Clinically Isolated Syndrome - Symptoms won't go away!

New diagnosis and before diagnosis
1

Hi all :slight_smile:

I hope someone reads this as I just don’t know what else to do…

Basically, I woke up one morning in October last year and my joints ached like i was coming down with the flu… Then on the Thursday, I woke up and my knee didn’t feel right, it felt like it wouldn’t support my weight and my legs had pins and needles. I went to the A&E department (after visiting a walk in ctr and a GP who all told me not to worry and wait and see if it got better after the weekend) and they had a look at me and discovered that all the strength had gone from my leg and i had ‘low anal tone’ (not a pleasant experience)… They also sent me home after the hospital told them that they couldn’t admit me. Iwoke up on the Friday morning after a night of burning pain in my leg, and my left leg just didn’t work and i was dragging it along behind me like a zombie.

I went straight back to A&E who called an ambulance and they sent me to the hospital…After a week in there and three days of steroids, i was discharged with the promise of a follow up appt sometime between then and my death, lol. (As it was, the follow up appt was actually four months after i left hospital???)

I had some physio, and in the end i went private and was told (after a reeeeeeeeeeeeeallly long MRI) that i have had CIS (clinally isolated syndrome) and this had given me an inflammation on my spinal cord…

I was given Gabapentin for the pain and sent on my merry way home.

That was two months ago, and whilst my symptoms have improved, I still can’t walk very far without pain, i am shattered… no, EXHAUSTED after doing anything and when it gets to about 3pm,I hit a wall and become a brain dead moron. :slight_smile: - Iwork full time and was recently promoted before this all kicked off. My work have been amazing, and they have let me work from home when i need to and have been so understanding with everything. But i just can’t keep this up anymore.

I am so tired all the time, to the detriment of my little boy who used to have a mum that could kick a football around with or mess about with! I’m 29 but i feel like i am 79, all hunched over and hobbly… I often just wonder whether this is it? WIll i ever go back to being 100%, I used to dance, I used to jog but now the most exercise i do is walk to the loo. lol.

I’m not sure if the Gabapentin is making me feel depressed, or whether i have lost the positivity that used to get me through…?

How long can a relapsy thing last? Can any kind of professional person tell me whether this is it? If this is how i am going to be from now then at least i can just adapt, rather than living in hope that i will wake up and be fine?

Crikey. just read that back and i sound really whiney. I promise i am not normally like that, but once i started typing, i wasn’t sure how to stop?

With CIS, there doesn’t seem to be anything that can be done to make me better… ? From what i have heard, it sounds like it is down to my body now to do the work?

I really hope that someone out there can offer words of wisdom. I don’t really talk about it to people and i keep trooping on with everytrhing like i used to, but i am reaching the end of my tether now and i feel i am doing myself more harm than good?

Answers on a postcard …? please???

PS

Thank you for reading!..sorry if i bummed you out.

2

Hi willow, I am sorry you have been having such a rough time. It’s a mix of frustration and guilt that you can’t fulfill the roles you have. We have all been there i am sure at some point. Unfortunately this forum is for people all going through the same thing, rather than professionals in the subject giving medical advice. However, it could be argued that we as suffering individuals are the more specialises in this area than the doctors themselves lol. Clinically isolated syndrome, from my understanding is a funny one. You can have an ms like relapse, that could last a day, or even months, it’s really hard to say or judge. It might never evolve into ms, that would mean a second episode, more lesions forming, hence the name multiple, in multiple sclerosis. Basically, what I am saying really, is how long is a piece of string. I just hope you start to improve soon, for the sake of your own sanity, aswell as your son’s. Good luck :slight_smile:

3

Hi willow, im 27 so not far off yourself! I too was originally diagnosed with CIS! So it all started in june last year was driving to work and my foot felt a little numb this gradually got worse and travelled up my left side, my right eye was blurry, anything cold or water touching my skin hurt like hell. After a week of this i then lost all feeling when i was going to the loo. I went to the doctor who sent me straight to A+E as he suspected a tumour on my spine thankfully not the case i saw a neurologist who did an examination and mentioned ms in the conversation he said he would order an MRI which could take a few months, the next few days got worse so i went back and was admitted i stayed for over a week i had 3 day course iv steriods and an mri scan. The scan showed lesions in my brain and spine thus the diagnosis of CIS. I was discharged but had a follow up appointment with the neuro and a second mri in the december. After leaving hospital most things got better but still had the odd niggle here and there. The neuro said after a CIS it could take months as long as a year for things to totally settle. For me though although i felt relatively normal my second mri in december showed a nee lesion in my brain so i was diagnosed with ms in january of this year. So although i did not have any new symtpoms the new lesion meant he could diagnose ms. I am now on DMD’s and no major relapse since last year. I hope you get the answers you need. Has the hospital scheduled you in for a second mri?? Sarah x

4

Hi,

I’ve had a very similar experience to Sarah. I had my first clinically recognized episode in early 2010. It wasn’t strictly my first episode, as I realised with hindsight I’d had less severe ones previously. My neuro did believe me, but couldn’t really count them for the purposes of diagnosis, because they’d never been medically verified, and self-reporting isn’t considered reliable enough.

So anyway, although I’d not felt noticeably worse since the episode that finally took me to Neurology, I was scanned again six months later, and there were new lesions sufficient to diagnose - so it was no longer dependant on my say-so.

The symptoms of the first clinically documented episode, which had affected my spinal cord, did last about a year, so I think Sarah’s neuro is right. Not everyone takes this long, but it seems to be the pattern with me, that I take a long time to get better.

Also the improvements were very gradual, so I could not even tell day-to-day that I was recovering at all, but when I contrasted with how I’d been when it first happened, I realised I’d impoved loads - but by inches, not by leaps and bounds.

I didn’t even notice exactly when some symptoms stopped, because they faded so slowly. Although I do remember certain key moments, like realising I was standing on wet carpet (it’s OK, I hadn’t peed myself!) - when I couldn’t before, because my feet were so numb. You’ve never seen anyone so pleased to realise they’re standing in a puddle, because it meant my feet could actually FEEL!

I have to say, there’s a possibility some symptoms will be permanent - even from a CIS. The body will make what repairs it can, but they’re not always perfect. Almost everyone recovers at least partially, though.

I’m afraid there’s always an element of luck involved, and no professional will be able to predict exactly how complete your recovery will be, or how long it will take. I’m told an “average” relapse (or clinically isolated event, if that’s all you’ve had so far) lasts about five or six weeks, but don’t forget that “average” can be drawn from a huge spectrum, so six months is not exceptional, neither is it an indication things won’t ever get any better.

Tina

x

5

Thank you all for your words :slight_smile:

It really helps knowing that there are other people out there who know what it’s like…!!

I have more physio next week and i’m hoping she may be able to suggest something that will help my mobility a little more. and early nights are the order for me at the moment.!!

it’s funny how doctors have the final say on diagnosis’s… My neuro thinks that I may have had a slight relapse at the beginning of last year as my leg got pins and needles and I couldn’t feel it properly, my GP sent me to the A&E Dept because he was worried i was having a stroke, but the DR at the A&E listened to my heart said the words “You’re not having a heart attack, you can go home” and walked out… I felt like such a fool!! but looking back, maybe that was my body warning me of things to come!!

I only have the one lesion, so the hopsital is monitoring me for the next 10 years or so in case i get another one. My mum has MS so i guess they think that there is a chance i could get it too (even though in literature, it’s not hereditary, yet all drs i have seen don’t agree with this)

I have thought about it a lot, and i don’t think i would mind if i ended up with MS, my mum went through life with it and i have grown up knowing about it and my support network is fantastic… it’s just the current point i am at with no support from dr’s because there is nothign that they can do and i am frustrated with not being as speedy as i used to be!!

I am sooooooo sorry if i sound moany, I actually am quite a poisitve person in real life, maybe i have been hiding how i really feel from everyone else which is why i sound like a moaner now…!!!

AGH. Oh well. I’m sure my body will wake up soon. I just can’t understand ho wi can wake up one morning and my leg doesn’t work but my body won’t do the opposite… because that would be cool.

Anyway I shall leave you all to your day, and thank you again for your words :slight_smile:

Debs x

6

Thank you all for your words :slight_smile:

It really helps knowing that there are other people out there who know what it’s like…!!

I have more physio next week and i’m hoping she may be able to suggest something that will help my mobility a little more. and early nights are the order for me at the moment.!!

it’s funny how doctors have the final say on diagnosis’s… My neuro thinks that I may have had a slight relapse at the beginning of last year as my leg got pins and needles and I couldn’t feel it properly, my GP sent me to the A&E Dept because he was worried i was having a stroke, but the DR at the A&E listened to my heart said the words “You’re not having a heart attack, you can go home” and walked out… I felt like such a fool!! but looking back, maybe that was my body warning me of things to come!!

I only have the one lesion, so the hopsital is monitoring me for the next 10 years or so in case i get another one. My mum has MS so i guess they think that there is a chance i could get it too (even though in literature, it’s not hereditary, yet all drs i have seen don’t agree with this)

I have thought about it a lot, and i don’t think i would mind if i ended up with MS, my mum went through life with it and i have grown up knowing about it and my support network is fantastic… it’s just the current point i am at with no support from dr’s because there is nothign that they can do and i am frustrated with not being as speedy as i used to be!!

I am sooooooo sorry if i sound moany, I actually am quite a poisitve person in real life, maybe i have been hiding how i really feel from everyone else which is why i sound like a moaner now…!!!

AGH. Oh well. I’m sure my body will wake up soon. I just can’t understand ho wi can wake up one morning and my leg doesn’t work but my body won’t do the opposite… because that would be cool.

Anyway I shall leave you all to your day, and thank you again for your words :slight_smile:

Debs x

7

This post has really helped me as I have been trying to find out what has happened to me for 7months now. I am under a neurological but he is keeping very quiet. It took 3 months before I was able to walk instead of shuffle and I am on medication prescribed by my gp to control other symptoms. Gabapentin, diazapam and amytriptyline. i am not fully recover and am very fragile still. I have a four year old and he had to go and live with my parents 300 miles away over Christmas. It was really hard. I am interested in what you said about your mum. That was really encouraging to me. This post has given me the confidence to talk frankly with my neurologist in two weeks time. Keep strong. Michelle.

8

Hi Michelle,

I’m glad mine and all the other posts on here helped… It does feel good to get it all out in the open!!

I hope you have some luck with your neurologist and start to feel better soon!

9

Hi Michelle,

I’m glad mine and all the other posts on here helped… It does feel good to get it all out in the open!!

I hope you have some luck with your neurologist and start to feel better soon!

10

I totally understand what you are going through, I was diagnosed with CIS in October.

Mine started Months ago, I got pins and needles in big toe, this continued for a couple of Months. I was just about to get married and was very stressed, trying to lose that last stone to fit into my suit… My symptoms got worse the numbness spread to my legs and stomach. It was a feeling I couldn’t describe, almost like someone had taken over my body…

I went to the doctors they palmed me off for a while saying it was probably a trapped nerve or virus. My symptoms got worse so I went to A and E. Again here I was accused of wasting there time, then this horrible nurse turned round and said it is probably MS. I was a bit ignorant when it came to MS and automatically assumed I was going to be in a wheelchair… My worry went into overdrive…

I started going on the Internet and pretty much self-diagnosed myself which made my stress levels (and my newley wed annoyed) I went to see a neurologist who was greatly respected. After an MRI in my back they found lesions in my T2, I then had to have a brain scan. They found 2 x small lesions in my brain (but these were considered within normal limits) they effectively said the brain scan was pretty much clear. I was told that the chanches of another attack were high but it could potentially re-occur within 10-18 years (odds that I suppose most of us would take) I went away feeling relieved in some aspect. I was given pregablin and told that will help.

Nearly 5 Months later and I am still suffering, they pumped me up to over 450mg pregabalin (Which is a really high dosage) it hasn’t really done much to be fair. Although my numbness is bad , I have been able to run, which in a weird way makes me feel better.

I have recently changed doctors who has put me on citlaphran which is an antidepressant, I think they are just trying to make me feel better. Hopefully this will work. I feel like it will never go and are almost learning to live with the symptons. I keep thinking I have MS and are driving my family mad (who have been great)

My wife is now pregnant, so I am over the moon, it gives me an added incentive to get better, I am going on a bit I know, but I know how you all feel, for me the the uncertainty and not knowing when it will go is the killer. Like any bloke I wish there was a magic button that would make it go away. If anything this has made me appreciate my body.

I am hoping that hitting the gym again, and trying to eat well will give me a positive mindest and help me get bak to normal.

I would like to speak to people who have similar issues, so maybe we can all moan together…

I wish everyone the best and hope you all are cracking on with life!!

11

The MS Trust has a useful fact sheet on CIS which may be worth looking at. Have any of you CISers been offered DMT’s? Further follow up MRI’s?

12

Hiya,

I’m a CISer diagnosed last October. I’ve been really lucky with my doctors, referrals and neuro but I’ve not been offered any DMDs, but they put me down for a follow up at 6 months and MRI in 12 months. I wasn’t told I was high risk of developing MS but I had 1 attack in right leg in May/June and then another worse one in my left leg about 6 weeks later (1 week before referral appointment to neuro) then the mi showed 2 lesions but the neuro classed it all as 1 attack. Does anyone have any ideas as to why they do that? I’d already set the ball rolling when I had the first one its just that the second one happened before the appointment!

13

Hi there

I was diagnosed in November. At the end of September, the tingly, pins and needles feeling started in my toes and then slowly worked its way up. Much like Keepy123 above. I also went to various different doctors and eventually had an MRI and a lumbar puncture (which I wouldn’t wish on any one ever!!).

They only found one lesion in my brain - an old one apparently - and a few in my neck and lower down my spine. I was put on a 5 day cortisone drip and on 1 December I started with the Betaferon injections.

In January I saw a second neurologist and he advised that as there was only one lesion in my brain, technically I fall under the CIS category. There was, however, little doubt in his mind that it is MS and confirmed that I should stay on the Betaferon.

I guess fortunately my symptoms are quite subtle. The tingly feeling continues and on injection day (every second day) gets a bit worse, especially in my feet. Exercising also exacerbates it a bit and climbing steps can be tiring although I can swim 40 laps at the gym. So it can be quite disconcerting too. The side effects of the injections also aren’t fun - feverish feeling all day along with headaches but I find tea helps - maybe the caffeine!? And best of all I’m slowly starting to resemble one big red swollen pin cushion! :slight_smile:

My new life motto: things could always be worse!! So I try stay as healthy as I can and take one day at a time!

The point of my post and perhaps things just work differently in South Africa but even though it seems I am technically still in the CIS phase, both neurologists I consulted confirmed that I should start on the Betaferon treatment immediately.

14

Hi, I wondered if any of you could give me any advice. I have been feeling lightheaded/dizzy for around 4 weeks now, been backwards and forwards to docs who gave me tablets for vertigo: which have done nothing. Taken every blood test possible and all came back ok. Last week I had pins and needles up my right leg and arm and this lasted for about 24 hours. 5 days later and the tingling is still quite severe, mainly in my right arm now. And it seems to be more in the morning when I wake up. I rang 111 who advised me to go to a walk in centre because they feared I may have had a mini stroke. I have been to primary care and they told me because my blood pressure and heart rate was ok and I look healthy and all my blood tests are ok there is nothing they can do basically. I have the most awful sensitivity in my teeth now and the numbness/pins and needles is driving me crazy; however I can still get about ok. I have asked to be referred to a neurologist, but they said they don’t know how long it will take. I just want some answers. anybody have any ideas??

15

Hi, I just realised that no one has responded to your comment from a few days ago and you must be anxious for a reply. I’m fairly new on this forum so not quite sure how it fully works myself, you possibly should have added your comment as a new topic?

I’m sorry to hear you’ve been going through a worrying time. I think you asking to be referred to see a neurologist is definitely the right thing. The only downside is you may have to wait some time for the appointment to come through. It took me from June last year being referred, till November to see one, but that could be so different depending on where you live.

Your symptoms could be one of many things and without the correct tests and scans it’s impossible to know but the neurologist will sort that for you. Any illness can be such a waiting game for specialist appointments to come through or symptoms to better themselves or not. I hope it’s not too long before you get your answers. Hopefully one of the more experienced members will see this and respond or you may have to write it again in a new topic where you will definitely get a quicker reply.

Just read this over and it seems a really wishy washy reply when you’ll be looking for a definite answer. If your symptoms do turn out to be MS it’s a complicated disease and no one can give you definite answers anyway as nothing is predictable and its unique to everyone. I’ve been told I’ve probably had it for ten years and just managed the symptoms so it may not be as bad as you’re fears.

Hope this has been helpful to you x

16

Thanks, it’s the not knowing that is worrying me and possibly making my symptoms worse because of everything I read on the Internet. I have paid to go private as I can’t go through this worrying any longer; I’m hoping I can get some answers soon.

Thanks x

17

Hi again NKristy,

Hope all goes well with your private appointment and you get your answers soon. Let us know how you get on.

take care x

18

Hi all,

So, its almost a year after I posted this!! Can’t believe it has been that long!

My symptoms are a little better then when i first posted (hurrrayyyy)… although my legs are still weak, but THE CRAMPING AND TWITCHING is driving me bonkers!

It’s humbling to find I haven’t been alone in this, so thank you to all you lovely people for posting :slight_smile:

I have been to see an NHS and private neuro again since the post but they haven’t been able to give me any more information. Just that it could take a long time for me to get better, if i do…

The worst thing about a ‘CIS’ diagnosis is that there seems to be no information because it’s so unique to the individual who is suffering from it. Which i think most of you would agree, sucks !!

Some days, I can mosey on through and apart from walking like an old person, i get through it without too much hassle. but then there are the days when I am aware of my legs all day… Not sure if that makes sense, but when are you ever aware of your legs? lol… They are uncomfortable and sluggish and as soon as i sit down the twitching starts…shortly followed by the excurciating cramps. then there is what i like to call ‘S Foot’ when my foot/ankle goes into an S shaped and feels like the bones are trying to snap under the skin. I can’t put weight on my foot, i can’t move it, I just have to ride it out.

Does anyone else have this? the cramps wake me up throughout the night… The dr prescribed me Baclofen, but i can’t take it during the day because it spaces me out (which is unusual apparently, the dr thinks i am sensitive to drugs).

I think the hardest thing about this is the not knowing (which is what all the fact sheets say) and the fear you go through when you get a new twinge or pins and needles and panicking it’s a new symptom or that i am going to end up not being able to walk again… the other hardest thing is that i can’t jog or dance anymore… however this has not limited my calorie intake :slight_smile: … so i can feel myself growing to the size of a house, but it being quite hard to keep the weight off because i can’t do anything strenuous because i will pay for it for the next week.

Does anyone have any good exercise ideas that i can do from home? I tried swimming but it was expensive and i don’t drive… So has anyone got any good cardio work outs that don’t involve your legs??

To each and every one of you, thank you for posting. It’s amazing to see the love that strangers have for each other in the time of need. xx

19

Hi willow,hope everything goes fine with you.Sorry for my bad English,as my english is rusty. I just found a couple of days ago about my younger sister CIS.She is now in hospital under methyl predidolone.you asked about exercise.Today I was wondering if Yoga helps my sister who is like a part of my heart!I had just alittle time to read but I found it very helpful.I suppose there are different kind of Yoga.The classic and aerobic types.The one i found helpful.What I read was the classic type we should choose as aerobic exercises are not safe for people with MS. I pray for you and all people who wrote their stories here and also my sister who is just about to get married.

20

CIS was such a hugely stressful time for me. I knew I was high risk of going on to develop MS and the thought of being a sitting duck and having to wait for the next big relapse totally terrified me. I took the bull by the horns and pushed for a DMT which was eventually agreed. I asked for regular MRIs to ascertain any changes and 2 years later was diagnosed with MS following a new lesion. I had not had any symptoms so it goes to show MS can progress and you can be completely unaware. At least I caught mine early.

Follow up MRI’s after CIS are so important.

I actually felt better having the formal diagnosis. Living in limbo for me really was hard to bear and I felt like my life was at a standstill. With the diagnosis I was able to obtain much better treatment and move on with my life.