Going from limb onset to bulbar als worrry

[Becazican]

Well it started about 16 months ago feet(both )felt strange , dr sends me to neurologist diagnoses me with neuropathy even though i had normal ncs, start twitching in late April, another emg diagnose sensimotor polyneurathy normal ncv. Aug have another emg , no sign of neuropathy says its coming from my back with chronic neurogenic stuff, no acute. Now i start worrying about bulbar because i have constant mucus stuck in my throat, oct emg same results, dec had a modified barium swallowing test comes out normal, also have an emg comes out the same way accept 1 fasiculation found. Also had mri showing bilateral moderate to severe stenosis in lumbar area, had laminectomy and still having problems with legs shooting electrical pain and whenever i touch my legs i can feel the tingling at the bottom of my feet, yes i have stoop low enough to post on the Alf forum, cant seem to get out of this rabbit hole, because of the constant drainage and clearing throat i think its bulbar, been to ent and gastro, ent says no infection but sinusitis in bilateral maximally sinuses. Gp say that can cause it but ent says its begnign .the twitches have mostly gone away, i have no weakness and i dont slur words, just very depressed and anxious

[Fishmanpa]

Apparently you have something going on but it's not ALS. The people on the ALS forum were very kind about your posts there.

I can understand how physical symptoms can make you anxious but based on your tests, it's not ALS at all. I hope you get to the bottom of it. Respectfully, please don't trouble those folks again.

I would seriously look into help with your mental health. It's apparent it's taking a toll on you.

Positive thoughts

[MyNameIsTerry]

You've helped calm others down through rationalisation on here several times about ALS. So, I'm thinking that you are feeling very stuck right now and whilst there is a condition in play it might help you greatly to try to work on your mental health because perhaps you will feel stronger at confronting whatever is going on.

What have you done before when things like this happen? Where did you start? It's going to look like a mountain so plan only a few steps that are achievable to pull you along. This can help dig you out of feeling hopeless & lacking in confidence.

[Becazican]

Today was my first day in therapy we shall see if that and a little meds can get me out of it. Wish i never read about mucus and throat clearing being part of bulbar. Teaches me to stay away from dr google

[MyNameIsTerry]

ALS isn't something I'm very familiar with but I am with throat mucus since I've been having trouble with that for about 25+ years now, pretty much daily. My brother has problems too but his stems more from a badly broken nose that was reset and later started collapsing again.

I always assumed it was part of my asthma since the meds can be harsh on the throat. I didn't have anxiety until I hit thirty so it's not just anxiety in my case. Hotter meals make it worse by far.

There are possible benign reasons for the mucus so try not to let your anxiety bias it.

Good luck with the therapy & meds. You're obviously being active in seeking help to get through this which can be the immediate battle with HA so that's worth recognising as in your favour in sorting this back out.

[Becazican]

Thanks mynameisterry, i am trying to keep a sane mind about things. I also think i may be making things worst by concentrating on this one symptom

[BazB44]

see, its things like that, that set people off. "I read that...", or talking about how you read one person say their symptoms were.... . Pretty much any disease or cancer can have any symptom if u think about it. But because health anxiety folks always imagine the worst, they will take it to heart and think the worst. In general, people shouldn't post stuff like that. It just sets some people off.

[NancyW]

My neighbor had bulbar ALS. He lived 4 months. Mucus was not on his list of symptoms.

[MyNameIsTerry]

Thanks mynameisterry, i am trying to keep a sane mind about things. I also think i may be making things worst by concentrating on this one symptom

Yes, I think that's true of us all on here. That's why distraction can be helpful to just remind your body how else it can feel.

It's very hard when all your mind wants to do is think about that thing all day long.

[Becazican]

i keep trying to forget bulbar, the mucus is terrible i clear my throat constantly, now staying on mucinex. no cold, no infection. i have been on prozac almost 2 weeks, i am waiting for it to kick in. my lfeet which started this whole trip down the rabbit hole are still like blocks of wood when i have walked too much the twitching is mainly below my waist , i had a laminectomy jan 2, i don't think it helped. if you touch my legs i can feel it vibrate or parenthesis in my feet. no neuropathy on a ncs. did come up with something that a drug i've been on for years losartan can cause lots of mucus in throat and throat clearing. don't know if i could have a side effect after all this time. i want out of this hell.