Forum

my experience of symptoms

hello and happy new year to all readers,

I have visited this forum alot over the last few weeks and have found it comforting to read of others experience of MS symptoms and all that comes along with them. Its the first day of a new year and I want to start this new year with something positive after a hard few weeks. Although I have not been diagnosed with MS I have experienced the symptoms, the fear, the confussion and the NHS diagnostic process. I hope that if I write a little bit about my experience it will help maybe someone like me new to this along their journey, and maybe give someone the comfort that I gained from reading other peoples similar experiences.

For me it started on Thursday 24th November waking up with three numb fingers on my left hand, but thinking it had been caused by maybe sleeping on it and because i have had it befor i ignored it and carried on with my weekend. Friday night I noticed my left hand felt numb and up to my left elbow felt tingely and my arm felt heavy. Saturday morning I woke up and again noticed that my arm felt dead/heavy/a half numb half tingley feeling and I didnt feel i had so much control over moving it. I thought it may have been circulation problems and so did alot of jumping and dancing around to try get it working again! Saturday night at my friends I ended up dropping my glass of wine when I passed it to my left hand, my grip had become weaker and the whole sensations were beginning to really annoy me. Getting out of the taxi I noticed i was dragging my left leg slightly and just felt odd walking. I put it all down to having had a drink both friday and saturday night and not much sleep so I spent all sunday in bed. Sunday was a little scary as being led down in a quiet room I began to feel what was going on in my body. All of my left arm and leg, and down my left side at the front was a tingling and half numb feeling…a bit like anesthetic wearing off. I could feel that side of my body, but i felt less and the tingleing felt like pins and needlles most strongly in my hand and foot. I was beginning to put all my weight on my right side when walking around my house. I was doing everything fine and as usual but my foot was starting to really annoy me. A friend convinced me to ring NHS direct, so at half eleven that night befor i went to sleep i rang them. I was advised to go to the emergency room asap, which i did. By this point walking was a real struggle. I could only put a lil bit of weight on my tippy toes of my left foot and was limping real bad. I was hooked up to a heart machine thing and had my eyes veiwed and blood pressure taken, and after a long wait sent home with a doctor who said ‘your too young for a stroke or heart attack you should have used your common sense and just rang your doctor’. He suggested I go home and wait for it to pass.

I tried going to work, pushing myself to ignore my foot and walk faster so I didnt notice the tingleing. As soon as people saw my walk at work I was sent home and told to see a doctor immediatly, I looked pretty bad leaning and limping to one side and was also feeling spaced out.

I booked in with my doctor asap, who tested my reflexs, my eyes and heart rate and blood pressure and said she had no idea what to suggest. After I had exhausted myself walking to the doctors in the rain, struggleing to climb the stairs and even open the door, I ended up crying saying ‘im a single parent and i dont think i can look after my son’ and i really meant it. She advised I come back if it gets worse.

It got worse, i started to worry and panic, when picking my son up from school I cried when the children were around me, i felt so hypersensitive on my left side like it was shaking really fast, i was sensitive to movement around me, to noise and any slight breeze would send me into a shaking fit of my left arm and leg. I couldnt walk the short distance home.

Back at the doctors she did all the tests again and said she would refer me to a neurologist, which are high in demand and the wait could be months. But when she saw how bad my walk was and how i couldnt open the door to get out of her office she rang the hospital. I was sent to the hospital right away. I had had the symptoms a week and a day in total.

I spent a week in hospital with my heart and blood pressure regularily monitored. I had blood tests and two lumberpunctures and an mri. I had worsened in hospital with the hypersensitivity on my left side, going into a shaking fit at the smallest touch or if i heard a sudden sound. I would then go light headed and feeling i would pass out. it even felt sometimes like my brain was swaying. I started having panic attacks which ive never had befor quite often, sometimes because i was scared in those surroundings seeing people in pain, sometimes because my left side going hyper sensitive. i also stated to hold my left arm up to my chest and my hand like a claw! I had to be wheeled everywhere as i couldnt stand to do more than a few mins dragging my heavy tingley leg around and my breathing would go real strange. my rib area on my left side became swollen with how i was holding myself.I saw a neurologist by good luck as someone had failed to show to their appointment and he explained that a patch of inflamation had been found at the very top of my spine and explained that my nerves like wires had a protective layer around them. My antibodies for an unknown reason had attacked this point of my spine causing damage, with the symptoms presenting in my left side. He said I would be on a steroid drip for three days then I would go home. He said I had a twenty per cent chance of being diagnosed with MS in the next five years, that my brain was healthy and that there is a good chance it was a one off attack, i might recover almost fully but not completely and i had to wait and see.

I was extremly happy with these results as i had had a week in hospital believing I may be paralysed on my left side and unable to walk forever. I felt on a high beleving that what he said was ‘we will cure you, and everything will be ok’. The steriod drip was at first amazing! I was able to walk almost normally for ten mins for the first time in two weeks, even though i was having to think hard about my movements, walking slowly like i was tring to remember how to do it. I didnt sleep for the three days i was on the drip and so crashed on the day i left hospital. even though i knew i should be happy, that i had been happy throughout my hospital stay, i had remained positive and calm (despite panic atttacks and crying fits very often!) But going home ‘not cured’ with a horrible come down from the steriods I began to feel really miserable. My walking was a little better but still not great at all. I still felt hyper sensitve and couldnt do much apart from drag myself around the house.

I was called back into hospital for more blood to be cross examined with the lumberpuncture. I am still awaiting my results as they have got lost floating between the hospital and the doctors somewhere, and nobody can tell me where they are.

I have landed here feeling a little bit like have been chewed up and spat out. I have felt depressed by the whole process and cant shake the feeling of being completely miserable, which is so frustrating as I was happy befor, and know I have every reason to be happy now. Im sure I just need time to recover emotionally.

I am now left with a tingley foot on my left, a slightly tingley foot on my right, my left hand almost normal, just a little numb. I have a constant shakey/buzzing tingley feeling at the bottom of my spine in the middle, which when i move in certain ways like bend my head, a electric shock type vibrating/tingley feeling spreads all up my back down both legs and across my tummy and chest. I also get numb hands and arms very very easily now. This is confussing as it is different from my symptoms befor!

But I am now walking much better and for longer. I have been shopping for half an hour on my feet and was just feeling very tingley and shakey inside after. I have been out to the pub for a few hours and even had a lil boogie, but had to leave due to my shakey twitchy vibrating spine becoming too much to ignore and feeling so sensitive to people beeing around me- like a nervous wreck!

Im not sure if these feelings im left with will ever go away. I only know bits and pieces from things ive read in forums and sites like this, but i know it is possible to get close to a full recovery, that I have a very good chance of it being a one off. I have learnt alot over these last few weeks and it has been a strange, scary but mostly positive experience. Even though I am feeling down still, miserable and really low on mood and energy and confidence im pretty sure i will pick up eventually and return back to my old life as much as i can.

From reading other peoples experiences on here I can see I am one of the very very lucky ones. What some people have had to deal with, and for such along time, that there are many will still no diagnosis after years of being poorly is a real eye opener to me, someone aged 25 who has never been poorly in hospital befor. I have so much love and respect for everyone with MS now, and those who are still ‘in the waiting room’ without diagnosis. My very short and not so bad experience took alot out of me so i really cant imagine how much strength it takes you guys to keep moving on and keep your head above it all.

Any help I can offer anyone on this forum, whether it is for me to listen or if you want to know more about anything I have wrote please just ask.

I plan to get myself a good counsellor, do lots of yoga and reiki, i have booked myself in for a massage when/if my tingles die down abit and I am going to move foward and treat this like a little blip in my life that has taught me to slow down, love myself and my body more, chill out and live life more fully,with more fun and adventure too. im very very lucky to have got the results i did and so fast too.

any advice/feedback/questions please feel welcome to comment. has anyone here ever had this as a one off? am i right in thinking that only a 20 per cent chance of MS is an amazing result to here? any advice on if/how i can recover? do you think this will go away or could it be here forever? all stuff ive been thinking about.

happy new year, best wishes and good luck to you all x x x

Hello, and welcome to the site

Your story sounds like a very typical CIS (clinically isolated syndrome) - a one off attack of demyelination. As your neuro told you, that means that you could develop MS in the future, but I personally know of several people who had attacks 20/30 years ago and never had another, so here’s hoping!

There is a good chance that your current symptoms will continue to improve. The body is best at repairing itself in the early days, but it can take a while and the progress is usually slow so it’s not immediately apparent. What normally happens to me is that I wake up one day and realise that “I feel better!”

What can you do? Top of the list for me is to start taking vitamin D3 supplements - there is a growing amount of evidence that it is protective for MSers. Ideally get a blood test to check your levels first (a lot of MSers have low levels) and have a look at the vitamind3uk and vitamindcouncil websites. You can buy supplements much cheaper on-line than in shops. A lot of us take 5,000iu a day. (I take a bit more because 5,000iu a day didn’t get my levels up to the recommended amount.) Apart from that, keep fit, stretch regularly, eat healthily (with plenty of oily fish), apparently we should drink alcohol and coffee too (a recent largescale study showed MSers who did remained less disabled than those who didn’t!) and do exactly what you said yourself, “slow down, love myself and my body more, chill out and live life more fully,with more fun and adventure too” - sounds like a perfect plan :slight_smile:

Karen x

@hertsandminds thanks for your reply. reading you think im a tough cookie made my eyes go all wartery! ive always considered myself to be too soft, over sensitive and dramatic! but something kicked in when i got to hospital, some strength i didnt know i had, just something in my head clicked into this foward thinking keep marching kinda way of being. I still nearly passed out everytime I saw a needle though! Im interested to know how long you have felt ‘unwell’ and how far you are with it all. Do you feel you need a diagnosis in order to move foward with it all? And obvs get access to help. Wow I wish you all the luck in the world with it. Just thinking and reading about peoples experiences with MS makes me a little speechless, like just wow. Its unbelievable what strength lies within each of us when its needed in situations like this.

Your so right about being more reflective about life, I started to write a list in hospital called ‘the things you may learn whilst laying in a hospital bed’!. I might write it up and share it on here somewhere. Im very reflective anyway, but I have had a lot of depressive/anxiety problems in the past. I never got diagnosed for it as I dont believe the mental health system to be a healthy one! I went to counselling instead and it really really helped. The thing that sucks is I was feeling the happiest Ive ever felt in my life for some time befor this happened, so losing my confidence and becoming low in mood again was the scariest part. But I have learnt to accept that as part of life, and something that is never forever and is quite healthy in that it alows you to get all the worry and stress out of your system. Im really interested in the links between MS and depression and anxiety. Something I’ll prob spend some time reading about.

@Karen Thanks for replying. At the moment I am taking a multi vitimine pill and an evening primrose oil pill but im going to take your advice and get extra vit d3 and some omega fish oil as i dont eat fish so i am no doubt low in this. Thanks for the advice, it makes sense to me. I dont feel ive even started my recovery yet! my minds been on christmas, my son and ive done alot of lying around feeling sorry for myself! haha! and thats all. but my son is back in school wednesday and im feeling much more positive now after a little sulk and im ready to start with the yoga, i have a physio appointment for in a week or two, and just looking into ways to help me relax as much as i can because i really believe that the emotions are carried within my body, so to take care of them as much as my body. Should drink alcohol and coffee?! cool, im a big fan of both and would be sad to let them go! I think we have some control over this, but not as much as maybe i’d usually like to think, and I think a leason I’ve learnt from this is ‘relax, you have no control, just live, listen to self and body and you’ll do ok’ Its something I have to tell myself everytime I google for ‘MS help’ haha that actually ive not much control on how this story ends.

wish you both all the best with this :slight_smile: xxx

@hertsandminds thanks for your reply. reading you think im a tough cookie made my eyes go all wartery! ive always considered myself to be too soft, over sensitive and dramatic! but something kicked in when i got to hospital, some strength i didnt know i had, just something in my head clicked into this foward thinking keep marching kinda way of being. I still nearly passed out everytime I saw a needle though! Im interested to know how long you have felt ‘unwell’ and how far you are with it all. Do you feel you need a diagnosis in order to move foward with it all? And obvs get access to help. Wow I wish you all the luck in the world with it. Just thinking and reading about peoples experiences with MS makes me a little speechless, like just wow. Its unbelievable what strength lies within each of us when its needed in situations like this.

Your so right about being more reflective about life, I started to write a list in hospital called ‘the things you may learn whilst laying in a hospital bed’!. I might write it up and share it on here somewhere. Im very reflective anyway, but I have had a lot of depressive/anxiety problems in the past. I never got diagnosed for it as I dont believe the mental health system to be a healthy one! I went to counselling instead and it really really helped. The thing that sucks is I was feeling the happiest Ive ever felt in my life for some time befor this happened, so losing my confidence and becoming low in mood again was the scariest part. But I have learnt to accept that as part of life, and something that is never forever and is quite healthy in that it alows you to get all the worry and stress out of your system. Im really interested in the links between MS and depression and anxiety. Something I’ll prob spend some time reading about.

@Karen Thanks for replying. At the moment I am taking a multi vitimine pill and an evening primrose oil pill but im going to take your advice and get extra vit d3 and some omega fish oil as i dont eat fish so i am no doubt low in this. Thanks for the advice, it makes sense to me. I dont feel ive even started my recovery yet! my minds been on christmas, my son and ive done alot of lying around feeling sorry for myself! haha! and thats all. but my son is back in school wednesday and im feeling much more positive now after a little sulk and im ready to start with the yoga, i have a physio appointment for in a week or two, and just looking into ways to help me relax as much as i can because i really believe that the emotions are carried within my body, so to take care of them as much as my body. Should drink alcohol and coffee?! cool, im a big fan of both and would be sad to let them go! I think we have some control over this, but not as much as maybe i’d usually like to think, and I think a leason I’ve learnt from this is ‘relax, you have no control, just live, listen to self and body and you’ll do ok’ Its something I have to tell myself everytime I google for ‘MS help’ haha that actually ive not much control on how this story ends.

wish you both all the best with this :slight_smile: xxx

‘apparently we should drink alcohol and coffee too (a recent largescale study showed MSers who did remained less disabled than those who didn’t!)’

Bl**dy fantastic news!

Ooooooh yeah! I don’t drink coffee, so I guess I should up the alcohol intake???

Kx

Hi Amy,

I came upon your post and it is very similar to what I have just gone through. How are you feeling now (I think its been 3 years!) Did they ever find your lumbar results?

I hope you are well and life back to normal

xxx

Hi I think my experience sounds similar. 8 weeks ago pins n needles as spasms in my left leg began . Now left arm also numb can’t grip anything. I’m in bed 95% of the time trying not to fall over and do more damage. I’m awaiting more tests and diagnosis an feeling pretty rubbish right now. I tree posting my first msg on this forum but Can Get It To work. Seems like my brains going now too. Any help appreciated

hi,

it was10yrs ago when i was startled by a loud commotion nxt door 2am .i started to feel very weak and afraid, i felt like a very frail elderly citizen ,i also had a numbness / heaviness in left arm and leg.At this time i was 42 yrs of age and played a lot of football ,i was concerned that i might of had a mild stroke and wondered if i would be able to play football again.

i saw gp who made an appointment at hospital to have a course of steroids put into my ststem through a drip for 3 day at an hour a time.

this made me feel stronger and not frail ,my heavy limbs where still the same but i carried on playing sport and the heavyness went after a mnth

i had an mri scan and was diagnosed with demilination i have had 2 more scans in the 10 yrs since with lesions showing up,

i was told that the demilination could lead to Ms 10 yrs ago when i first had symptoms {above}

i am now 52 years of age. and have been diagnosed with ms

my symptoms are numbness in arms which migh last about a couple of hours. dizziness.anxiaty.i also have mild turrets.

i try and live life as normal asposs and not get angry over excited worried etc as these symptoms start symptoms off.

Hi I’m new here was diagnosed with ms on the 29th of january 2018,i woke up on the 21st of december my head felt funny i got up for the toilet i was dizzy & was staggering into the walls,so my children got me an ambulance went to the hospital I went to the hospital they did a c.t scan then 2 days lateral mri showed white lesions. So I was finally diagnosed after a neck mri & full spine.

That must be the quickest diagnosis on record! From symptoms to scan to diagnosis just over a month!! Hope your doing ok!!

That is pretty much what I thought. No waiting around for months or years, having tests, sitting on the fence of limbo.

If you have any questions Anonymous, feel free to ask them here. It must be a frightening new world you’ve entered into.

Meanwhile, you may find this useful: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

Sue

Fast diagnosis? You lucky person. There are clearly many, many people who spend months and months waiting to get out of the ‘limbo stage’. I waited nearly five months for the initial neurologist appointment. I am still waiting six weeks on for the letter report, as is my GP. I am still waiting for the MRI appointment which apparently hasn’t even been requested so far. The neurologist indicated that it could take ‘some months’ before the report is available.

It is, as everyone agrees, the not knowing that is difficult to deal with. Stillthere are many folkworse off.

John