P' off!

[4rhl1981]

I don't even have a ALS DX and I am incredible p' off! Its been 130 year that this disease has been recognized and we still have no definitive idea what the hell is the cause or how to even DX it! It like a guessing game and it seem only when you start to lose multiple functions and they can't think off anything else you have ALS DX, that presents it self a hundreds of different ways. This is ludicrous, I can even find any consistant information from site to site. But you have a terrible disease like AIDS and it only takes 10 years to find a treatment plan. Which is a great thing, but come on a 130 years! :evil:

 

[BethU]

If ALS were contagious, I can bet you any amount there would have been a cure 10 years after Lou Gehrig died.

Or if ALS affected more than 5,000 a year in the US.

Of if Magic Johnson had gotten ALS instead of AIDS.

Just wondering ... were you this p**** off about it before it directly affected you ? I sure wasn't. It was nowhere on my horizon except as a disease I didn't want to think about.

 

[Blizna]

Look, recent medicine cannot even cure simple cold, because its virus. If ALS were contagious, it would be caused by viruses or bacterias and so it would not be too hard to make vaccine.
I hope there will be breakthrough in stemm cell research, since there is no other way how to cure ALS, where unreplicatable cells are gone.

 

[CindyM]

Anger is energy, so being upset in this situation is a waste of precious energy unless channeled into something positive. Maybe we should be talking about how to raise money to fund research, for example.

But maybe money is not the only thing we need. Hundreds of thousands of dollars are raised for diseases like cancer or MD, and they still do not have a cure for those things either. Research is a long and slow process, and also costly. I only know we are far behind in the process.

 

[Marjorie R. Wilcox]

Yeah, if you have chronic pain, they diagnosed you with fibromyalgia although it might very well be something else. Any pain at middle age? Then it must be arthritis. I think people want a NAME for what they've got and then they feel better? Doctors are in a hurry too much rather than to really study and test you enough?

Rick has a MND (motor neuron disease) and it has been named ALS. I am not absolutely sure that's what it is because he has such slow progression. Anyway, if we don't want to shock people we tell them he has a MND. That is for sure. If we say ALS they jump back.

Let's hope Rick's slow progression is because of his attitude, activities, and the special diet he follows for his diabetes (no white flour, no artificial sweeteners etc.)

We are taking bets that a breakthrough is coming very soon for ALS research into at least certain strains of it. We would like to see Bulbar come first since it is the most vicious.

 

[brendapals]

Thanks Marjorie for sharing that about Rick's progression.

I credit my own slow progression to my positive mental attitude, refusal to give in, and general "well feeling".

I went with my hubby this morning to be his driver after his endoscopy, yeah, he got the good drugs. Anyway, I saw several nurses I used to work with, and it's always so fun when someone says "gosh, you sure do look good", I usually just thank them and move on!

take good care,
-b

 

[danjay]

My diagnosis was just changed in November from MND to ALS. My progression also is very slow so I take the advice about good atitude very much to heart. In terms of this thread, what I think about is my PEG tube and bipap machine, without which I would already be gone. As it is, I am functional, alert and involved. Although these were not developed to treat ALS, they are a godsend for us. I am not saying one should be content or satisfied, but we are not without tools to fight the fight.
Dan

 

[CB1977]

I think stem cell research is going to lead to something significant soon for many neurological diseases.

 

[4rhl1981]

It not just ALS that p' me off. Its modern day medicine in General, they seem to just guess what you have than to spend the money on the proper testing, I wonder how many people have ever been handed a drug and said hey let see if this work when there is testing available but its to expensive to do. Its seem if a Doc can't DX you in 15 min, it must be psychologic or will have to wait and see, instead of doing the research on the patient to see what is going on with them and then record it and put it in a national data base of DX. In the US you can have one symptom and get 10 diagnosed depending on who you see, its like a joke and rip off. You go see these Doc they run all kind of test half which aren't even necessary and which your insurance barely pays for, leaving you with thousands of dollars in bills just to tell you "da I don't Know" come back so we can do it all again, then they want to treat you for something that going to kill you anyways to extended you life for a few more months and then they take your estate to pay the med bills, or they cure you and your financial ruined for life and get never get out of debt with out ruining your credit, sorry just needed to let my frustrations out.

 

[patricia1]

It Seems Anything With The Brain Parkinson,alzheimer,ms.md.to Name A Few
Its Not Only Als
I Think The Brain Is Still A Mystery
Pat