How many people suffer from ACM

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How many people suffer from ACM

Postby keggler » Tue Jun 26, 2007 1:20 pm

How many people on this site actually suffer from ACM ?How many form S/M? How about other related illnesses?

Thanks in Advance....Jerry in Carolina...
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
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CM1-S/M-Basilar Invagination
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Patients

Postby razzle51 » Tue Jun 26, 2007 1:24 pm

How Many People Does Chiari Affect?

There are no "true" numbers on how many people have Chiari. However, it is estimated that anywhere from 200,000 to 2,000,000 people are affected in the United States. It is estimated that 1 in 1,000 are have chiari symptoms.

FROM CCI
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Postby daynthelife » Tue Jun 26, 2007 2:07 pm

Because syringomyelia can occur in association with other conditions, estimates of the number of Americans with the disorder vary widely, but a conservative estimate is that about 40,000 people in the United States are affected

I took this info off of the National Institute of Neurological Disorders and Stroke facts sheets page.
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Postby SMLady » Tue Jun 26, 2007 2:55 pm

Hi, Jerry. I think your question was how many people on this site suffer from one or both?

I have idopathic SM from T1 to T11, scoliosis, bulging discs, and pinched nerves. I was checked for CM last year, and they didn't find it. I don't have a tumor and have never had a back injury. I just woke up on Christmas Eve 2004 and was in the most excruciating pain of my life and could barely move or breathe. I am lucky, though, in that I had a diagnosis within 2 months. They just happened to send me to the right people. I've seen on here that some people go for years without a diagnoss.

How's the movie business?
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Re: How many people suffer from ACM

Postby Leonna20x » Tue Jun 26, 2007 3:11 pm

keggler wrote:How many people on this site actually suffer from ACM ?How many form S/M? How about other related illnesses?

Thanks in Advance....Jerry in Carolina...


I have chiari 1 malformation, was recently diagnoised. Which was such a relief , as have been going to doctors for years and being told i was fine. i thought i was going mental lol.
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Postby xenifuse » Tue Jun 26, 2007 3:13 pm

SM for me, thorasic. Not sure about CM, we're still investigating that.
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Postby Ryzing » Tue Jun 26, 2007 3:31 pm

Hi Jerry - and everyone else,

I have SM - syrinx from C3-L2 and Scoliosis. :? I also was diagnosed with Fibromyalgia last year.

Diane 8)
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby Sandy » Tue Jun 26, 2007 3:38 pm

Hi Jerry,

Thoracic SM for me. T1-T6, no ACM.

love,
sandy :D
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Postby Amison82 » Tue Jun 26, 2007 3:50 pm

Jerry -

I have a syrinx from T12-L1 to T8. I don't have CM though. I have been through a bazillion tests it seems and they have found no tumors or spinal stenosis either. My first neuro was convinced I simply had carpal tunell and that it was all in my head even with the syrinx diagnosis. I have been told they won't operate since it could produce more damage (yeah as if the constant pain, freak muscle spasms, headaches and serious bowel problems are a walk in the park right?) Anyway, I too, had no injury. Just tried to get out of bed one day and couldn't. I did have meningitis when I was 2 (25 now) and I have read that could be a cause...who knows. At this point I'm just taking it day by day...
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Postby Debster » Tue Jun 26, 2007 3:55 pm

I was diagnosed early in 2007 with ACM-1. No spine films have been done so I don't know if I have any of the other related conditions. I am hoping to be able to get to TCI the end of this year.

Deb
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Postby kiminfla » Tue Jun 26, 2007 4:21 pm

Hi Jerry, Good to see you -- I have CM only. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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chiari

Postby razzle51 » Tue Jun 26, 2007 4:57 pm

oops I read it wrong . Thats the Nation count.

Chalk one up for me . I have Chiari which my NS says its fixed . I have SM from T4 -T10 .
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby specialmomx2 » Tue Jun 26, 2007 7:38 pm

I have:

Thoracic SM. T3-T5
EDS
Cervical stenosis
some positional CSF flow -but they don't think that caused/causes anything :roll:
Reactive Hypoglycemia
Epilepsy ...maybe

I don't have:
ACM
TCS
CCI
Epilepsy ...maybe


-Paula
"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog: www.onesickmother.com
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.

Postby MrChiari » Tue Jun 26, 2007 8:48 pm

I have been diagnosed for over 5 years with ACM and have not had any surgery or treatments. Other than the chiari I am in the process of finding other problems.
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Postby kathymichelle » Tue Jun 26, 2007 9:57 pm

I have ACM, Basilar Invagination(fixed with my PFD in April 2006) EDS, Thoracic Outlet syndrome...and migraines, CFS and other crap ailments!
Last edited by kathymichelle on Sun Jul 01, 2007 5:08 pm, edited 1 time in total.
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