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Hey Double, I understand you're very cautious and vigilant. In general, it's normal to be afraid of a terminal disease. You are moving more toward paranoid.

While I'm watching this thread , I see that your fear is causing you to ignore really smart people, and your fear is making you second guess your doctor, as though you have a better understanding of ALS than he does. Since you don't have a medical degree, and I think you probably don't understand ALS, either, I'll try to give you the comfort you really deserve.

A neuromuscular specialist has examined you physically, analyzed your history, seen the results of laboratory tests, and reviewed the results of some really high-tech, expensive tests that doctors rely on to diagnose or rule out ALS. He said no ALS.

He said you don't have ALS. Now, he doesn't know what else it might be. So, maybe there's some other things to see. But it’s NOT ALS. You’re not dying.

All your posts have been reviewed by really smart, educated people who have a TON of experience with ALS. In fact, most of the people on this thread know ALS BETTER than most doctors. And they were really polite, but they all said you don't have ALS.

Some people use weasel words to be polite. The test "indicates" or "suggests" or "at this time."

Now you say you're not sure. You have more questions, because you don't understand ALS. I hate to break it to you in an impolite way, but just because you don't understand the science, doesn't mean you might still have ALS. You don't.

You're wasting your time chasing a disease you don't have, and worrying yourself. That ANXIETY can be life-changing. It often destroys relationships.

I wish you luck with your doctors. IF you don’t feel you can rely on the doctors you’ve seen, then get a second opinion at a world-class clinic, like Mayo or Cleveland.
 
Thanks Mike and lgelb and all who replied, y'all have been extremely helpful and I thank you with the bottom of my heart. I will leave forum for now, and talk to my Dr when I see him next in April. Also, here shortly I will be throwing in a donation. Thank you all for what you do. Goodbye.
 
hello I'm back with a couple of questions and I'll be out of you're hair. I have been having shortness of breath for over a month off and on, sometimes accompanied by chest pain but feels like I can't get enough air, it even happens when I'm asleep. Does shortness of breath w als come and go or does it stay always once it starts? And I've been having leg spasms/cramps for over a year, would acute/active denervation have shown up by now if it was limb onset? Thanks and sorry for taking up yalls time.
 
With ALS, symptoms stay and worsen. They don't come and go.
 
Hi Kim, so ur saying if my shortness of breath was caused by als it wldnt come and go and it would be constant, all day and night? Thanks.
 
Double A, thanks for the new input. It's not related to ALS. It could easily be caused by anxiety. Or sedentary lifestyle.
 
AA, you might want to ask about screening for RLS/ a sleep study. But the history you've presented overall doesn't sound like ALS. Ask your neuro what s/he thinks is still on the table, and the steps to narrow down a final dx.
 
thanks atsugi and lgelb for replying, I've sent my nuero an email about it recently but I haven't heard anything yet. I wldnt mind doing a pulmonary function test to see where I'm at on that. My next nuero visit is an EMG in April. Is shortness of breath w als typically an early symptom or late if u mind me asking? And if I've been having leg spasms for over a year do you think the EMG wldve shown ongoing active denervation if it was als? Thanks y'all.
 
Truly you are not describing ALS and that's about all we can say.

ALS presents differently depending on which nerves are affected so breathing can be affected first - but you started out by trying to indicate you had leg onset, now you want to add breathing onset. It doesn't really work that way.

Please let us know after your April appointment. If you have been having 'symptoms' for over a year the last EMG would have shown ALS were that the case. Please read the post titled Read BEFORE posting - it does answer your questions and saves our paralysed members from having to say the same thing over and over. I do feel you have been quite clearly answered. All the best.
 
affected, thank you for the reply. I will wait till April EMG appt, and go from they're. Thanks everyone for yalls time and god bless all of you.
 
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