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Hopeful1963

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Learn about ALS
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Carmel
Been having bilateral leg weakness for a few months, intermitent. Started having muscles twitiches, mostly in legs at and below knees, for two weeks. Noticed more short of breath and more clearing of my throat. Have had all kinds of blood test done and had arm emg/NCV which showed severe Carpal tunnel and ulnar neuropathy. Having carpal tunnel release done next week. My lumber MRI showed bi lateral pinched nerves at L5-S1 and disc bulge at L4. Saw neuro surgeon today and he stated doesnt think leg weakness is coming from pinched nerves or herniated disc. I saw well known experienced neuro who did clinical exam and was adamant that it was not ALS. This is the third time I ahve brought the possbility of ALS up with him and each time he has been adamant that I did not have it. He did not do any EMG/NCV on my legs. Can anyone help me make heads or tails out of this? Im scared! Thanks
 
You have had expert advice, not sure what you expect the forum to add. Your neurologist has had many many years of training. You need to believe what he has told you, or you will get increasing anxiety, causing worsening of symptoms.
 
Your key word in your post is "intermittent". AlS isn't intermittent. It's constantly progressive. While the discs might not be bad enough to be surgical--it doesn't mean that they can't cause pain--and pain causes lack of use--and lack of use causes weakness.

You're having 'symptoms' in all regions--not something that would happen with ALS all at once. Relax and get the nerves fixed. ALS would have shown in the EMG.

Good luck
 
Thanks for responding. I have had an EMG done on my arms, which was clean, but no emg done on my legs. My neuro based his conclusions on clinical exam only. He said I had no atrophy and no other clinical signs of ALS. My legs sure are weak, although at points I seem to be able to do things (played bball last week). Confused by these symptoms. I got really concerned when the twitching started. Thanks
 
The question here isn't "Do you have ALS?" Your doctors have already settled that question: no, you don't. The real questions are:

  1. why do you think you have it?
  2. why won't you listen to your doctors when they tell you that you don't have it?
  3. why do you seem to want to have it so badly?

And don't bother to say that you don't want to have ALS. You've had three different opportunities to change your mind about that and you still think it's a possibility, so you must want to have it and you are going to keep trying to get somebody to tell you that you do have it. Which seems like a pretty sick goal to have, but there is no accounting for personal taste.
 
Interesting thing about my pinched nerves is that I dont really have a lot of pain, I think that is why neuro surgeon does not think that weakness is coming from my pinched nerves.
 
trfogey: I have read your posts. Dont know why you are so harsh on those that have ALS symptoms and are trying to figure out what the hell is going on. Who in the world would want to have ALS?
 
Hopeful, most people who post here have absolutely NO ALS symptoms. Its the continual self diagnosis and disbelieveing the experts that is very hard to understand.
My husband is a neurologist. It took him 15 years before he had trained enough to step into the Neurologist shoes. Thats why its annoying bthat with normal tests, including EMG, people continue to whine that thier doctors should not be believed, but people here on this site and the internet, should be believed.
Ofr course no one wants ALS, but they continue to ignore the fact that they do not, with no evidence to the contrary.
Get it now?
 
Hopeful, sorry if the advice seems a bit "short" sometimes, but these guys have answered these questions hundreds of times, and many times the people asking for opinions and advice just don't want to listen to said advice. You also have to remember that some of the folks who spend their time answering these questions struggle to breath,eat with a peg, type with their eyes or toes, and live with the ramifications of ALS every moment of their day.

Be grateful that you have an answer... your neuro said it wasn't ALS, you're blessed. Wish they told me that.
 
AND, bashing Tr will not make you any friends. Your own doctor has told on three occasions NO ALS, but you persist. Anyone with half a brain would deduce from your post that you want a D X of ALS.
 
trfogey: I have read your posts. Dont know why you are so harsh on those that have ALS symptoms and are trying to figure out what the hell is going on. Who in the world would want to have ALS?

Hopeful1963,

You may have read some of my posts and it is virtually certain that you didn't understand what you read. Just as you haven't understood what you have read about ALS symptoms. You claim that you have ALS symptoms. Your neuro has clearly stated on three occasions that you do not have ALS. Obviously, you do not understand what ALS symptoms are.

You continue to worry about having a disease that there is no evidence that you have or will ever get. The first "no ALS" verdict from your neuro would have been enough to convince a person who didn't want to have ALS that they didn't have it. Yet here you are, with two more "no ALS" conclusions behind you and no further progression of the symptoms that you do have, still insisting that you might have ALS.

Obviously, you are ignoring the opinions of those who are trying to tell you that you don't have ALS, even though they know far more about the disease than you do. The only conclusion that a reasonable person can draw from such bizarre and irrational behavior is that you want someone to confirm that you actually do have ALS and, therefore, you must want to have it. I am open to hearing an alternative explanation from you, though, just to add to my list of the reasons people post in this part of the board, so feel free to enlighten us as to why you're rejecting your neuro's considered opinion.
 
TR: I meant no disrespect and sorry if it came across that way. Something I didnt state is that late last year docs thought I had a parasite and gave me lots of flagyl and I ended up with CNS toxicty. Since then is when all of these problems began. My neuro has not done an emg on my legs, which two other docs have recommended and Im going to have done. He based his opinion on clinical exam only. Based on flagyl effects and no emg, Im still concerned. Im VERY thankful for his opinion but would like to have a clean EMG to support.
 
Hopeful1963, Were the other doctors that recommended an EMG neurologists? If so, why didn't they order or perform the EMG themselves? If they are not neurologists, why are you taking their advice over that of the expert? You certainly have the right to do so, but it is strange, like talking to an eye doctor when your knee is bothering you.

One question for you: if you don't believe that your neuro's clinical examination was sufficient to relieve your fears about ALS, why do you think that a clean EMG will do any better to relieve those fears? How clean must "clean" be, given the fact that you've been previously diagnosed with chemical CNS toxicity?
 
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tr, I salute you!

Man, you write well! Simple, straight-forward and from the heart!

How can anyone not read what you write and not be comforted?

If I were to ask what so many have asked: "The doc says I do not have ALS. Should I believe him/her?"

And if TR were to give one of his classic responses:

"The question here isn't "Do you have ALS?" Your doctors have already settled that question: no, you don't. The real questions are:

why do you think you have it?
why won't you listen to your doctors when they tell you that you don't have it?
why do you seem to want to have it so badly?


And don't bother to say that you don't want to have ALS. You've had three different opportunities to change your mind about that and you still think it's a possibility, so you must want to have it and you are going to keep trying to get somebody to tell you that you do have it. Which seems like a pretty sick goal to have, but there is no accounting for personal taste."

I could only hope that I'd wake up and smell the roses after having read such an enlightening post!

TR, if I ever need a swift kick in the butt, you have my permission! You don't kick that hard and you get the point across! Of course, you already knew that...
 
TR: One was a neurologist and one my gp. They did order it and Im having it done. Just anxious until I have it done. Thanks for your insight
 
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