As a recently diagnosed MS patient, I’d say the most common question I get from people besides explaining what the disease does is how I got diagnosed. Getting diagnosed with multiple sclerosis can be quite difficult actually because as I would learn there is no definitive test for it. What it takes is a bunch of tests; doctors need to rule out anything else. Tests I’d only seen previously on episodes of House M.D. were ordered for me. For some people the diagnosis process can take a long time, for me it was fairly quick. I’ll be putting up a fairly thorough account of my diagnosis over a couple of posts starting with this one to give you an idea of what it was like for me. Remember that multiple sclerosis affects everyone different so take these posts for what they are, my story.
On September 17th 2011 I was working supervision and cleanup at a back to school dance. It felt like it had been a long day before I even got to work because I felt unusually sluggish. I loaded up on some caffeine and did what I could to snap out of it. About 2 hours into the dance my left foot fell asleep, I’d been standing around a while so I tried to ignore it and decided to go walk around outside for a bit until it came back. Fifteen minutes of walking around trying to get rid of that dang pins and needles feeling in my foot and it wont go away? I’m thinking what the hell! Now I swear it even seems like my right foot is starting to feel the same way. By the end of the dance both feet were completely asleep. I ignore it and tell myself I need to get more rest and whatever I had planned for the next day is just going to have to wait for me to wake up.
The next morning after plenty of sleep I’m annoyed when the pins and needles have not left my feet. They’re not swollen, they’re not blue, what the heck did I do? I let this go for a few more days before I went to the doctor. Couldn’t get an appointment with my personal physician on such short notice but I didn’t mind I just wanted to figure this out. Doctor 1 ordered some blood tests and told me I should talk to neurology about setting up an MRI the following week. He told me to come back if it got worse. This sounded fine to me so I left, the next day it got worse. My foot issue was now a foot, shin and knee issue; especially the left one. Doctor 1 said come back if it gets worse so I scheduled another appointment. It was now Saturday so my doctor’s office was closed but I got an appointment for another doctor in a nearby open office. Doctor 2 seemed to be an a hurry, 2 minutes of examination and he tells me I should try to use a heating pad. Really Doctor 2? I’ve had this thing for a week it won’t go away in fact its moving up my legs and you suggest a heating pad?! I’m starting to get worried but I go home and decide to just wait to see the blood test results Doctor 1 said I should be getting sometime Monday.
Monday comes and I’m checking for the results online every chance I get. Monday night they become available and as far as I can see they’re all normal so as Doctor 1 had suggested I called neurology to set up an MRI. They gave me a date in late October, about a month away. I questioned this a little but scheduled the appointment. By this time I had gotten so used to my weakening legs I barely noticed it, Wednesday morning I was back on notice.
I am by nature non-confrontational but when I woke up Wednesday with feeling going away from my hips down and parts of my left arm I decided the logical thing to do was to drive to my doctors office and sit in the waiting room until someone paid attention to me. When I got there it was clear they were not interested in hearing what I needed and I was really getting on the receptionist’s last nerve. Didn’t realize this at the time but my doctor’s office doesn’t provide primary care on Wednesdays and was essentially closed when I got there but I wasn’t leaving until I saw my doctor. Frustrated with me the receptionist called for my doctor’s nurse to take me back and do a quick evaluation. After a few minutes of questions she left to talk to my doctor, I couldn’t hear what she said but within a couple of minutes my doctor was in a room with me and told me I needed to be driven to emergency to treat a possible case of Guillain Barre. This was good and bad. Good because even though I had no idea what Guillain Barre was I felt I was going to get an answer and bad because I needed a ride to the emergency room. I drove myself there fueled by fear and perhaps a bit of anger and didn’t stop to realize how dangerous/stupid it was to drive when I couldn’t even feel my feet on the pedals. If I wanted to drive, which at this point I didn’t, the office assigned someone to walk me outside and watch me get into a car to make sure I didn’t. My fiancée left work early to come pick me up and take me to the emergency room. Given the frustration I’d felt that morning I felt like I had accomplished something getting my doctor’s referral to emergency that day. At that point in time I didn’t care if it was Guillain Barre or not I knew I was about to get some real tests done and I “knew” I’d be leaving with an answer.
I was diagnosed back in 2002. I first presented with optic neuritis – a very common first symptom. MS was brought up very fast and from there I got the diagnosis quite quickly. I know I was “lucky”. So many wait SO long for a diagnosis.