Finally joined

[Blade~]

Hello everyone,

After a year and half of discovering this forum and having the scare of high possibility of ALS finally I decided to join this forum. First, I probably don't have ALS but my symptoms were so similar and so real that every doctor I went to immediately started to diagnose me for ALS! First muscles started shutting down and atrophy (they never come back since) to frequent daily muscle twitching all over the body, difficulty controlling saliva (one symptom that finally went away after several months!), moderate brisk reflexes which I never had in my life before. I'm in my 40s and a male so also fit the profile. My symptoms were (and many still are) so close to ALS that even the neurologist immediately started to run tests for ALS! However EMG could not used since most of the muscle atrophy and paralysis happened in my neck and below the jaw, the neurologist said they are too fine to be used as definite diagnosis. So they kept telling me to come back over and over. Sometimes my symptoms would progress, some however would improve (and this was one sign I probably didn't have ALS, but again, nobody would tell me either way). So after about 6 months they finally gave up on me and just told me to come back if I have more severe progressive symptoms.

But during this time I was fully convinced I had bulbar type ALS so I know what it feels like and I can relate to many people here - at least at the beginnings. Again it's been a year and a half now and looks like most (but not all) symptoms at least stopped progressing. Still have random muscle twitching all over my body, stress/anxiety seem to make them more prone and the neck muscles never came back so I had to learn different ways to swallow and yawn.

Anyway, I am here now because I feel I am involved in ALS either way and naturally became interested. If I turn out to have a slow progressing ALS then I am at least already here, if not then I could be a good example of how some (mysterious) neurological disorders can resemble ALS almost to the exact match. So I'm glad that I finally joined!

 

[Atsugi]

Welcome Blade. Sometimes the doctors are stymied and can't give us a name for our disease. That's frustrating. But in the final analysis, all you can do is treat the symptoms. Lets hope you don't get the final symptom.

My advice to everyone, ALS or not, is to live life like there's no tomorrow and then be grateful for every day you wake up on this side of the dirt. --Mike

 

[Blade~]

Thank you Mike and yes I know what you mean by appreciating life, I also look at life VERY differently since the start of my condition.

 

[chally]

welcome blade, and thank you for the post. all post are good as we learn to share what is going on w/our bodies and minds as we traverse this journey. keep'em coming. later chally

 

[Nikki J]

Hi
You have certainly had quite a time! I hope you have had at least one opinion from a neuromuscular specialist at a teaching hospital ALS clinic. In your position I would want at least 2. If you have I would consider asking to be referred to the NIH program for undiagnosed conditions. One of our PLS members got her diagnosis there

 

[Blade~]

Hello Nikki and Chally, thank you for your reply and the advice.

Nikki: The neurologist I have seen was at our local University hospital but not ALS or MND specialist. Thanks for the encouragement I think I will go to a specialist because I am very frustrated, especially with the muscle twitches that just continue on a daily bases and other symptoms like the brisk reflexes not improving or any of the atrophied muscles not coming back. The only thing I am afraid of is that I will go through the same routine: come back in a few weeks ... then again ... and at the end nobody will be able to tell me anything concrete.

Chally: yes, that is why I decided to join, I feel part of the group no matter what. I already learned so much about this condition so I hope I can help out either way. My case seems to be a fairly unique one where I have the very real symptoms but not a definite diagnosis, just a wait and see. Either way I am happy to join and be part of this group, maybe in some ways it will help finding out more about this mysterious condition.

 

[Nikki J]

Definitely definitely go to a neuromuscular specialist.

 

[Atsugi]

Blade, I want to emphasize Nikki's advice.

If I thought for a moment that I had a terminal disease, I would spend all the money in the world to get the opinions of only the best doctors. Go to Mayo. Then I would do it again for the second opinion. Good luck. --Mike

 

[Blade~]

Yes I will for sure in a couple of weeks, first I think I'll try the University again but with a specialist this time and if I get a positive or uncertain again then I can go to Mayo which is only about an hour and half drive. Thank you for the encouragements!