Patients Like Me

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.


Filed under fellowship, NaBloPoMo 2013, spoons, Voiceover

5 Responses to Patients Like Me

  1. Grraaa. Why is it that most doctors hate it when we do our own research? Admittedly, some people go all nuts and make their job harder…but isn’t it better to understand your own symptoms/find your own solutions than wait for the doc to figure it out? Friggin hell.

    MS hug sounds so warm and fuzzy…too bad it’s not. Yikes.. Not being able to get a full breath of air is scary stuff. I went through that almost 2 years ago…just…eek. I still don’t know what caused mine, but holy hell that was scary.
    I hope you find awesome people whose brains you can pick.
    Carin recently posted..Ciao, BellaMy Profile

  2. Ro

    Ya know, maybe I gave the dude too much credit haha. Maybe he was just trying to keep me from learning too much so I wouldn’t become difficult. I forgot you experienced the breathing thing. My friend Georgie did too, for her it was anxiety so at first I thought that’s what it was for me but the more I learned about anxiety attacks, it didn’t seem right so I took to Google and yeah.

    I’m loving PLM but as usual, it’s not great for accessibility. Just once I’d like to become a member of a site that’s already nice and accessible haha! Keep dreaming, right? One of the members told me to email support and send a post I wrote to them. Members are asking how I do the internet so it came out that the site is clunky. So maybe I can help and others will benefit.
    Ro recently posted..Patients Like MeMy Profile

  3. Forums, sadly, are usually the worst for accessibility. Blaaa.
    Carin recently posted..This Is Not A Robbery. Please Kindly Accept My Shoes And This RadioMy Profile

  4. Ro

    Wehen I first got my Mac, I went back to this forum I used to be very active on. It was cluttered sure, but it was much more user friendly. It remembered which posts I had read so say there were 4 pages, when I went back it took me to the first unread post. It even told Voiceover where to focus. Looking back I see how awesome that was haha.

    And Carin you should see this PLM forum. At the top of every single post it has your name, and then my “stats” for lack of a better word. It lists the things I entered about my MS, how my walking is etc, so it’s like walking: moderate, vision: sever. There’s like 6 or 8 of those you have to arrow through because unfortunately there’s no heading or anything to mark the beginning of the post.

    And writing a post? Ok this might be different with Jaws. There’s two options for writing. You can do the plain text which I was like ok that’s me right? Well VO can’t find the area to write the post. It finds the subject line but not the post part.

    Ok so there’s the fancy editor thing. Can’t find where to type there either but there’s a “paste from Word” button. This should read “paste from anything you can type in” haha. So I can do it that way but it always takes a few tries. Wtf? So I have to do that to post and to reply. Paste from my text editor, click “insert” and then post the post or reply. Can we say tedious? But I’m grateful for the place, I really am.
    Ro recently posted..May have been my last crabsMy Profile

  5. Gack. That sounds positively horrible. I’m glad at least the info is good.
    Carin recently posted..Did He Ask For It Back?My Profile

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