I just wanted to share my experiences up until this point today…
I am female, 36 years old and started experiencing symptoms 3 years ago. I started training for a 10 mile running race, first on spin bikes and at the gym. My first symptom was right leg weakness when trying to cycle, my foot kept falling out the footstraps and I lost ability to pick it up, I wasn’t overly worried as I could strap my feet in tighter to resolve the problem.
As time went on I noticed my quad muscles on my left leg were bigger than those on the right. I was told by a personal trainer that it was normal to have some muscles bigger than their matching ones. Again I put it down to natural muscle variation.
Then I joined a running club, this was when I got scared. I was one of the faster runners in the group, but I’d do one lap of the track and my right leg would drag, my foot turn in and I would have to pull off before I fell over. I thought trapped nerve so immediately went to see an osteopath, she told me the problem was between my shoulders and advised seeing a GP.
I went to the GP, explained my symptoms and was sent to see firstly a physiotherapist after several appointments they suspected ‘compartment syndrome’ so I then had an emergency appointment to have a doppler scan done on the veins in my legs. After a chat with the consultant who did the doppler scan, he referred me to the neurologist, that was 2 and a half years ago.
The neurologist examined me and diagnosed mild spasticity and dystonia of the right leg. He then sent me to have an MRI, various blood tests, lumbar puncture and Visual Evoked Response test. The intial MRI was a little blurred but he showed me where I had a lesion on the spinal cord in the T part of the spine. The lumbar puncture CSF came back positive. VER normal and blood tests all fine except low on B12.
I was offered 1000mg of steroids per day for three days to try and hasten the repair of the lesion. The following 6/7 weeks was my clumsiest period to date, I cannot count how many times I fell over, spraining both my wrists. My symptoms have never full subsided, the steroids did little if anything to improve my experiences. It did completely clear up my psoriasis though, I had not seen normal skin on my kneecaps since I was about 17!
Then it was just a waiting game, MS had been mentioned very casually at this point during appointments, but it felt like I had been tested for everything, answers were not difinitive. Limbo.
Over the time since my first symptoms showed, I have various spasms, inexplicable muscle pains in my leg and back. Causing various degree of discomfort day by day. I have realised over time I cannot have hot baths, work in the sun too long or exert myself too much, the heat brings on motability issues and fatigue.
February 2015 I was typing on the computer and my right arm began having weird tingling and numb sensations. I had a panic attack as this developed into not being able to flex my fingers. In my panic I had a cold shower as I thought I must be too hot (even though I was not). I went back to the neurologist who quickly ordered an MRI scan for me.
My second MRI scan was clear and showed a second site of a lesion or plaque. From this point on I kind of knew what my diagnosis would likely be MS. Today I finally got that diagnosis, I feel relieved, I can associate the odd pains, twitches etc that I have been experiencing to something.
I am also scared of what the future holds, everything in my life is just slotting nicely into place (even though sport and fitness no longer factors in my life, my first real shattering lifestyle change) Now my partner and I have the very real prospect that my MS has to be factored into everything.
I had been making jokes (my coping mechanism) about what kind of wheelchair I will aspire to in a decade if I get diagnosed, all of a sudden its very real.
I am being monitored for the next five years, during that time I will get the diagnosis of what form of MS it is I am dealing with.
Anybody have any advice on how to tell your elderly parents without them keeling over with worry?