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You are right. It is rotten. It stinks. It is unfair and on top of all of it we need more research and a cure. :cry: Cindy
 
Tom,

When is your appointment with the als clinic?
I had a couple of reg nuero's tell me it might be but they didn't specialize in that area so I took it with a grain of salt. It is not an easy disease to diagnose and you really did not have every thing ruled out.
you need a spinal tap, mri of brain not just a cat scan, and probably plenty more bloodwork.

As everyone else will tell you on this forum, it's hard not to worry....

But if you do have ALS enjoy every single good day now and don't waste it on worrying because there is really nothing you could do. Trust me I wasted alot of time worrying and I was getting around alot better than I am now and could have been enjoying my life instead of having constant anxiety attacks.
Ask your dr to give you something for anxiety. It will help.
I never even new what anxiety was until I started with my symtoms.
And I still don't believe the specialist that it is not als but the only thing I can do is wait and see.
I am 38 with two small children and it is not easy.


crystalkk
 
How about an answer

okay, I rant a lot. But, come on for goodness sakes.
If we were a group of 500,000 the drug companies would be fighting over the supply to our cures. But, because we are so few in numbers the effect does not match the cause.

Does anybody know anything about a new drug that is about be tested on a handful of ALS confirmed people?

I'd be the perfect candidate.
 
Question for Cindy

No, and I am about ready to declare myself cured, (at least for tonight.) The changes in my symptoms are so subtle that I don't even report them. I am on a six-month review with the ALS clinic, where they said to prepare myself for getting worse but but they also said I might stay the same. I am planning on staying the same. I cannot climb or jump or hop on either foot but at my age I didn't expect to play hop scotch anymore anyway!

Cindy
I find this to be quite interesting.

Were you on the path towards an ALS Dx and your symptoms stopped so to speak?
 
Not stopped, per say. Just came to a standstill. I do feel stronger if I get lots of rest and if my CPAP is working properly. Lack of oxygen makes me incredibilly weak. But the muscle pain and cramps are the same, my reflexes are brisk, and so on.

Only 2 things have not happened again. June of 06 I lost the use of my legs and it took months beore I was strong enough to get up without reaching for assistance. And all last winter I would have episodes of seeing double.

Oh and there are tiny-very tiny- increases in symptoms. Like this time last year I didn't have occasional trouble chewing or chocking. And I wasn't tripping when overtired. But I am at a place in life where I can get lots of rest, and I am used to my symptoms, so most days I feel pretty optimistic.

Thanks for asking, Tom. My ALS clinic says I am a puzzel, one of only about 5-6 such cases they have seen. My theory is some of us have to be part of that small number. Why not me? Why not you?:) Coridally, Cindy
 
Tom i was like you ,very angry . I think weve all been there too . Now have your wife hold up two fingers now you squeeze them ,she will know if you are weak ,another one is to stick out your tongue and have the wife try and push it back in using a spoon . If you just have a little weakness and not alot .Keep track of it by repeating the same tests at home . This way you can be up to date and see if there is any progression
Geo
 
Tom,

When is your appointment with the als clinic?
I had a couple of reg nuero's tell me it might be but they didn't specialize in that area so I took it with a grain of salt. It is not an easy disease to diagnose and you really did not have every thing ruled out.
you need a spinal tap, mri of brain not just a cat scan, and probably plenty more bloodwork.

As everyone else will tell you on this forum, it's hard not to worry....

But if you do have ALS enjoy every single good day now and don't waste it on worrying because there is really nothing you could do. Trust me I wasted alot of time worrying and I was getting around alot better than I am now and could have been enjoying my life instead of having constant anxiety attacks.
Ask your dr to give you something for anxiety. It will help.
I never even new what anxiety was until I started with my symtoms.
And I still don't believe the specialist that it is not als but the only thing I can do is wait and see.
I am 38 with two small children and it is not easy.


crystalkk

Hi there,
this is my point in my mums diagnosed....
she was in hosp for 5 days and they gave her diagnosed of mnd bulbar onset.
Is this possible? From readings i believe it takes at least a week to diagnosed Lymes... which is (even if rarely) apparent in bulbar region!
She had an EMG on her right side by a tech, not a doc.... his feedback according to my mother was positive - and that he didnt see anything untowards!

Very confused in the whole diagnosed process.
Is there anything else anyone can see as being the issue here? I found multi focal disorder - hypoglossal neuropathy and primary lateral scelosis as possibilities.... does anyone else have any ideas?

My mother has a 2nd consultation set up with an als specialist this Thurs.. (only due to my relentless calling, due to our shitty national health service)... so I'm hoping he can shed some light!:?:
 
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