wellington

Hi there,i was reading a past thread that lead me to one of yours on the pls forum.
We seemed to have a lot of similar symptoms than the norm...i.e automic symptoms.
How are you doing? do you have a diagnosis yet?
Its good to see your still popping into the forum,any thing i can help you will please don't hesitate to ask.
Wishing you and your family all the best for this newyear.

Wellington, remember not everything is necessarily related to ALS or MSA... check out the Come for Tea thread for a fun thread, along with WHine and Cheese and the Pub.

Hi Filmmaker, thank you for your message. My very first one! My neuro hasn't given my condition a name, but ALS and MSA (Multiple System Atrophy) are in the mix. In honesty he's leaning towards MSA at the moment. It is a movement disorder similar to Parkinson's Disease but much worse - no treatment, no cure and a likely 6-9 year lifespan after diagnosis. I have a range of constitutional symptoms - nausea, erratic heart beat, blood pressure, temperature disregulation (I freeze, even though I live in a subtropical climate), bowel and bladder abnormalities. Anyway .....

I'm so hoping for a diagnosis, and joined this site after my neuro suggested ALS, because going it alone as your mobility decreases is so ... well .... lonely! Without a diagnosis though I still feel a little bit of a fraud.

Filmmaker, I think you have an ALS diagnosis. Am I right? How are you going?

Hi wellinton, just read your doctor said you have a rare neurodegenerative disease, did he tell you which one it is or it doesn't even have a name?