Bulbar ALS, do the symptoms match?

[Andy Cap]

Hello everyone!
First of all I'd like to apologize from everyone who has ALS diagnosed. It is not my intention to mock anyone or sound disrespectful. I genuinely wish to get view from people who are experiencing the disease first hand.

I'm a 36 year old male and I have to admit that I have history of Generalised anxiety disorder however I'm father of young family and work in a directorial position so that has never been serious enough to affect my outside life. For now at least.

I've been having these most strangest symptoms for few months now. It all started with my face feeling numb few months back. I also had these twitchings all over the body (mostly in thighs and arms). I went to see doctor who put it down to tension neck. Few weeks went and I fainted in shower for a second. Then I was sent to brain MRI which came out clear. After that I was sent to neurologist by the doctor "to rule out ALS". The neurologist was this fantastic roughly 60 year old professor of neurology who did very little clinical studies but flat out said that he is "over 100 % certain I don't have ALS". He put it down to stressed muscles and anxiety but gave me his email address. He said that he had seen dozens and dozens of ALS patients during his career and I don't fit the criteria AT ALL. This was three weeks ago.

Eversince I've been getting these peculiar feelings like I get too much saliva in my mouth (although I can swallow it alright), I've been biting occasionally (gently) my lips and tongue and noticed this strange tingling/numbness in my tonque and couple of days back when I stick my tonque fully out I see some movement/vibration on the muscles on top of the tongue but when I relax the tongue and pull it back little bit the twitching stops. And I don't feel the twitching at all. Just see it and only when I put my tongue completely out. My wife, mother and sister say that my speech is no way slurry or anything. I've been reporting these things via email to neurologist who see nothing that would point towards ALS. It should also be said that I grind my teeth during night and eat lot of nicotine gum during the day (I quit smoking 10 years ago) Which affects my jaw and I can hear this crankling noise when I open my mouth fully.

I have to wonder whether I should just keep pushing my case and do these symptoms match bulbar ALS? What do you think about neurologists opinion? I've rarely if ever seen doctor so adamant about anything. I went to see ordinary doctor yesterday who said that he didn't see it as anything to do with ALS and thought "twitching is borderline normal" but this was very young doctor who also said that he could put me to other neurologist if I wanted to calm my mind although he felt I should really see physiotherapist first.

I most respectfully and humbly ask your opinion and feelings about this. Thank you very much beforehand and happy easter to each and everyone of you.

 

[Nikki J]

Not remotely like ALS. Almost everything you describe is feeling. If you read the sticky you know ALS does not start with feeling anything. It is NORMAL for the tongue to twitch when sticking it out. When my ALS doctors examine me to see if I have progression to bulbar yet they always watch my tongue in resting position
It sounds like you have a smart experienced neurologist. Believe him

 

[Andy Cap]

Not remotely like ALS. Almost everything you describe is feeling. If you read the sticky you know ALS does not start with feeling anything. It is NORMAL for the tongue to twitch when sticking it out. When my ALS doctors examine me to see if I have progression to bulbar yet they always watch my tongue in resting position
It sounds like you have a smart experienced neurologist. Believe him

Thank you very much for your thoughts Nikki!
I did read the sticky and granted lot of the issues were covered there. And I do admit that my anxiety might be the real reason behind all this. I've been going through therapy for six months now and my therapist feels we have touched some touchy subjects from my childhood (my father's alcoholism and suicide) and she feels they are coming out with fear like this. Still it's hard for me to get over the fact that it might just be my feelings feeding me with these sensations.

the neurologist said that he had seen so many cases that he recognizes potential cases basically as they walk in and talk for a while. He said that there are lot of other things causing similar symptoms that he is looking for but lack of these symptoms (which he didn't specify) automatically rules out ALS. And I don't think you get to be professor of neurology by making wild guesses. Also he said that in his experience lot of people come in because others have noticed the symptoms rather than the person him/herself.

Once again, I sincerely apologise if someone is offended by my questions. Under no circumstances is it my aim to further anyone's feelings struggling with ALS.

I hope everyone has fine easter with their loved ones.

 

[Andy Cap]

I'll try and make a donation later. The stuff I've read here have been the most helpful stuff I've read on the Internet. I mean the stuff on sticky topic are the ones consistent with what my neurologist tells me about the disease. Most of the other stuff, especially on my native language, are way too casual about what to seek and when different symptoms occur.

I also think this is fantastic site for anyone going through the disease. Keep up thegreat work people.

 

[Andy Cap]

Sent my neurologist an email about the twitching in my tongue (before I originally posted here). He replied to my me FROM HIS HOLIDAYS and said pretty much the same as what I read here. I also asked about ENMG but he saw no point in doing it since he still feels nothing in my symptoms point towards ALS.

I just have to say that there are some truly amazing people in this world. I always go out of my way to help people in my own line of work but rarely get anything back. I feel like I'vebhit the jackpot with this neurologist.