Re: NSG Says50/50 on Surgery Relief of Symptoms

[Guest guest]

Since most of you know my brother passed away from ALS, whenever I see this

come up I have to chime in so there are not any misconceptions. It takes

several, several months to have a good solid ALS diagnosis, general age on

onset in mid- 40's and above, rarley younger as my brother was (36), one

huge!!! diffrence in ALS and Lupus and ACM and SM is the very progressive

Wasting of tissue, and muscle, AND especialy in the voice box, although I

myslef have slurred speech in ALS it will progress to the point where the

patient is uncomprehendable and Ususaly within a year to 2 years, with NO

marked Relapse in between the onset, weight loss os rapid in most cases as the

swallowing becomes progressivly worse adn again with no relapses in between

the onset. I just hate to see anyone be told they may have ALS when indeed

the symptoms are ACM or SM then look it up in a medical book wihout haveing

the True diagnosis of it. Keep in mind also it affects nearly twice as many

men as woman. hope this helps

Dawn

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[Guest guest]

> I have add all the test ruling out autimmuine disorders- Sle, MS, Lyme and

Guillian Barre' and Mysthania Gravis. The only one they haven't ruled out on is

Spinal Tumor? Need Mri of Spine and ALS? Anyone know how they would test for

ALS?

Anne,

From what I understand, there is no specific test for ALS, just the ruling out

of any other diseases/conditions first. Once everything else is ruled out, if

all evidence points that way then ALS can be diagnosed. There are tests to

suggest ALS, such as nerve conductions, etc., since ALS is a neuromuscular

disorder.

Hope this helps,

Sheila

In Baltimore where it is finally snowing.

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[Guest guest]

Thankyou Terry, just when I see the word of the screen I shudder, cant help

it, its just too complicated and nasty a diesease to be misunderstood, and

wold certainly frighten anyone who alread has ACM, believe me Ive thought

about it many times myself, and althgou the numbers are fairly low of a female

inheritinace of ALS, just knowing its in my familys Genes makes the hair on my

head stand up!!!!. Peace and Blessings to your family.

Dawn

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[Guest guest]

Thanks for chiming in Dawn,

I feel this is really a good post. And enough can not be said about

even suggesting ALS, without solid facts.

has Neurofibromatosis , as some of you know.

Which is capable of attacking the " Mylin " spelling?,

among several other areas in the brain, at any time.

We have known this for 9 years.

The glossery of terms, that describe all the cells and parts of the brain it can

effect is two pages.

We got over that some time back.

I must add, that tho many NSGs, and some members even claim to have knowledge

about this condition, sadly they don't.

Some of the NSGs have evevn said that NF can not affect certain things , that we

have literature about, right down to the exact chromosone, etc.

Some that can not explain certain things about ACM, have simply stated that it

is the NF, if it is not the ACM, as if psychic.

I can at least say that Dr. Frim never acted as if he knew anything he did not ,

know , about NF.

He had the top Dr. that I was already familiar with, come in to check her out.

sadly that's about all they can do , still with this disease.

Is take notes and watch. they can try to remove the fibromas , as they grow,

but they can attack any place in the body where there are nerve cells.

The head and spine being , possibly choice, or any internal organ, if the

disease so chooses.

So some of you may understand how I have been arguing with doctors, for at least

five years prior to ever even joining this group , about CT scans , and MRIs.

that are required every 6 months to a year in .

Only found one family Dr. that agreed with those facts so far, and she dropped

her as soon as , ACM got complicated.

I know there are at least two other members with NF and ACM, who can relate.

And thank you again Dawn. You can't stress enough about what you said.

Terry

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