Update- Opinion about a Second Opinion

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Tj1974

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Hello, I posted a few months ago regarding weakness in my legs and arms and shortness of breath. I have been seeen by two Neurologist, one was a university neuromuscular specialist, and I have had two EMGs. The bottom line is I don’t have ALS. The doctor said I may have, “fatigue but not clinical a weakness of any sort”
While I’m clear for ALS, I still have lots of fatigue, tight muscles, tremors and twitches. I am also now having issues swallowing, speaking, and typing, so the search for a diagnosis unfortunately continues.

However, I’d like to share that during my last clinical review, I mentioned to the Doctor for the first time about some dizziness I’ve been having off and on when jogging for the last 4 years. It only happened for a short time and resolves quickly if I slow down or walk a bit. I also told him about a time 3 years ago when I stood up too fast and then immediately yawned, fell and passed out for a few seconds. I had those symptoms checked by a cardiologist years ago and didn’t think anything of it since. My GP didn’t think much of it either and no further investigation was made at the time. I have just sort of lived with it since then. However, the doc was interested and mentioned I could have a problem with my bodies ability to control blood pressure. I’m now awaiting automatic function testing. More time and more stress. He said POTS is a possible treatable explanation for some of my symptoms. Of course, there are other more dire explanations as well but I’m trying to remain positive.

I now know I don’t have ALS, I only mention this new development because, I think it might be helpful to others. I didn’t tell the doctor I had any dizziness when he asked because I was only thinking of my new symptoms that had me fearing als. The advice here is always to tell the doctors what is going on and let them decide what tests to have and not to have. But I clearly didn’t follow that advice. This of course wasn’t on purpose, I was just hyper focused on these new symptoms I wasn’t even thinking about the old ones! I’m not sure the doctor would have done the 2 EMG had I mentioned the dizziness episodes.

Anyway, I hope my experience helps others. I also want to thank the very courageous PALS and CALS who have given me their advice on this site. This site is such a unique resource. The quality of advice, knowledge and compassion is a blessing to many. While my search for a diagnosis isn’t over, I am in the wrong place here. All who are effected by this awful disease remain in my prayers and I wish you all the very best.
V/r,
 

ShiftKicker

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Here is the prior thread for reference:

Thank you so much for returning and updating folks on the forum. I hope you will finally get some answers after all these months with this new direction of inquiry.

All the best
 
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