New profile posts

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

Hello, followed your story. Were you diagnosed?

Hi Sasha, I have a similar shoulder issue to yours, have you had any diagnosis or learned anything since your last post?

Hi, have you found a solution or diagnosis to your shoulder issue? I am having a very similar problem.

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.

Hi Elebis, how is your shoulder problem? I am actually having the same issue. Looking forward to hearing if you got a diagnosis.

hi did u figure out what was causing this, going through the same thing rn

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?

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.

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?

Hello, how did your emg go?

Hello, how is it going?

how are your symptoms? Did your neurologist get back to you?

Hello were you diagnosed with anything?

I’m a 50 year old male and have been having twitching that started in my calves and now is randomly all over. I recently had an ncs and an emg. My emg came back normal but my ncs came back peroneal nerve neuropathy with no signs of entrapment. I walk with light limp because my top of foot hurts and side of knee. I’m worried about als and that’s all I can think about. Any ideas out there?