Bulbar?

[Robbin88]

I’ve been twitching for 13 months. Also have stiffness in hands and feet and sometimes all over. Pain in quads and glutes comes and goes and involuntary moving toes that lasted for about 6 months (that is mostly gone).

I have been able to get through all of this with the help of the bfs group and seeing that a lot of people had my same symptoms. Now I’ve been having a pulled muscle/tightness in my neck for about 2 months. For the last 2 weeks I’m having symptoms like swallowing problems globus yes (but I’ve had that many times due to acid reflux and this feels different). Also choking on thin liquids. It doesn’t happen every time I drink water but enough that it’s not normal. My voice goes in and out of hoarseness. I can talk ok but I feel like my tongue is big and I have to kind of take it slow. My mouth/jaw seems off and a little shaky. My tongue has never twitched this whole time but I think it’s twitching now.

I’m at a level 10 freak out at the moment. Tried to make an appointment with my neurologist but can’t get one until June. I had a clean emg in November of arms and legs.

Could bulbar start with twitching all over for a year (no weakness) and then hit me with bulbar?😩. Is it possible the emg didn’t catch it. Anyone else start like this? Thank you for your time!

 

[ShiftKicker]

Past thread here: Help with symptoms

Have you spoken with your gp about an assessment? An emg in November after almost a year of twitching would have shown something if it were an issue with motor nerves. Assuming a neurological cause and waiting for a neuro appt might delay getting the correct help.

 

[Bestfriends14]

Actually, as per your history here, you've had two EMGs and both showed nothing in terms of ALS. So, it looks like you have been pursuing this for well over a year, with two EMGs and clean clinical exams. Therefore, by the tests and exams involved, you do not have ALS, so why do you keep pursing this? There are many, many other illness that you can attribute to your innocuous symptoms. Why are you going after ALS as a diagnosis when you do not show any ALS like symptom onset?

 

[Robbin88]

Ok thank you both so much for your replies. I will see my gp, and will also try to move on. Great advice that I will take.

 

[affected]

Definitely a big no, please see your doctor for help and I wish you the best.

 

[Robbin88]

Thank you @affected. Sorry to bother you guys again. My neuro was able to see me today and as you guys told me he said to go see ent and report back to him. So ent appt is on Thursday. He did a clinical exam and strength was good but I had reduced reflexes in my arms and one reflex was asymmetrical. One was a 2 and other was a 1+. My last clinical I was all 2+ all around. My legs were all a 2+ Last time and this time as
Well but arms are 1+ now. I asked him about it but he brushed it off as unimportant. Isn’t this concerning?? I’m seriously trying to move on but I am unable to shake this.

 

[Bestfriends14]

Please do move on. 1+ or 2+ reflexes have nothing to do with ALS. I hope you get the help you need.

Best of luck to you and take good care.

 

[Robbin88]

Thank you @Bestfriends14 appreciate you responding.

 

[Robbin88]

Hello, I just want to update this as it might be helpful to those in the “could this be als?” Category.

I’ve had twitching and cramps and stiffness for the past 14 months. 2 months ago I developed a raspy voice and some swallowing issues (choking on my saliva). I went to see the neurologist who did a clinical and for the first time in all of this I had asymmetrical diminished reflexes in my arms. (This sent me in a panic)

I asked about the reflexes and the neuro said “they look at the whole picture and one test doesn’t meant much by itself”.

I also saw a different neuro who did tested my reflexes again and they were completely symmetrical and normal. He said if you are tense that can affect the result.

Also had my swallow study today and that also came back completely normal. My voice is still raspy but I think that is just part of bfs. It can affect all your muscles, even your throat.

I am finally ready to accept my bfs diagnosis and move on with a grateful heart. Thank you to those that took the time to reply to me. You are all in my prayers every night.