Monday, September 8, 2008

My MS story.

I had been thinking that no one needs to hear my personal story because there are so many out there to read. Then I reconsidered because I really dig reading everyone else's story of how they were diagnosed, and maybe someone would like to hear about my adventure as well. So here goes:

In November of '05 I was in school for radiology. I was also working per diem in nursing at the hospital where I still work. I was also raising two small children. For the above reasons I didn't even consider that the fatigue I was noticing could be explained by anything other than my chaotic schedule.

I was getting dressed one morning and noticed that I had a "bruise" or something on my ribs beneath my right breast. I searched the area and didn't find any discoloration, but noticed a patch of strange sensation roughly 2 by 3" across. Now, I've always been somewhat clumsy. Even during times of my life that I was involved in soccer and hockey I noticed I had little coordination left once I left the field/ice. I often tripped over my own feet and cut corners too closely, causing me to swipe a hip or shoulder into a doorjamb or countertop. I thought the sensation on my ribs was odd but not enough to give it much thought. Until it spread. A week later I realized not only had it not gone away, but it had spread down to my right hip and all the way to the midline of my body front and back. The whole right half of my trunk felt thick and numb and I started to get concerned. At this point my husband (boyfriend then) started to freak and called his best friend's mom who is a nurse (my own credentials are never good enough for him). She referred me to her chiropractor who specialises in nerve damage and spine traumas. He was very thorough. He examined me for over an hour and got the most detailed medical history from me I have ever given. At the end of it he said,

"The good news is your spine is in amazing shape for someone who has abused it so thoroughly. The bad news is I can't do anything for your symptoms. You need to see a neurologist. I think you have MS."

Over the next 4 weeks, the numbness spread all the way down my right leg. It seemed to only penetrate the skin and I could move my leg reasonably well, but I started having trouble being able to tell where my foot was at when I put it down on the floor. The leg got weaker and weaker and by 6 weeks in I was dragging it around for at least part of the day.

At this point you've got to be wondering why I hadn't sought conventional medical attention. At the time I was uninsured, and a single mother. Even with the "employee discount" I could get in the ER I new I couldn't afford to go. I was in the middle of a clinical rotation (on site education where you practice medicine under people with licenses) and I also couldn't afford to miss even one day, according to my militant professors anyway. The people I was working with eventually gave me an ultimatum and said, "Call your professor and go to the ER or find another clinic to study in!" They are an old school diagnostic center with old school equipment. Most radiological images are produced digitally these days, but this place was still processing film. My whole right side was black and blue from ramming into things in their dark room. You might think numbness is no big deal until your working half your day in the dark.

Given my previous medical experience (6 years in nursing) and education I knew going into the ER I'd have a CT of my head with contrast and that they'd be look for a tumor. They also drew blood and asked if I might have had a traumatic spinal injury that I had somehow forgotten. (ER physician's are truly the most retarded and infuriating of their species.) The CT was negative and they referred me to a neurologist. When I called for an appointment and told them I was uninsured the receptionist transferred me to the office manager. Surprinsingly, she was very understanding and said the doc would be happy to see me and at a discount even! She also called in afavor to get me break on the cost of my first set of MRIs. They scanned my head, neck and thoracic spine, and I went back to the nuero. Knowing I was in school, he pulled up the films in his office and showed me a lesion in my spinal cord around the T6-T7 vertebra. At this point the numbness had started to creep up my left leg and he explained that the lesion had only just barely poked into the left side of my spinal cord. This was also around when my sypmtoms started to unravel in the opposite way that they had spread. The doctor told me that was because the lesion was repairing itself from the least injured part first. Over another 4 weeks the numbness went away from the left foot, then right foot, and retreated up my right side slowly back to the point of origin over my right ribs. The doctor decided to diagnose me with transverse myelitis, but not-so-subtley hinted that I might have MS but didn't want to saddle me with that diagnosis before I finished school, got a job, and became insured. Very savvy, my doc. He told me to come back if I had new symptoms, or when I got insurance and we would do further testing.

Flash forward 6 months or so. I finshed school. I passed my boards with a effing 96! I was offerred a full-time job with benefits at the hospital. I worked another 6 months at my new position with no new symptoms, but had another "just in case" MRI in December '06. The plaque on the old lesion was there, but nothing new appeared. I had worked hard in the gym and at yoga to regain the strength in my right leg. I had some twitches and muscle spasms in both legs still, but was assured that these were caused my that first lesion. In January '07 I woke up one day with a wretched headache. As a migraine sufferer my whole life I didn't think much of it. I had that headache every day for four months though. I went back to the neurologist and he sent me to surf the MRI tube again. Looking at the films I knew that the axe had finally fallen. There were 5 obvious lesions in my brain. I looked the scan over with the neuroradiologist at work and he confirmed my suspicions. He seemed actually frightened to give me the bad news so I tried to make him feel better by saying I had known it was coming. I had a lumbar puncture under fluoroscopy (yes, in my own department at work again thanks to my insurance), and it came back positive for o-bands.

(Side note: the doctor that performed the lumbar puncture was one I work with every day. He is quite skilled, but not known for being particularly sweet or compassionate . When I told him I was being tested for MS he was shocked. He was the first person to say, "But you look so good!" To this day, he regularly follows up with me and seems genuinely concerned. When I told him the CSF was positive he said, " Well that's just not f*cking fair." I love him.)

I have been on Avonex now for over a year with out a relapse or any significant new symptoms. My husband I take turns poking me with the needle, and the side-effects are much decreased. The first 6 months I had a full-blown flu for 24 hours post injection. Now, I'm usually just very tired and a little achy on Sundays when I inject. Except yesterday I felt like crap because I had severely over done it at work on Saturday. I will eventually have to admit that I should not work 10 hour shifts in the ER CT scanner by myself. Saturday I hauled 26 patients from their stretchers to the scan table and back all by me onsies. Sunday I felt like I'd been hit by a train.

My comprehensive list of symptoms is relatively short thus far:

Fatigue (duh)
Muscle spams, twitches, and general fidgety-ness in both legs
Random itchiness and cold water drop sensations
Balance impairment (Mild for now but getting worse. I'm gona eat shit soon I know.)
Sometimes I feel cognitively impaired, sometimes I don't.


Anne said...

Hi Punkrockfairy:

Everyone needs to tell their story no matter how many stories are out there or how they compare to you.

MS is individual to each person; no two suffer alike. We may all have similar symptoms but I will never know how bad your headaches are and you will never know how bad my balance issues are - we are all individual to the symptoms.

Welcome to the MS community and I hope you can find support, friendship and laughter here with us.

There are over 120 MSers blogging right now (actively), so as you visit each one you will meet others who leave comments. Add them to your daily reading if you can and your blogroll will grow by leaps and bounds.

BRAINCHEESE has the most comprehensive list- she hates when I tell everyone that because it pressures her to keep it up to date!! LOL

But it is true - she is very diligent in keeping up with the list. So hit her up so you can get around to meeting all of us.

Take care,


Hi Punkrockfairy,

I'll just second Anne's welcome. You are certainly not alone within this community.

I'd also like to suggest that you could check this list of MS bloggers. I try to keep it updates as well.