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Hi Affected, My mom was diagnosed with Progressive Bulbar Palsy over a year ago. She has had a feeding tube in for a few months now, she lost all speaking abilities pretty much right away. She started uncontrollably grinding her teeth. I read something you wrote about a mouth guard being a bad idea. Do you have any suggestions as to what we could get for her so she doesn't break all of her teeth? Thank you!
affected
affected
Hi, so sorry about your mum. You could ask this on the public forum to get a variety of responses. I don't think I said a mouth guard is a bad idea. I have written before about the very strong gag reflex Chris had, and with his severe swallowing problems, any stimulation to his mouth would cause a sudden rush of saliva, a gag reflex and then choking or aspiration.
That doesn't happen to everyone however, so YMMV.
Hello, I have very similar symptoms with you. Please keep updating after you have some results etc.
L
lifelover
Last night I had like 7-10 "choking" feelings while I was tryna get sleep lying on my back. It could be a spasm in my throat. Lasts 1-3 seconds, no pain.
A
anxi_12
Everything gets worse at night for me, same for you ? Maybe because of reduced oxygen while sleeping
L
lifelover
I was about to write that in my previous comment but the letter limits made me erase it, but yes, that is exactly what I am thinking.
Hi! Have you got any answers? I have fascs, slurred speech especially when nervous, but still all the time but not so bad if i speak to myself for example, pain in jaw, had pain behind eye, little cramp feelings in limbs, but never actually had the cramp, it is just a feeling of a incoming cramp.
Hi Stella! I have similar symptoms, and same MRI, subcortical hyperintesities. Have you got any diagnosis or help to your symptoms?
Andy, your symptoms sound VERY similar to mine. I've been twitching since June 2022. Numbness and pain primarily in my arms, mostly my right arm. 4 clean EMGs to date, and reflex and "clinical" strength is "normal"....yet my symptoms continue to progress day to day...week to week. Curious to hear if there's been any DX for you.
ShiftKicker
ShiftKicker
This user has not signed in over 4 years- you may not receive an answer.
Hi! Did you ever get diagnosis / results what could cause your symptoms? I am facing similar symptoms myself.
Kelly some of your husbands symptoms sounds so much like my husband. Its so hard to watch them slowly waste away and cant do anything to help but just be there for them. Take care reach out to m eif you wver want to just talk
Dimitra,an theleis diavase to story mou.
Vasanizomai 11 xronia kai akoma den exvw diagnosi.
Eimai diathesimos gia opoiadipote voithia.
Petros
D
Dimitra_123
Petro kalispera.
Σε ευχαριστώ που μου έγραψες. Το διάβασα και λυπάμαι πολύ για όσα πέρασες και περνάς. Ομολογώ οι τελευταιοι μήνες είναι φριχτόι, φαντάζομαι πως είναι να το ζεις αυτό για χρόνια. Εγώ είμαι έτσι σχεδόν έξι μήνες και πλεον δεν ξέρω τι να κάνω. Οι γιατροί που με είδαν δεν έχουν ιδέα τι συμβαίνει και μου είπαν να περιμένω. Δεν ξέρω πως γίνεται αυτό. Αν έχεις κάποια πρόταση καλοδεχούμενη
P
PassengerXIII
Καλημέρα…
Αν θέλεις μπορούμε να επικοινωνήσουμε εκτός φόρουμ για να ειναι πιο άμεση η συζήτηση μας.
Ίσως μέσω μεσεντζερ αν έχεις,θα με βρεις ως Petros Sclvc.
Αν δεν έχεις,στειλε εδω και θα βρουμε τον τρόπο.
P
PassengerXIII
Δήμητρα πώς είσαι;
Δεν απάντησες και ανησύχησα.
Hi Hal. We messaged last June..my dad has flail arm. I hope you are doing well and managing. I wanted to ask you if you experience neck stiffness? Dad is having muscle stiffness in neck for a few weeks. It could be related to doing things awkwardly, we just arent too sure. Its not weak, just sore/stiff. No other changes, arms maybe a bit weaker. Take good care.
H
Hal
Hi there … glad to hear your dad is doing fairly well. Yes, I have muscle pain stiffness in neck, but I also hurt my neck years ago playing hockey so I’m not sure where to lay the blame. I do feel that the weakness in my arms and shoulders puts more strain on my neck. All my best, Hal
M
Mon
Hi Hal, I agree. I think weakness in arms & shoulders would strain the neck. I hope you are keeping active & well. Dad is doing fairly good. We renovated a bathroom, a shower vs a tub and lower switches/plugs and lower sink countertop. We saw snow today, he doesnt tolerate the cold weather well, until he warms up certain things become tougher to do. Dad used to play hockey too. Take good care.
H
Hal
Hi Mon … we essentially moved south because the cold weather makes my symptoms significantly worse … and it actually doesn’t even have to be that cold. I also have issues with higher counters etc… many times I eat meals using our living room coffee table rather than our dining table. It’s my understanding that this version of ALS progresses much slower then most other forms. Best, Hal
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