Forum

what other people think about our symptoms

Does anyone remember back to when they first became unwell? I remember when I had arm weakness it came on at point of taking steroids. My mum she thought it was a side effect of the steroids. The list of side effects includes weakness.

It just shows if people are not informed what they might think about symptoms. The weakness carried on for many months and it is recovered generally. But when I had my sensory relapse recently it came on for a few hours again and was gone by the morning.

My first obvious symptom was double vision. It coincided with taking anti malarial drugs for a holiday. My GP and eventually an ophthalmologist thought it was a side effect of those, even though I’d had them before without ill effect. We all know different now!

Unfortunately I was my own enemy. For years I ignored the symptoms. I thought my shoulder pain was a result of carrying everything but the kitchen sink in my handbag. And the weakness in the arm a result of the shoulder pain. The extreme fatigue I chalked up to being lazy. The depression to being …depressed. The memory loss to being a symptom of non-ending depression. I can go on and on. The problem with this disease is that the manifestations can be attributed to just about any other affliction. I suppose I should be happy that the optical neuritis occured otherwise I would still be suffering without help…

I thought I was having a stroke!! Was out with family for a meal and suddenly couldn’t swallow. Left arm and leg went numb, and left side of face started tingling.

Went to gp (With hindsight should have been hospital) he did some tests and thought I was having a stroke.

Hospital also told me it was a stroke and I was admitted. After 6 days completey lost the sight in my right eye.

Thinking back for a few weeks before all this my left arm was feeling heavy and vaguely numb.

That was in August 2011, and April 2014 was given a dx of definite ms.

Freckles x

Hi Helebon, I’m glad you’ve come to accept it was NOT the steroids, and this is fairly typical of a relapse - and of MS generally. Mums are often right, but not always. I do remember, long before I was diagnosed (years) I was staying at Mum’s for a business course in London (yeah, treating the place like a hotel, I’m afraid). I had to travel to and from the course on the rush hour tube. This was in about February. One night, I arrived home with the sweat literally pouring off me - running down my back. I showed Mum, and she said: “Oh Tina, there’s something wrong with you!” I snapped, irritably: “Of course not, it’s REALLY hot on there!” (she hasn’t braved a rush-hour tube for years). But as it happened, in this instance, she was right - there WAS something wrong with me. Although I didn’t have other obvious symptoms, apart from the profuse sweating, I think it was an early example of Uhthoff’s, or loss of thermostatic regulation, or what the hell it is that goes wrong with MS. I shouldn’t have been literally dripping sweat in February - not even on a packed underground. Another example happened just a few minutes ago - one of the paradoxes of looking fine. A delivery arrived for me - the driver was a young girl. She said: “I’ve got a great big box for you”. I said: “Oh dear, I hope it’s not TOO heavy!” (I knew it was a metal bird feeder - the pole variety). She lurched up the path, and I took it from her, saying: “Er, OK…It’s not TOO bad”. She looked at me as if I was completely insane. If she had just carried it all the way from the van, why on earth would I have a problem just lifting it into the hall? I don’t look elderly yet, and I don’t look disabled. So she must have wondered why I was hesitant about accepting a big parcel she’d just lifted without a problem. I almost felt the urge to explain: “I know it was OK for you, but it might not be for me, because I have MS.” But that would somehow have made me seem even madder! Tina x

Hi, I am also one of those who put the blame on other things, when I was tripping up, falling down as folk spoke to me and suddenly wondered where the chuff I had gone!

I`ve been a yo-yo dieter for years, so used the excuse of weight gain to cover my wooden like leg when walking.

I thought I was being clumsy too. These things went on for over a year, before someone else had to tell me there was something wrong and would I PLEASE go see my GP.

It was then that I had to admit the truth to myself…and get some help. There rest is history!

pollx

It was my mum that thought it was a steroid side effect. I told my neurologist in a letter I am a bit embarresed for my mum about it. She even carried the steroid bottle with her to my last appointment so she could point out the side effects to the neuro. I had steroid side effects: Hair thinning and lots of acne.

I said to my mum imgaine if my leg got weakness and I couldn’t walk would she still think it was due to the same? I have got a lot of my MS education from this forum. It’s been good in that respect.

Hi, for years I had off and on numbness on various parts of the body. Which I had no end of excuses for. Fatigue which I put down to working and running after 3 children. The one that I ran out of an excuse for was my dragging leg so after nagging from hubby and now grown up kids went to the gp who said it might be Parkinson’s. what!!! Where did that come from? So after some tests it turned out to be ms. Mags xx

My first incidence (22 years ago) was during a very stressful time - had my first baby, my bother died & we moved house.

Speaking with the solicitor I knew what I wanted to say, but that came out was “Blahhhh!”. Thought I was going mad!

This happened in November. That Christmas (my son’s first) I was very quiet as I didn’t trust myself to speak … and I’ve got video footage of me saying nothing while opening Christmas presents with my new baby! (Ouch!)

But I didn’t mention it to anyone as I thought they would think I was mad and (surprise surprise!) it got better all by itself!

Hindsight … a great revelation!

Thanks for asking that question … I’ve never told anyone!

Emma x

I used to think I felt tired all the time due to laziness mixed with tiring profession (teaching).

Then one Friday in February 1999 (last day before the half term holiday) I developed pins and needles in right hand/arm. Mentioned it to a colleague as I was giving her a lift home

and her words will go down in my history “Don’t worry I’m sure it’ll go soon.”

Woke up the next morning unable to put weight on right hand side. Completely numb and tingly. Collapsed. Hubby carried me to GP who sent me to A&E. They tested for stroke, thrombosis (was on pill at time) etc before finally releasing after 8 hours of observation and clear blood tests. Husband most annoyed as he’d missed the (then) 5 Nations match!

Signed off work. Saw neurologist after 5 weeks. Told it was likely demyelination and might recur but would ease with rest. No mention of MS being related to this. Went back to work 4 weeks later and was ‘fine’ for 9 years (2 more for diagnosis). Interesting that I can remember it as if it was yesterday not 15 years ago…

Did have issues in those 9 years but put them down to virus / stress / being overweight / IBS / pregnancy / depression etc.

Que sera sera. Wouldn’t change a thing. 2 gorgeous children, 1 supportive hubby (when he gets his sports fix) and a loopy puppy later.

I just had pins and needles - initially for two weeks then it went away. Three years later it came back but the second time it didn’t go away, within 6 months I was told it was MS - I’ve now had them for over 12 years.

I’m sure other people were as unconcerned about my symptoms as I was - I thought it was a virus

JBK

I’m my own worst enemy!

With hindsight, I’ve had symptoms for decades and always explained them away due to other things. When driving my old Mini my right foot used to develop pins and needles and there were a couple of times when it was so bad I could barely lift my foot from accelerator to brake but I put that down to the poor shock absorbers in the Mini and the vibrations travelling through my foot! Of course it only happened severely a couple of times and then it didn’t happen any more so I never told anyone … I was in my 20s at the time.

In my 30s, I had a painful shoulder for weeks on end and put that down to stripping wallpaper and the subsequent redecoration of my living room. It would improve for a while but every time I did some gardening or mopped the floor or used that shoulder for anything, the pain would be back. Again, I didn’t bother going to my GP …

Even when I woke up with a lisp in my 40s, I convinced myself that I had bitten my tongue in the night. On the same day I got into work and couldn’t write properly but decided it was probably a stress thing and only went to the GP three days later when both symptoms had got worse and could no longer be ignored! I had been waking with numb hands for several weeks prior to that and had had a dizzy spell just the week before.

Tracey x