Many symptoms, normal EMG

[Al]

Thanks for letting us know what's going on. Some days new members need a tough love approach. Guess we didn't scare you away with ours. You probably have something going on but I still don't think ALS.

AL.

 

[BethU]

i have heard of some who can develop als and only live a few months,i wonder though if it was as there are a few things believe it or not worse than als but the same symptoms but servival rate is less than a year/quicker progression.
take care.
caroline

Caroline, I think you've hit the nail on the head. (Although I know absolutely nothing about medicine or science, I never let that stand in the way of my offering an opinion )

50 years ago, people were looking for "the cure for cancer." Everybody knew what cancer is ... cell reproduction run amok ... but nobody knew how you got it, or why it might pop up "suddenly" in your lungs, or a breast, or the blood stream, etc. Now we know there are a number of different processes going on in different kinds of cancers, and many, many causes: genetics, life style (stomach cancer being #1 cancer in Japan, for instance, apparently due to diet), viruses (including some that are contageous, such as feline leukemia and the virus that leads to cervical cancer), toxins and carcinogins up the yin-yang, and on and on. A treatment for one kind of cancer will not necessarily work for another.

Isn't it possible that when researchers learn more about ALS, they may discover that there are several different processes with different causes. Like cancer, they lead to the same result: in this case, motor neuron death. It seems from what I've read, that bulbar and limb onsets are two slightly different animals. Some researchers are now looking at the nerve muscle junction in connection with ALS. When I took Mestinon (which addresses this specific area for another disease), it gave me a remarkable boost of energy and strength, and improvement with other symptoms as well. I have communicated with other PALS online who have had the same benefits from this med. Yet, it apparently does NOT help that many PALS, for if it did, everyone would be taking it!

I'm sure there are reasons that some patients experience fast progression, and some slow. They may actually have different strains of the disease, just as there are strains of breast cancer that are highly invasive, and some that are not.

This is probably real obvious to people who know stuff about medicine and ALS, but it is interesting to me, since I have had beneficial results from Mestinon, a non-standard treatment for ALS, and I don't think it's the placebo effect. And so I figure, there must be a reason why it works, and the only thing I can think of is that there is at least one strain of ALS in which the nerve-muscle junction is part of the problem.

BethU

 

[olly]

hi bethu

i also believe there could be different reasons for some individuals having mnd .
as for progression and different strains,ms,parkinsons and many other neuro deseases have different strains depending on progression and varying symptoms.
this could definatly be the case in all types of mnd.
but also some peoples bodies are able to cope with the desease process better than others.
take ms for instance,some ms patients brains are able to repair the damage in the early years sometimes to the point that like myself they did serial mri's for 7yrs before finally ruling it out as it may not show up if the brain can repair minor damage inbetween attacks.
they say no two people are exactly the same in any desease on how it effects them.
this is something i think we need to understand when others may have a different view of there symptoms compaired to our own.
compairing yourself to others who have the same illness is not good,you know yourself what feels right or wrong.
sorry for hijacking the thread again:lol:
take good care.
caroline:-D