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Hey Mike, just saw your update from earlier today. So sorry to hear about your diagnosis. I know it can be depressing seeing people’s fast progression here, but there are also a lot of people that have done well. I like to see what they’ve done to slow progression. I’ve also found some good facebook groups that are very supportive and have lots of good info and have lots of positivity. Maybe try there too.
Hi Cmish,

Currently going through a similar process as you. I’m a 28 year old male from australia with clean emgs and a biopsy which shows mild denervation of angular fibre types. Currently awaiting a neuro consult and likely another EMG if that’s what they prescribe.

How’s your situation going?

Cheers,
Mik
Hi Camlngurl, Sorry for the lost of your sister. Wanted to ask you if you have met with success in selling your Tobii unit? Wanted to be sure that you found a new home. Look forward to hearing from you. Thank you, Chris CA
Hi all what is this w weird feeling I keep getting through my body feels like I'm being crushed or squeezed and then the twitches come fast and furious It Feels Like A Rush of chemicals or something I know it sounds strange but that's what happens through my body does anybody else feel the same when it's finished my eyes go all googly and and I get palpitations. Please help
They have changed my diagnosis from PLS to upper motor neuron dominate ALS
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TippiLeigh
I’m sorry to hear that. I’ve read some of your previous posts. I have a PLS diagnosis, but my new neuromuscular neurologist said she can’t rule out ALS yet. I really want to stay PLS for obvious reason. How is your progression?
Hi Eric! Just wanted to reach out and thank you for always being so positive. I’ve had some similar experiences as you on this forum. I’ve got an appointment with a neuromuscular doctor at the UCSF next week (although this first one is going to be a video appointment) and the Stanford clinic is just waiting for me to make my appointment.
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TippiLeigh
I think I’ll feel better once I have a final dx as well. Just so I can focus my energy. Right now I feel like I’m all over the place uncharacteristically emotional. I’m normal extremely mellow.
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TippiLeigh
I have 3 boys too! (21, 19 & 15) but I also have one little girl (6) who has us all wrapped around her finger...especially after all those boys! LOL!
EricInLA
EricInLA
So fun! Our boys are now 20, 17, and 14. Wife wanted a girl but gave up after the third. No dance recitals for us.
Recently ive noticed my throat feels like ive got something stuck in it occasinally, also involuntary swallowing a couple of times when falling asleep and stammering my words occasionally.
Hi sorry to bother you may i ask a few questions as ive been extremely concerned about als. Im 33 Ive read your story and its identical to mine, in january i started with a right eye twitch, which lead to all over my body and face now.
Hi Railroad.
could you explain the muscle aches.
mine are worse when I wake up...stiff limbs and then they ache all day...dull.
The skin feels sore to touch sometimes like a skin burn especially on the arms.
HHi there.
Very sorry to hear about your situation.
I too have widespread atrophy.
How did your follow up go if you don't mind me asking ?
All the best
Mike
Hello, how are you doing man? Are you any better? Did you get a 2nd opinion?
Suliwaks
Suliwaks
My situation is still the same just that the muscle twitching it’s now all over my body.
thank you so so much I highly appreciate.
sorry to ask are you pals/cals!?
Skyitl
Skyitl
I came into this forum to learn more about what is and isnt ALS, i started twitching and i got really scared when i learned of it. I hope to hear good news from you man, i have you on my mind alot and i truely think you're missdiagnosed. I hope you find your answers soon, and im sure they're going to be good ones <3
Suliwaks
Suliwaks
Happy to hear that. Hope you are not scared anymore!? no reason to be
I’ll keep you updated as soon as I get something
and I also truly hope it was misdiagnosed
thank you your kindness and support is truly truly amazing
Hello Tycoon...did you see a doctor.?..I have the same problem with right foot after twitches and muscle aches for 3 months.
my muscles seem sore and ache on both legs and arms.
Hi. I just wanted you to know I've had the same exact twitching as you for 7 years.. And about 2 years ago I had a thumb tremor just like yours, it happened on an off for over a few months, but it hasn't happened in a long time..It's all apart of BFS. Also, the inner sides of my feet have twitched nonstop for at least 7yrs, all the other twitching comes and goes randomly..it's not a big deal..
Hi there! Just following up to see if you were able to see a neurologist? I was diagnosed with Primary Lateral Sclerosis (rare, non-fatal form of ALS). I have tightness in some areas you mentioned. I can walk on my toes, but not on my left heel, which is where my weakness started.
Just wondering if you’ve been able to get in with a neurologist yet? I was diagnosed with Primary Lateral Sclerosis (rare form of ALS) and my first noticeable symptom was restless legs.
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