last five years peerhaps? I know some quit checking in with updates.  I think an unofficial poll with numbers and statistics may help the article if the ones polled were actual ACM sufferers.

[blondeballerina07]

i dont have time right now but will write answers to all of your questions in my journal and you can use anything in there!

[selmaS]

I would try to show how long so many of us do seek help....they can still try to say  it could be a result of anxiety and stress or depression.....but a lifetime of pain??? I wonder.

There r some many ways u can approach this...and starting with 2 yrs is a place to start....see where it takes u...and go on from there if u need to adjust as u go...then do so.

I just was curious as to the time frame u chose....thanks : )

"selma"

[bbisweary]

Thanks for helping out.  I picked > 2 years randomly, just as proof that we don't just go through a few months of trying to get answers. It seemed reasonable if a person is more than two years suffering and going from doctor to doctor, then this is a problem and a big one! Do you think it should be longer?

[taylapj]

Hi I would be happy for you to use any thing from my journal entries, my doctors are trying to take me down the route of diognosing me with chronic fatigue syndrome with fibromylegia, this is quite a common mis diognosis, I also have spinal issues that my neurologist hasn't even done a treatment programe for, I had to go private to get physio sorted, I'm on the brink of loosing my job cause of the amount of sickness and risks I present with, I hope you get somewhere with this, I feel like chiari falls into the category of 'hidden illness' that people can't accept as being dibilitating and the only reason we get stressed or depressed is because professionals don't take us seriously.

[selmaS]

Hi....I did a numbers check recently...I can not remember the number, but did post it...so I will look for it.

Also, I went to drs at a young age and it took almost my entire life to get a dx....not 2 yrs...I am wondering y the 2 yrs?......we also do have a newsletter that may help get the article some interest as well......

This community is only 2 yrs old....there r orgs that r around at least 20 plus yrs.....