Have you ever wondered......?

Good evening everyone hope you are as well as can be.

I was dxd in 2008 aged 52, I have since realised that the strange things that happened to me over the previous 20 years the way I muddled my words, the dizziness and accidents on the way to the loo, the reason I could no longer wear high heels, and the reason I found it so hard to concentrate when driving, the way that the world looked hazy and misty at times and the reason I could never find the right words when I wanted them; in fact the strange weird happenings which I thought were a part of my eccentricity, were all related to MS. Have you ever wondered how many innocents there are out there who have no idea that they have this disease, frightening isn’t it!


Hi Wendy,

I don’t really dwell on all those who may have it, but not yet know. In some ways I think it’s good not to know everything that will happen to us. I don’t think I would have liked to know earlier than I did, as I think it would have blighted what turned out to be many relatively well years.

But I do get what you’re saying about the history going back much farther than the diagnosis. I think this is really common.

I can remember having a strange episode - 10 years ago? 20? when my neck wouldn’t support the weight of my head. I remember travelling home on the bus - from town, I think - and having a job to stop my head lolling forward onto my chest. My neck muscles were so tired - I was having to prop up my head with one hand! I remember being like this for about a couple of days. There was no pain, and it cleared up by itself, so I never went to the doctor’s. Thought I’d just pulled a muscle.

Then there were the times I got a completely dead arm during the night, and just thought I’d slept awkwardly. Woke up to find the arm completely useless, and a dead weight. When I tried to move, the arm flailed about uselessly, bashing into things and knocking them over! Because it wore off relatively fast once I was up and about, again, I never thought of going to the doctor’s.

Then the same with a leg. I remember having a really bad cramp, and not being able to stand, let alone go upstairs. I remember it was cold, and I was on the floor of the living room. I hadn’t fallen, but had sat down when the pain was so bad. I was worried I may be spending the night on the floor, and it crossed my mind that I might need to call an ambulance. But at the same time, I knew it was “only” cramp, and had never heard of anyone calling an ambulance for cramp, and thought it would be ridiculous. So I just sat on the floor and waited for it to pass - which it did, eventually. But nowadays, severe cramps, during which I can’t walk are not uncommon. They hardly ever interefere with daily life, fortunately - I’ve never had one in public. It tends to be late at night, when I’m alone.

Loads of other stuff. Shoes have been a problem for years. I actually blamed quality of the shoes going downhill, moaning that: “You can never get a comfy pair these days!” Never suspecting that my health was deteriorating, not the standard of shoes.



Hi Wendy, yes I guess there will be a lot of people out there with ms who do not know and also some who suspect they have ms and do not want to know. I have been both of these. As they say ignorance is bliss! For me I went 6 years from first symptom to diagnosis suspecting there was something wrong to thinking I was totally paranoid, to ignoring my symptoms and not wanting to know, until I had nowhere else to go but to be diagnosed! I was a psychology student so perhaps I had a better understanding and certainly better access to information in text books than some other people might have. I knew for a long time before diagnosis what I likely had even if no one believed me. Being diagnosed was a relieve, but I was a naive 19 year old when I had my first symptom. But looking back I probably had other unexplained things before that. I identify with shoes and high heels. I was always on the clumsy side too, was this ms? Cheryl:)


I’ve had symptoms since I was 12 - all my life I’ve been particularly clumsy too, I was one of those people who could not walk across a smooth, flat surface without finding something to trip on (even more so now sadly). After years of asking about MS, I was eventually diagnosed aged 29 and when I said to the neuro that I’d had symptoms since I was 12, he dismissed that and said “oh, it’s very rare in children”. I could have slapped him, but I didn’t, cos I’m not like that. I think that there are probably lots of people out there with undiagnosed conditions, not just MS, it’s just the way of it.

Definitely miss the high heels, and may be becoming a little obsessed with footwear - for my birthday last week I got a tshirt with the legend It’s All About The Shoes printed on it. I hate always wearing flat shoes!

Luisa x

Absoultely recognise what you’re saying, the many times I made excuses and never went to see the doctor; after all I always got better then!



So they tell me Cheryl, although I know lots of people who are clumsy and don’t have MS. My dogs would have something to say as can’t tell you how many times my poor Jack Russell ran away (her claws running on the spot) as mum dropped knives, forks, dishes and always my favourite cups. She always managed to avoid falling objects; thank goodness). I had no idea I had MS but remember thinking at times that “there must be something wrong with me”. I am very glad I didn’t know but often pass schools and wonder how many carefree teenagers will have MS. A depressing thought i know and another reason we need a cure and hopefully some way of preventing this b… disease.



I am pretty certain I have had symptoms since I was about 11 years old, but even before then (from about 6 or 7) I complained regularly of my eyes going blurred…everyone always put down my symptoms to attention seeking as my brother was ill with a heart condition.
When I was a teenager I had what I now consider to be a first relapse…I was told I was being lazy and to snap out of it.
When I ended up in hospital at 20years old unable to move my legs people started to believe me! It only took another 10 years to be diagnosed with MS!

Since being a teenager I have always been clumsy,tired and had to wear boots to walk without stumbling!
I do wonder if my life so far would have been better if I had known (and not treated like a lazy hypocondriac!) or if ignorance is bliss!

Isobel x

Hi Wendy, i expect there are quite a few,when i was diagnosed it was like the missing piece of the jigsaw, everything fell into place when i got my diagnosis, i thought so thats what was wrong all those years, i knew there was something wrong with me,and i knew i wasnt going to get any better,whatever it was,i always felt different to the rest of my family and friends,sort of alone and still do,my diagnosis came as a relief in a way,at least i knew i wasnt going mad.

I feel sorry for people in limbo,its not a nice place to be.

jaki xx

Well I have to admit I have never seen anybody with MS to know how other people are, just reading these forums and either matching symptoms or making a mental note of what I may have to look forward to in the future.

When I look back I can see a period for a good 7 years before I was finally diagnosed (Dec 2011) were I was definitely not right physicaly. If I look back further, I could make a case for some incidents and say “that’s why” but honestly I think it’s easily possible those incidents were entirely unrelated and I’m just blaming all of lifes troubles on it.

So sorry for you Isobel, I was a lazy good for nothing teenager according to parents. So know how awful that must have been for you. Whilst I’m very pleased I didn’t know as I was able to live a normal life until 5 years ago; it has explained so much that has happened to me over the years.



It’s good if you can laugh about it Luisa. There’s more evidence showing that children do have it now.