Ajay

I don’t have many friends either. Everybody I know I have met through work, school or university. It’s very difficult to make friends. If I go to a bar, unless I make an effort to go and speak to someone, most of the time I will be ignored. There are some people that stare but not many.

I sometimes wonder how I am perceived in their eyes? Do they…[Read more]

Yes please do because my brace is over 15 years old and starting to get weaker and not as supportive. It’s starting to make me depressed as I feel like there’s little hope.

Thank you for the reply. My humidifier only has 3 settings and I have set it to the lowest. When you say that the mist goes up your nose if the humidifier is set to high, what happens? Lately, I’ve been finding that I keep having moisture in my nose and it feels like I have a cold but I don’t. Could the humidifier be causing that?

One of the biggest problems I have using a BiPAP is finding a comfortable mask. I have tried so many masks such as nasal masks but they hurt the bridge of my nose and other masks seem to leak during the night. At the moment I have been using a P10 mask but that as started to cause some soreness around my septum on my nose.

The other issue I have…[Read more]

I had to temporarily stop taking Risdiplam because of my stomach issues. I still have residing side effects from it and after 2 weeks my stomach is still not right. I also tried taking Imodium but that didn’t help. What I would be interested to know is if so many people are having stomach problems with this medication then why is that? Is it…[Read more]

I also dislike certain parts of my body. I tend to not look in the mirror so often below my neck but one day I had someone take a picture of my naked body and I was shocked to see what I saw. I had never seen myself completely naked and I didn’t like what I saw but at the same time it was something new to me and I knew I can’t change it so there…[Read more]

Thank you for all of the replies. I hope the symptoms improve as well and I think I will need to change my diet slightly. I eat a lot of fibre normally to help with going to the toilet but I will need to reduce that considerably whilst taking this medication.

I started taking some protein shakes recently a few months back but only a little bit of…[Read more]