Does this sound like anyone’s Bulbar ALS story?

[Ginny2011]

Thank you for anyone willing to read my post. I’m a 38 y/o female that started having odd symptoms just over 2 weeks ago. These have developed over the last couple of weeks and it feels as though they’ve gone from from mild to more noticeable.

-awkwardness when I talk, tongue feels stiff and I have a hard time annunciating certain sounds
-difficulty swallowing, food feels as if it won’t go down my throat unless I take a gulp of water. Small amounts of liquid and saliva seem to pool in the back of my throat , throat slightly sore, globes sensation
-fasciculations everywhere - chin, neck, lips, hands, feet, legs, trunk. Like little popping fireworks.
-Hands fumbling, weak, feet feel a little off balanced.
-cramps in neck.
-odd sensation in my mouth/chin/nose. Like pressure or stiffness?
-several urges to have a bowel movement during the day (I’m usually a one and done morning pooper)

I’m pretty aware that you all don’t need another self diagnosing anxious person in this forum, but if anyone reads this and has had a similar experience I’d appreciate any feedback.

I have an appt with a neuro but it’s in a month and I told myself I wasn’t going to post but I’m having a moment of weakness. Thank you for listening. My heart goes out to everyone dealing with this devestating disease.

 

[lgelb]

Doesn't resemble what I know of ALS. It does not manifest anywhere nearly as quickly or the ways you describe. However, your own mind is perfectly capable of amping up any of the above.

I hope you've seen your PCP first, because s/he is probably best equipped to help you with this. If they are not up for it, there are other fish in the sea. Meanwhile, I would look closely at your sleep, hydration, and exercise.

Best,
Laurie

 

[Ginny2011]

Hi Laurie. It was very kind of you for taking the time to respond, thank you for that! I truly understand what you are saying.

I did see my primary and he was concerned enough to refer me. Something in my gut is very worried and but I’m doing my best every day to not overthink things and practice patience. Again, thank you for taking the time to listen and respond. Take care.

 

[Bestfriends14]

Your symptoms don't resemble bulbar ALS in the least. Hopefully your neuro appointment can put your mind at ease about your worries of having ALS. Again, there's no correlation between your issues and how bulbar starts.

Good luck and please report back after your neuro appointment.

 

[SeaGunny]

Greetings Ginny2011.

NOT to help you self diagnose. Your symptoms, from what I understand (and I am not very bright - certainly not anyone authorized to do as much as to apply a bandaid). My PALS has Bulbar ALS. Long before she was diagnosed she has what sounded like a speech "impediment" that us lay people would think someone with a heart attack or stroke victims might have. We had her checked - no signs of any heart disruptions, Then she had reflux and was tested for that, Told to eat and drink less acidic foods and drinks. Then she had other issues and we went around the state to specialists. One even went so far as to say what she was feeling was in her head. After more testing )(lots of that) she was told she may have something along the lines of another ailment. (similar to but not ALS). Then she was informed she was losing her ability to speak and we saw LOTS of doctors on that one.

Don't go looking for the Boggy Man. I truly hope and offer prayers that they can find the source of your problems and cure it. May the doctors put you at ease with a differing diagnosis. God Bless. I miss Mission Bay!

 

[Ginny2011]

Bestfriends14, thank you for taking the time to respond. I sure hope so. I will update the thread when I know anything.

 

[Ginny2011]

SeaGunny, I’m so sorry about your PALS. I can only imagine the devastation it’s caused you. Thank you for sharing what you went through. For myself, I can only hope it’s not the boogeyman, although I grow more and more worried everyday as my symptoms evolve. I’m trying to stay off google and forums, and accept that it will be what it will be.

Hope you can return to mission bay one day! I live inland and don’t make it to the coast as often as I should, but I was just on the bay last weekend. It was beautiful.

 

[Ginny2011]

Neuro evaluation complete and EMG has been scheduled. No clinical weakness but she did note obvious atrophy in my ankle. Currently experiencing…

-Noticeable atrophy in my left outer ankle, top of foot and calf
-heaviness when walking, more pronounced in my left leg and foot
-Fasciculations, mostly in my feet but I also feel them in my legs, neck, lips, throat.
-What appears to be atrophy of my tongue.
-Still having awkward speech and swallowing has become more labored. Hoarse voice.
-neck, jaw and throat feel tight and at times crampy

Among other things. I think these are the most concerning. At this point I’m pretty convinced it is worst case scenario but hoping for a better outcome. It felt like a whirlwind of random symptoms at first but now it has been 5 weeks of progression and the bulk of my symptoms seem to be focused in my left leg and mouth. I know you all can’t be therapists for those of us freaking out but I just feel like I need to talk to someone. Thank you for listening!