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
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.