How many people on this forum..........

[4rhl1981]

have been told by a neurologist that they do not have ALS only to be told by the same neurologist or a new neurologist that they now have ALS? I ask not discredit the neurologist but to maybe help some people cure they're (and my own) fears that they may have went to early or are still in the beginning stages. Also I would hope that the neurology community if this is the case would try to study the early stages rather than the latter stage and then try to cure, remit, or reverse.

 

[Boo Boo 621]

Raoul,

Are you in the process of being diagnosed? Do you have severe symptoms? I'm sorry, I haven't read all of your posts I don't believe.

 

[4rhl1981]

I had a grandfather, and my mothers x-boyfriend (Bruce) died of Atypical ALS, I have twitches, atrophy, clinical muscle weakness, among other symptoms. So far I have had 2 clean EMG, NCS, MRI, and one neg. MG test. So I have not been DX with anything but find the symptom very similar to what transpired with my grandfather and Bruce. I'm think I may have a myopathy that will eventually be unable to communicate with the nerves due to degeneration, the process is different but has the same end result, I know that my illness is caused by a toxin.

 

[4rhl1981]

This is amazing I go to Primary Care Doc, he say he thinks I have a Muscular/ Neuro problem, but the last Neuro I seen said my EMG NCS and MRI r clean that was a month ago! So around in a big circle I go again! Maybe I should just end my suffering now!

 

[Al]

My GP said he'd never seen ALS but sent me to a Neuro who diagnosed me right away. 4 opinions later, I think I have ALS.

AL.

 

[Tall John]

Get yourself to an ALS clinic

First neuro told me I was too young and looked too in shape to have ALS !

 

[CindyM]

Raoul, read my post on the other thread. I, too, have a neuro-muscular problem but it is no big deal. Neuro-muscular does not have to be ALS.

 

[CB1977]

You should try to get to an ALS clinic if at all possible (Cleveland Clinic). They are one of the best. If you go to a ALS clinic where they see it every day and they tell you that you dont have ALS, I would say that you should believe them. They will also have good ideas on what you could have besides ALS that is similar to ALS as far as symtoms. I feel your frustration, I have been to more than a few doctors and specialists over the last 7 months, had 2 clean EMG's, and tons of blood tests, MRI, CT, ect. All clean. I am going to an ALS clinic in Jan. to finally get that out of the way so that I can focus on other things. Good Luck

CB in Ohio

 

[Sammantha]

I have never been told by my neurologist's that i DON'T have ALS but they sure as heck wont tell me anything else....... Basically they tell me they dont know whats wrong and then i get on with life the best way i know how..... If you are young and or you actually cant move a limb or speak, the neurologist will see you as just fine...... The best you can do is to let whatever it is evolve because getting a diagnosis is not going to make things clearer... Best of luck, Sam

 

[4rhl1981]

Raoul, read my post on the other thread. I, too, have a neuro-muscular problem but it is no big deal. Neuro-muscular does not have to be ALS.

I couldn't find it?