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A
Hey! I have been going through the same exact symptoms related to my speech and they drive me absolutely crazy. Would like to know if we could chat about it, perhaps through email or maybe dms on reddit? I have the exact same thing.
ckmm
Hi , I’m just wondering if anyone had Pseudobulbar affect as one of their first symptoms? Thanks for any help .
ShiftKicker
ShiftKicker
Hello and welcome to the forums. You have posted on your own profile page, which will not get the eyes that posting on the forum will. If you'd like to start a thread, please go here: Could This Be ALS? and select "Post Thread" to ask your question.
D
Hey Sultan, I have the same problems on my hand. Are you ok?
ShiftKicker
ShiftKicker
This user has not signed on since 2017-over 6 years ago. They may not see this message.
F
Hi Loulou
My husband David has recently been diagnosed . I saw your post on triumeq and thought I should let you know that we were told by the clinical research team that if we were on the trial David could take TUDCA as long as it didn’t contain Sodium Phenylbutyrate. We are based in Australia and looking for a neurologist who will prescribe off label … can you help?
Many thanks
L
Loulou22
Sorry I just saw this message.
I’m in Melbourne and attend Calvary Bethlehem clinic. My neurologist offered me triumeq.
Could your husbands neuro or GP to write a referral to another neuro in the area, so they can write a script? Or perhaps a colleague they could refer you to?
Also theres a Facebook group called Australia MND Group worth joining, many locals on there with a wealth of knowledge
L
Loulou22
Sorry for lack of detail I can’t post more than 400 characters. Let me know if I can give you any more info
F
Frankie13
Thanks so much for the info … we hoping to get more help with a different neurologist 🤞
H
Hi Sasha, I have a similar shoulder issue to yours, have you had any diagnosis or learned anything since your last post?
H
Hi, have you found a solution or diagnosis to your shoulder issue? I am having a very similar problem.
H
Hi, do you have any news on your should issue? I seem to have a very similar issue and would love to hear about how your case is solved.
H
Hi Elebis, how is your shoulder problem? I am actually having the same issue. Looking forward to hearing if you got a diagnosis.
C
Hi Lyn,

I was reading your most recent post. How did your appt on Friday go? I am writing because I too am fearing ALS and my symptoms started with shaking in my right leg. Worse when I bend over at the hips or am standing still for too long but seems to go away when I start walking. Is this how yours started?
lifelover
Just a heads up if someone is suffering similar symptoms than me. Now its been 2 years since all this started, so I could pretty much now put the worry of ALS away. I am still waiting time for neurologist. I have couple of things to ask him. My tongue and speaking is still impaired. Tip of my tongue is kinda "spasming" without pain, and when it does that, it is really hard to speak consonants.
G
Gopackers
I can’t find your original post! What symptoms did you have ?
lifelover
lifelover
I have twitching - for 2 years. Speech difficulties. Muscles are floppy all around, noticed easiest in face. Cheeks and face have lost muscle, they are thin and floppier, no healthy bulk anymore. Brain fog. Walking is not automatic anymore, i need to think how I walk so my left foot doesnt scratch the ground.
lifelover
lifelover
I startle easy nowadays, if something touches me without me seeing, I jump like I had electric shock. Constant thick stringy mucus in throat, very hard to clear it out.
D
Hello. How is it going?

I have alot of the same problems as you, weakness/pain, but 95% only in my right side... Right foot,leg,arm,hand, and shoulder...

Is there any news for you for the better?
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