MS, prickling sensations, treatments: my battle to walk again
Jan 15, 2020
Turtelle is a Carenity member living with Multiple Sclerosis. She agreed to tell us about her journey to diagnosis and her fight to keep walking despite her condition.
"Hello, I'm 53 years old and I've been reading your patient interviews for a few months now, more specifically since I was diagnosed with multiple sclerosis back in January. I hope my story can give hope to those who find themselves confronting this disease unexpectedly, even though I know everyone's experience is different.
The initial symptoms
For several years, I experienced symptoms that I never got checked: my left leg dragged behind a little after nine or ten miles of hiking (it made me walk like a robot), a few incidences of incontinence and the need to get up often at night, a feeling of pins and needles in my feet when I was tired at the end of the day and in my left wrist as well...Anyway, nothing too worrisome or painful and I thought it was just part of getting older or passing fatigue.
In mid-December, the prickling sensations got worse and my physician discovered an abnormal reaction when he administered a Babinski test (test that reveals nerve damage by testing reflexes; when the sole of the foot is stimulated and the big toe flares out, the reflex is abnormal as it normally curls back in, Ed.). I had my first MRI brain scan on the 8th of December: you have a few "spots" they told me, but nothing to worry about at my age. The prickling sensations got worse in my left leg which was dragging even more than before. I made an appointment in mid-January for an MRI scan of my spine. By the end of September, I was using a cane, and I went to A&E on the 6th of January and came back with a prescription for pregabalin...finally on the 10th of January, I fell down three times in a 30 minute period.
After the diagnosis, physical therapy
The ambulance picked me up and I had an emergency MRI scan which found swelling in my spinal cord, resulting in emergency hospitalization: I couldn't get up or stand. A spinal tap confirmed it: multiple sclerosis and I was but on a heavy treatment with 7 pills a day.
I was able to get up after about a week and I left the neurology unit on the 21st of January, only able to walk a few feet using crutches. I was prescribed Aubagio, and I had so many questions: everything I found on the internet about MS diagnosed after 50 years wasn't very optimistic.
I was lucky to get accepted into a physical therapy program, at the day hospital for 3 half-days per week. By mid-March, I could walk a little more than a mile, even if my left foot was always dragging behind me by the time I got home. I also passed a medical exam at the end of February which authorized me to start driving again. Since I work for myself, I went back to work in mid-March, on a part-time basis, but with trips all around the country. Working part-time allowed me to keep going to the gym and to see my physical therapist (she's great: she not only helped me regain muscle strength but also my balance and spatial awareness).
My osteopath (who's also great, she's a friend of my physical therapist) has been giving me deep massage sessions using a Cellu M6 LPG and pressotherapy since this summer with the frequency depending on how much I travel for work. I've also been doing acupuncture since mid-March: it's less noticeable now, but the prickling sensations get fainter with every session. I don't know how much of it is physical therapy, walking, the Aubagio, the deep massage, the acupuncture, the vitamins (omega 3s and 6s, muscle relaxers, magnesium citrate and Assonal for about 15 days now), but one thing is sure: the results are clear and the distance I can walk is slowly but surely growing, and the prickling sensation is getting fainter.
Staying optimistic despite MS
Today I can walk about 6 miles if I take a 10-15 break after about 4 miles. I sometimes forget about the prickling sensation which has grown fainter anyway, and Aubagio is working well for me (Even if my transaminase levels have got slightly higher). I was even able to go on a marvellous holiday to Iceland this summer with a small group. I went on all of the hikes (up to 10 miles a day), but I did have to avoid the rocky fields of dried lava.
I know I have a sword of Damocles hanging over my head: the risk of relapse even if I'm on Aubagio and from there progressive MS. But I'm grateful today for everything that I can do and I never imagined I'd get this far at the beginning of this year. I guess I've come to the conclusion that it's possible to live with MS, even if it was diagnosed 55 years too late. I know every case of MS is unique, but this illness is not a death sentence! I hope my story can help even just one person today who finds themselves in the same situation I was in January and encourage them to keep up the fight against MS."
A big thanks you to Turtelle for sharing her story! What about you, do you see a physical therapist or osteopath to control your MS symptoms?