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This is hell,can anyone give me hope?

I posted a couple of weeks back about having horrific vertigo and being unable to move without vomiting. Well things became really bad and I ended up being admitted to neurology ward for Iv steroids,fluids and anti sickness. I was in 4 days and discharged. This was 2 weeks ago and 3 weeks ago since the symptoms started. I am now able to walk around albeit very slowly and unsteady. I can only describe it as been drunk, balance completly out, vision very distorted and surviving on daily anti sickness to keep the nausea/vomiting at bay. I’m also very dizzy and completly disorientated. Added to that my mouth has fell like I have had a session at the dentist, completly numb and like I’ve had anaesthetic. My legs and arms are so weak and even doing the smallest of tasks exhausts me. The steroids brought me out of the worst - allowed me to be able to walk about without vomiting but I am still left feeling completly dreadful. Has anyone else had a relapse like this? This is by far the worst I have ever had. I feel like I don’t even know myself I’m so disorientated. Saw my neuro on Wednesday and he was very vague. Says my latest MRI (which I had whilst I was admitted) was stable. He’s taken bloods to check for anything else that could be causing me to be like this. I’m lost and very scared that I am going to be like this forever. 3 Weeks is a long time to feel this ill and with very little improvement. Can anybody offer me any advice,help,words of wisdom…anything basically because I am desperate. Many thanks xx

Could it be something else? A colleague was off work for 6 weeks plus with an inner ear problem (? Labyrinthitis) that presented very similar symptoms to yours. We all tend to assume MS but if MRI stable it might be worth checking symptoms without mentioning MS. Online NHS symptom checker is pretty accurate - diagnosed my daughter’s Scarlet Fever anyway. Hope this helps. Take care. xx

hiya

just wanted to let you know that i have read ur post.

however i dont think it would be beneficial to tell you my story EXCEPT to say to hang on in there. i have had similar and yes its a living hell. i found it beneficial to think in 15 mins slots-not days/weeks. use distraction techniques in any way you can to see you through each 15 mins. be proud of anything, however small it may seem (moving my toes after weeks of trying made me glad i persevered even when it looked impossible)

let ur mind rule ur body-not vice versa.

ellie

I have been checked for labyrinthitus (sp?) and definatly isn’t that. Although I wish it was lol. Ellie that is really useful advice,thank you. I’m panicking about the future, I have 2 children,one who is only 2 and is also disabled himself. My husband has been off work for 3 weeks unpaid looking after us but he absolutly has to return Monday so I am home alone and petrified how I am going to cope. Dare I ask was it a long recovery and did you fully recover?

Hello, I had a relapse very similar to yours last September but without the sickness. I couldn’t walk in a straight line, repeatedly walking round in circles, double vision and felt like I was in a bubble- underwater ? I was prescribed steroids which did fix the problem gradually- I really didn’t think it was going to end but it did ! My OH was great through it all and very supportive :slight_smile: My relapse lasted 3 weeks but every day felt like an eternity. I am pleased to say it will hopefully get better for you very soon… Sending positive vibes your way …, L x

hiya again

i am single mum of 4-3 still at home. my younest two were ages 3 and 4 when i was diagnosed. i have never fully recovered-now have carers in BUT i will stress again we are all different (tho do understand why u asked me the question) but its of no use to cos you are you, not me!

i also understand the fear bit and thats why i suggest getting ur mind strong even tho ur body may be failing you.

am happy for u to pm me if u choose…

ellie x

I too have had a very severe relapse like this,(infact 2) i had no balance AT ALL, double vision,severe vertigo,

if tried to stand i just fell backwards,worst of it lasted about 9 or 10 weeks,then i gradually improved,to the point where i could manage if i paced myself

you will get stronger.but it will take quite some time,it helps to make a list each day of the things you could achieve that day,i make a list like this when i am bad,and it makes me realise that i still can do things for myself,even if its just getting to the bathroom that day.

making a coffee for myself,putting the washer on and so on,making the list makes you realise that you have done more than you think you have done,and helps build your confidence in yourself back up again,and you dont feel quite as ‘useless’

i know 3 weeks seems such a long time to feel as bad as this,but it isnt that long in terms of a relaspe,mine normally last 10 weeks before i start to improve,ive had bad ones that have lasted 6 months

its also good to tell yourself that you will get better,it may take time ,but you have to stay positive.i count myself lucky though as i have always ‘got going’ again and i can still do light housework and gardening,and for that i am very grateful.

hope you feel stronger soon

J x

Hi I had a relapse in November like this I didn’t realise I wS at the start of a relapse and every time I got in my friends car I couldn’t concentrate on the road I had to keep closing my eyes and falling asleep. I was4 hours from him with my 4 yr old. I kept being sick if I moved too much. Then a week later went to bed my dog got me up ah 4 in the morning the big relapse had came I couldn’t see properly my focus was way off was falling about like I was drunk and being sick when I moved. Had to phone my mum to come, she put me in the car and took me to hospital (which scared me mum doesn’t do hospitals) but my eye muscle had stopped working. Got admitted dx steroids, when I got out dad had to wash my hair as I couldn’t take the eye patch off at all. Took 4 weeks then gradually started getting better. It left my exhausted . Hope you start to feel better soon. I’m always amazed what we can achieve. When we have to.x

I have had a relapse before which was exactly as you describe. You are right! - it is a living hell!

It took me a while to recover from it. After about 3 weeks i saw a small improvement but i tried to push myself too far and too soon and i ended up back at square one again. I had a newborn baby at the time and i could not trust myself to pick him up and carry him.

I felt very guilty but i had to let people take over. I had no choice. What if i had dropped my lovely new baby boy? i would never live with myself!

My husband had time off work at first then my mum did the school run for my older child. My mother-in-law and sister-in-law took over my newborn for 2 weeks. I was offered help also from my heath visitor who had a nursery nurse working alongside her. I didn’t use this help myself as i was lucky with family but i would have done if i had no alternative.

My sister took my kids out to let me rest. My mum did my shopping.

It was a horrible time but we rallied round as a family. I started to improve slowly and took one step at a time. After 3 weeks i could manage to get down the stairs shuffling on my bottom. At 4 weeks i could walk down stairs but was very unsteady. At about 5 weeks i was back to looking after my son by myself with support. I saw small improvements each day and was much better by week 8.

I have made a complete recovery. I have not had it like this again. This was over 9 years ago.

I hope i never have it this bad again!!!

I went onto rebif at this point. I also saw a physio to help improve my balance.

Are you on a dmd? if so - how long have you been on it?

If you are not on one - then get on a dmd. If you are on a dmd then i would personally be asking to change to something else as the one you are taking has failed to stabilise your ms. Having such a nasty relapse whilst on a dmd may mean you need to step up from a first line dmd to a second line one. This is just my opinion but i feel you need to discuss it with the neuro.

I hope you see an improvement soon,

take care

Teresa.x

Hi Amy Going through similar myself, albeit 5 weeks down the line. The sickness stopped, but my balance, vision and mouth aren’t back to normal. Even typing this is hard with my vision. I was told by emergency drs it was likely Labyrinthitis but MS Nurse thinks it was part of my relapse. My husband had to take time to be with me, I was totally reliant on him. It scared the life out of me to be honest. I was quite panicky with it which is the worse state to get into. As said, just take a short amount of time at a bit. I am going yo start using a crutch as a walking aid, especially in unfamiliar areas. I can’t walk out on my own and still not driving. In relation to my mouth, lost a lot of taste and right hand side of my mouth/tongue is numb. Just know you are not alone with it. Please pm me for support if you want to. I was only dx in dec 2013 and been relapsing since March. Big love to you, it’s rotten isn’t it. L xx

Hi I won’t bore you with how long my balance/vertigo has been affected. I recently had tests ref my vertigo,dizziness balance and nausea the first with ENT who the Neuro referred me to in January, my 2nd with an Audiologist where 2hrs of testing went on. The Audiologist wanted to start me on exercises but played safe and referred me back to the ENT specialist to discuss with the Neuro. But at least I know hopefully something can eventually be done when they have finally stopped farting around not wanting to tread on each others toes! So maybe if you are referred to ENT this may help with your vertigo ,as suggested by other peeps it may be something they can start treating separately for you? Has your GP or Neuro prescribed anything to aid with your symptoms?Beta-Histine or Prochlorperazine the first one the Neuro took me off the second I still take helps with nausea for me but not my balance xx Hope ou get sorted soon as I totally can empathise with you xx

ENT may be better probably at distingishing if its part of an MS relapse or an ear infection*.*

Like a few others have said ask to see ENT as urgent.