After a four-day kayak trip in north Vancouver Island, August 2016, which also included flights and bus, I came back home and started working. I knew something was not quite right as I developed dizziness which then turned to nausea and vomiting which required hospitalization for five days. CT and MRI read as normal. Was diagnosed with vestibular neuritis and discharged. However wasn’t feeling 100%. A week or so after, I developed the same symptoms, requiring another hospitalization, this time over two weeks. Another CT and MRI. MRI showed demyelination. Was then diagnosed with possible MS. Given four months sick leave, I stayed at my parents’ in Manitoba. (I live in Saskatchewan, Canada.)
While in Manitoba, saw a ENT who prescribed me VRT. Saw a neurologist at MS clinic after reviewing my two MRI, which by the way, the first one wasn’t normal. It also showed signs of demyelination; could not confirm MS as of the location of the lesions. He then diagnosed me of vestibular neuritis and suggested I go back to work, end of January part-time and work up to full-time by end of February. At that time was x-ray tech in cardiac cathlab. Since then, haven’t been able to work full time. Am on a return back to work program.
Once I was back in Saskatchewan, was able to find a physio who specializes in VRT. She diagnosed me with MdDS. When I researched the topic, the signs and symptoms were bang on. I remember when I was on sick leave, felt I was walking on quicksand or on trampoline as described in pamphlet. Was hard to describe the feeling. Had brain fog and still do, but not as much since starting Clonazepam last August. Still have rocking, bobbing, swaying sensation. However these are lessened with Clonazepam. However, when I face triggers, symptoms spike up. I also have a lower level of energy and seem to need more sleep than usual.
Have to pace myself.
Last May, saw the neurologist who I saw when hospitalized. Had another MRI. Still showed demyelination. However no progression. Diagnosed me with clinically isolated syndrome, precursor to MS. Am on MS medication called Rebif to stop the progression of demyelination. Last Fall, another MRI showed no progression.
Since the new year, I have started working in general duty x-ray which has a variety of work to do, and which gives me less motionless and less stillness which were triggers when I was working in cathlab. Stress level is also diminished, which is another trigger in cathlab. I strongly believe I made the wise choice of changing department. I do believe I will be at full time by end of February, instead of April if I would have stayed in cathlab. I am also thankful that I don’t feel like a zombie after my shift as I used to in cathlab.
Exercise-wise, I do yoga four times a week. I try to include three active classes and one stretching. I try to walk on other days. Before all this happened, was hard core exercising and playing several sports.
I also have found some pastimes like paint nights and stained glass class, which I do find relaxing. I don’t feel my symptoms, as I am concentrating.
I try to socialize, however must pace myself and am not guilty in refusing to participate by telling others that it’s too much for me on that particular day. My faith, friends and family are my anchor in all of this. I do pray for remission. However, I take it one day at a time. I do have ups and downs, however, try to focus on the good days.
God bless you all,
Julie Lemoine
Regina, Saskatchewan
Canada
From the Canadian Organization for Rare Disorders
About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. Canada’s Rare Disease Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
1. Improving early detection and prevention,
2. Providing timely, equitable and evidence-informed care,
3. Enhancing community support,
4. Providing sustainable access to promising therapies and
5. Promoting innovative research
Julie has created a group on Facebook to enhance community support and to know fellow rockers from the prairies. She hopes to get together in person to share what we go through and have talks on different topics i.e.: nutrition, exercise, naturopath, pharmaceutical, meditation , etc.
Julie,
I have wrestled with off-balance challenges since I was about 19, however, now at 35 it seems to be getting worse. I went on a merry-go-round a few weeks ago and didn’t feel right for about a week. This past week, I went on a 4-night cruise, returned Thursday morning, and now Friday evening I still feel like I’m rocking on a ship. I’m trying to see what I can do to minimize this foggy, bouncy feeling. Thoughts?
-Phil
I have never actually been diagnosed with MdDS. However 25 years ago I went on a cruise and afterwards could not get over that “rocking motion”. I went to all kinds of doctors and no one could help me. The last dr. I saw said that he didn’t know what was wrong with me but if he were me he would never go on another cruise. After a year the rocking motion left. However, I still have some problems periodically with the rocking motion. I had a tooth extracted in 2010 which caused another episode. It took about 3 months to clear up – thanks to a physical therapist that worked with me and gave me exercises that helped considerably. I found the MdDS on a website several years ago and recognized myself. I am interested in joining your facebook group.
So glad that you found our website, Diane. To join MdDS Friends, our private support group on Facebook, be sure to respond to the admin questions. Members are vetted and answering the questions is part of the joining process. See you there!
Bonne chance Julie –et bon courage -tu es dans mes prières.
Merci pour les prières
Wonderful Julie that you are being a light for others
It is so very difficult when one has a condition that the medical community is not very knowledge about
Keeping you in my thoughts and prayers for relieve with this condition
Hang in thar Babe
Love
Aunt Glenda
Thanks for your support and prayers
Hi Julie,
I just though I should give you a quick reply – as you seem to fall into the slightly mysterious diagnosis area ?
I thought I had MdDS, but it turned out the the nerves that sense where I am in space have been damaged. I got the impression this was peripheral nerve damage, but I’m not sure ?
This sort of made sense for me because when I’m in a car, or swimming, etc the symptoms stop. For me this has been due to Systemic Lupus Erythematosus. (SLE) I’ve also had some demyelenization occur due to a long standing B12 deficiency. I dare say your Doctors know what they are doing, but it might not hurt to have these two things checked out if there’s still some doubt about whats happened.
X
Kerryn, was you movement sensation triggered by boat, plane etc or did it come on spontaneously ? I’m very interested in your story. I exhibit many lupus and Sjögren’s syndrome symptoms but all diagnostics so far are clear.
Wanted to share my journey as part of this rare disease and hope more people will be more familiar with this syndrome and also bring awareness that it does truly exist
Thank you, Julie. Your story here along with your television interview with Radio-Canada, “Deux ans après un voyage en mer, la houle la secoue encore” are helping many.
Merci de partager Julie. Je continue à prier pour toi. Je suis contente que tu progresse si bien! Continue, we’re right behind you!!
Merci de ton support et prières
Thank You Julie for sharing your experience and subsequent course of treatment . Your attitude and Faith are terrific and I do pray you’ll go into remission. I was blessed to be diagnosed at UCLA in 2001 when MdDS was not understood or recognized by many neurologist. I continued to work eight years after being diagnosed with Klonopin in a busy out patient M.R.I. center but the stress and pace finally caught up with me and I left work. It was 17 years ago last month from my diagnosis but you do figure out your triggers and ways to cope.
God Bless you,
Pam kennington