I’m looking for an answer to what I believe is the unanswerable! I was diagnosed with RRMS 12 years ago but I’m very suspicious that my first symptoms began way before then. As a teenager I had lots of problems with my left knee. I saw orthopaedic surgeons, physiotherapists etc. but was never given a definitive answer as to what the problem was. I remember waking up one morning when I was in my early 20s and, as I got out of bed, my legs just collapsed. A few years later, I went to see a physio (again) who commented ‘you don’t walk properly’ and organised some orthotics for my shoes. Again fast forward a few years, after seeing an orthopaedic surgeon (again), I decided to see a private physiotherapist who after looking at my feet for some reason got me referred to neurology. It was here that MS was first mentioned to me. The neurologist at first said that my weak knee/walking difficulty might be an isolated episode but it happened again a few weeks later. I was then diagnosed with MS.
I know I’ll never really know the answer, but I’m sort of convinced my MS dates back way before my official diagnosis. Has anyone else had a similar experience?
Hi Janet
I was diagnosed in 1990 just before my 50th birthday.
I felt quite well, and felt vindicated that I wasn’t always drunk when I stumbled or staggered, although I did drink a lot.
however the random strangeness of MS made me remember all the random strange ailments I had in my teens.
I woke up one morning when I was 12 and my legs gave way.
I shuffled to the bathroom on my bum.
Mum heard the difference, got up and was obviously concerned.
2 hours later I could stand and walk.
I came out in awful bruises on me legs although I hadn’t injured them.
At 16 I remember another very strange thing, can’t remember exactly what but the GP was worried that it was glandular fever.
then Bell’s Palsy soon after.
really weird that it was possibly MS.
My legs have always appeared to be a strange shape to me. They are long and thin, which is OK but I am slightly knock kneed.
wow you have really got me thinking!
we must have been diagnosed about the same time.
Carole x
Hi Carole,
This is uncanny. I too had suspected (but unconfirmed) glandular fever in my teens and then, in the months leading up to my diagnosis, I kept tripping up. I never actually fell over, just tripping up like I was dragging my feet as I walked. By this time, I was never making full recovery from these ‘episodes’. Like you, I had these seemingly unrelated ailments that were never confirmed and were just left as a mystery.
Best wishes,
Janet
Hi Janet, why do I ‘suddenly’ think of that song by Meatloaf… ‘You Took The Words Right Out Of My Mouth’… I am 57 now but when I was 11 I had, what I now know was my first, for as far as I remember, ‘attack’… Doctor called late evening (a ‘weekend one’…) but could not really tell what the problem was, and I was OK the next morning… Went to Secondary School, had a good start, but realized that I needed a lot lot of effort to remember things, and I was also very tired all the time. Soon my ‘school career’ suffered, and I left school due to ‘ill health’, at the time ‘officially’ mental ill health, and started working earlier than ‘planned’. I knew all the time that I wasn’t ‘mentally ill’ but just could not get a grip on life for whatever unknown reason! Then a relationship stranded (thank god in hindsight!!), met up with a wonderful english lady, emigrated to the UK (in 1995) and got married…, and we still are! (bless her…:). Throughout time I have still had, as I now understand it and only occasionally, ‘attacks’, and I finally had a diagnosis of RRMS in 2007 (it’s now officially PPMS) after loosing control over my legs after a jogging session… Until then I have always thought that my bad habits like smoking and stress were to blame (as my daughter has severe learning difficulties…). BTW, I (still unbelievably…) quit smoking in 2007 as I felt ever so guilty when leaving my daughter on her own with her younger brother at some point, me smoking away outside… Bla bla bla bla… (can you tell I am now writing a sort of book consisting of diary entries…)…
Janet, you know your own body best, and do not let anyone tell you that it was/is all in your head! Like me, write things down, it helps! (of the present as well as memories from the past). Take care!, regards Jos.
Hi Jos,
Your reply brought tears to my eyes as it brought back my situation as a ‘difficult’ teenager. I was sent to a child psychiatrist when I was 14 and ended up seeing her and a social worker until I was 17. I didn’t finish school either (anxiety/ too tired to get up in the morning?) and was given home tutors instead. At the time, I was treated with diazepam which just turned me into a complete zombie! I’ve never really spoken about this before as I just thought it was a very dark time when I was ‘mentally ill’. It was years later that I got my act together, went to college, then university at the age of 23, but without a doubt it took me far longer to get to this stage.
Hearing from others who’ve had such similar experiences is extremely helpful. Thank you so much for sharing your story.
Best wishes,
Janet xx
Janet
I was thinking that we were MS twins,
Josfromglos
we must be MS triplets!
Take care my MS siblings. xxx
Hi Carole & Jos,
I’m so glad I started this post. For years I’ve been thinking I must be the only one to have such a strange list of random ailments. We all know MS is a slippery customer that manifests in many different ways. The one thing I’ve noticed in my experience is how over the years I’ve had these ‘isolated’ episodes, yet never been offered a definitive diagnosis of what was wrong.
I will probably never know the answer to my original question: Where did it all begin? but I definitely don’t feel alone with it now.
Many thanks to you both,
Janet xx
Hi, it is extremely possible and highly likely that many people have had MS for years, before they get their diagnosis.
In my case, it was 22 years!
MS is notoriously difficult to diagnose for some.
Boudsx
Bless you Janet, what a warm hearted reply! Isn’t it good to talk! So you DID go to university etc etc…, I never did, and it still bothers me in some way, but on the other hand, I met this wonderful lady which makes up for everything! I admire you for going to university years later, well done to you! I sincerely hope you are doing OK at the moment…, have you ever thought about writing down your experiences?
You know what, I was sent to hospital too (when I was still in Holland) because of ‘mental issues’, but once I was there I realised that there was nothing wrong with me mentally wise! Yes, that certainly was a dark period for me too, not knowing what the bloody hell was wrong with me!!I I knew I wasn’t ‘mental’ but then, what the bloody hell is it then?, that tiredness, that not being able to concentrate, that smoking and drinking too much at the time (although never in an alcoholic way thank god for that), my school career that went bust…, I just could not get a grip on one and another… I was then blessed with meeting my british wife on Crete in 1994, I emigrated at the age of 32 to the UK, and here I am! It was only in the UK by the way that I started to have physical issues too, and I was finally (officially) diagnosed at the age of around 44 (2007), one and another of course delayed by ‘the move’ to the UK in 1995…
Bla bla bla, sorry Janet! You see, you’re not on your own, life can be sh*t at times (excusez le mot…), but thank God it also had some silver linings in my case…, I hope that you can say the same?.. Take care, even more difficult under these day’s circumstances, regards Jos.