When I was diagnosed with MS in 2006, I was told to see a neurologist after being diagnosed in the hospital. I was assigned a neuro and began seeing him immediately. He told me to stay off the internet because reading about my disease would just scare me. He called his MS patients a glum lot. I vowed not to look up MS on the internet or be glum.
When I went blind in 2008, the neuro was at a loss. He acted like this was so rare, to go permanently blind from MS. He also told me there was no pain with MS. Needless to say I began questioning his advice but I still didn’t go hunting online and I still did not want to be glum.
I don’t remember how I found Patients Like Me in 2009. I must have been doing some sort of search, probably looking for hope that my optic neuritis wasn’t permanent. I was able to sign up on the site but I wasn’t proficient enough with Voiceover to figure out how to post and communicate with the patients like me.
After this last few weeks of some definite MS activity, I’ve craved support from others with the disease. I went back to the site today, reset my password since I couldn’t remember it, and vowed to stay until I’d figured it out. The site is more than just a support community. Patients can track their symptoms and flairs, help with research, even find trials to participate in. The site uses the term “brain fog”! Haha yay!
I managed to post in the forum and trade messages with another woman. I’m among my fellows! Sure, their stories might be scary but their support will be most welcome. I have become glum. I must reverse this.
What prompted this was a search I did last night because I couldn’t seem to get a full breath of air. I was shocked when MS stuff popped up. The MS hug? Here’s one of the pages I found. After reading about it I did some more searching and found another forum thread about it somewhere. Some of the people get it when it’s humid, and we had crazy wet weather here Friday and Saturday. Reading all the posts about this MS hug and also some spastic events in the back, I almost wanted to cry. Thanks to the tips they posted, I was able to get a full breath. I also discovered that my gabapentin eases the hug. Yay!
Avoiding MS on the internet all these years has kept me rather lonely. Oh also a discussion I was having with my friend Ricardo prompted my desire to get active on PLM when I told him that when my MS is doing its thing, my loneliness increases. I’m grateful I was able to figure the site out and I hope I keep visiting there. I think it will be good for me to talk with the patients like me.