The porcupines were burrowing under my skin again. At least, that’s what it felt like at 2 a.m. on September 10, 1997… and September 11… and September 12… and… well, you get the picture. It wasn’t a pretty one. Especially when I didn’t know what the heck was wrong with me, so you can add fear of the unknown to it all, which of course made the discomfort worse.
As you may know from the previous Episodes One, Two, Three and Four of my medical saga, it started with seizure-like episodes in 1992. Then there was the tingly arm in early ’97. Then numbness that started in late August ’97, which spread from a small patch on my torso all down my left side to my toes. And now these lovely prickly sensations across my midriff, not to mention pain from anything touching me there: clothing, bed sheets, even water or the light breeze on my balcony produced stabbing pains in my skin.
I had one clue to go on. After the pseudo-seizures in ’92, I’d had an MRI which showed just one lesion. The technician had written “MS?” on the report, which my then-neurologist discounted. This MS-question-mark haunted me for the next several years, and now it was a definite possibility in my mind.
I knew nothing about multiple sclerosis, except that certain celebrities had it and had progressed to wheelchairs. This scared me, but despite my fear – or more likely, because of it – I resolved to learn more about it.
I had plenty of time to do research: all the quiet wee hours of the morning, when I couldn’t sleep due to the pain in my skin. None of the usual analgesics helped. So I made my way to my computer, and logged onto the Net.
Where to start? Back in 1997 I wasn’t very Internet-savvy yet. (Hell, the Internet wasn’t very Internet-savvy yet!) My first attempt to find a lifeline was to enter “multiple sclerosis” in a search engine. Google didn’t exist yet (!) – I think I liked Alta Vista at the time, but certainly any of the top search engines would have yielded the same results. To my amazement, scores of pages listing links to various websites came up! I also found a newsgroup called “alt.support.mult-sclerosis.” I guess it was the word “support” that did it – I was drawn to it immediately, so my first exposure to MS knowledge was this wonderful forum. (Note for users who aren’t familiar with newsgroups – these were hugely popular forums at the time on thousands of different topics, where anyone could join in and find support and like-minded individuals.)
To someone like me, desperate for answers, this group was a godsend. Talk about a whole new world opening up to me! Silently, for weeks I lurked, never posting a message but avidly reading everyone else’s. Never had I dreamed that there was a whole universe of people with MS out there, from countries around the globe, of virtually every age group, with every variation of symptoms imaginable. In those dark ages before Facebook, it was astounding!
Users were so supportive of one another. If a woman wrote that she had a bad day, many other writers would jump in and offer sympathy or suggestions to help her cope. And since these suggestions came from people who had tried them and found they worked, they had credibility and were worth checking out. Often you would read a hearty thank-you from the person who had originally asked for help… and then that person was ready to help others. It was a circle of caring and support, and a wellspring of information. I was thrilled to have stumbled on it.
Finally the day (or more likely, night) came when I got up the nerve to post a question myself. It ran along the lines of “These are my symptoms, what do you think, could this be MS?” I was still seeking an explanation for my physical symptoms, while I waited for a new MRI and an examination with a new neurologist.
I got a slew of replies, both on the public newsgroup and in private emails. Many were the opinions offered, symptoms shared, and words of hope lovingly written to me. I learned a lot and made new friends. Indeed, my sanity was saved during those endless nights of misery and pain.
Supplementing the newsgroup contacts were the many websites I visited. There I found information on the latest treatments and research. (A great starting point: www.mssociety.ca) I could hardly wait for my upcoming appointment with my new doc. By now I was sure I had MS and wanted it confirmed, so I could start getting appropriate treatment for my symptoms.
Meanwhile, I was grateful to the Internet for making the prospect less scary. Coming up: What’s Wrong With Me! The Final Episode!