My Story - input appreciated.

[Gretz]

Thank you so much Laurie.
They have sent me for a full panel of blood work as well. I am still worried about the exercise intolerance that I feel. Is it at all possible for the exercise issues to be related to als given my clean emgs and clinical exams.
Really want to move on and forget about this but it is hard because I feel short of breath. I did recently have a normal pulmonary function test.
Thank you again.

 

[Bestfriends14]

You have been cleared of ALS and that is fantastic news. While you still do not have answers to your perceived illness, you have been given the answer, via both this forum and testing, that you do not have ALS. Again, fantastic news. As advised by Laurie, who is extremely knowledgeable, go live your life.

Take good care and good luck in the future.

Goodbye.

 

[Gretz]

Thanks to all for your replies.

My ongoing concern is my fatigue and exercise intolerance. I have read many accounts of folks not being able to complete workouts or running times slowing down significantly and as they began to explore the reason it eventually turned out to be a part of als. Even one of Mr. Lou Gehrig’’s telltale signs that sent him to the Doctor was his diminishing athletic prowess and dropping batting average. Please share with me your experiences and knowledge of exercise intolerance as a sign/ symptom of early als. I am concerned that an emg may have been done too early , or perhaps it could be respiratory onset that is causing fatigue and shortness of breath and reduced muscle Endurance.
Thank you for your time and patience as I work through this significant worry.

 

[Nikki J]

3 neurologists said no, clean emgs say no, normal pfts say no to respiratory onset.

Did these people have extensive testing that was all normal? I doubt it.

I am someone who had an emg incredibly early because I was having it coincidentally for a research project. My symptoms ( which was failure/ clinical weakness in one muscle) was nothing I would have gone to be seen for. Exercise intolerance and fatigue came significantly later.

No your doctors are not missing anything your emg was not too early.

Return to the doctor with your question but I am closing the thread you have asked and we have given our opinions. If you choose not to accept them it is your right

 

[lgelb]

1) If you had respiratory onset ALS, your pulmonary function tests would not have been normal.

2) How could you think your EMGs could have been too early, when you just had one day before yesterday, after perceiving that you've had symptoms since April?

3) Lou Gehrig was a very fit athlete in his prime, so it stands to reason that his first hints of a problem (fewer hits) would be more subtle than for most of us. But if you've read diagnosis stories on these Forums, today, you will find that exercise intolerance and general fatigue is not typically how ALS presents. Instead, you will see statements about foot drop, inability to lift/hold objects, speech deficits that are perceived by others, and the like.

You appear to be fishing for a diagnosis, one that no one affected by it would ever want. When you stated earlier, "I am so convinced I have ALS," you have stayed with that belief despite overwhelming evidence to the contrary. We are all convinced the opposite.

So I don't think there's anywhere to meet in the middle here, and everyone here has recommended that you follow up with your PCP with no worries as regards ALS. Since we have nowhere to go but in a circle, we're closing the thread. All the best.

 

[Gretz]

Further questions - bulbar concern

Hello,
I ask for your patience and understanding as I return to ask another question and am very worried about ALS.

As mentioned in my previous thread, I have been throat clearing for some time and recently coughed after drinking water/juice two times. My voice seems weak as well.

The sticky mentions that a clean emg in the sterno neck muscle is sufficient to rule out bulbar. I had a clean emg full body including the sterno last week. Based on all of your experiences, is this emg
enough to rule out bulbar that includes swallowing concerns and weak voice. I do have twitches across my body and and sometimes in my neck area.
Thank you for your time and your thoughts.

 

[KarenNWendyn]

Re: Further questions - bulbar concern

If you had a clean EMG full body including neck muscles, you do not have ALS. Twitching is common, nonspecific, and meaningless.

 

[Bestfriends14]

Re: Further questions - bulbar concern

You've had this very same question answered three times. There's no need for you to ask again. Please show the forum members understanding, kindness and respect by not repeatedly asking the same question again and again.

There's nothing more for you on this forum as you have been cleared a few times now for ALS. My only suggestion for you at this point, is to perhaps seek some counselling as to why you are unable to let go of your obsession with this disease. Gretz, I do wish you well in the future, but again, please seek counselling. You are blessed with not having a terminal illness. Many members on this site wish for that very thing.

Goodbye.

 

[ShiftKicker]

Mod note, merged threads. Gretz, please do not post here again. You have been cleared of ALS. Please address any further health related questions to your doctor.