Well as per title… I have now had 5 days of feeling, well, quite well really I still wake up every morning wondering if I will be able to get out of bed or will I ache all day and feel too tired to do anything at all… plus a million other symptoms, but I am just so happy that I have managed to cook a roast dinner today, do some housework, and stay up to watch the closing ceremony of the olympics (wow!), and yesterday I even managed to get out on the back of my partners motorbike
IF I do have MS (undiagnosed yet) and IF this is what remission feels like , does that mean i will keep getting better each day, or will i be left with some residual problems. Im still twitching all the time, have some numbness to my face and neck, and my hands hurt etc… Will this stop? Will I get better and be able to function again?
I have my fingers, toes, legs and eyes crossed that I have had some kind of infection/virus and its going now (after over 5 months!). Well I will no doubt find out when I see neurologist again at the end of September, but Im hopeful
I hope everyone is having a good minute/hour/day/week/month
don’t try to overthink things. just enjoy the feeling well for what it is.
once you have a diagnosis, if it is ms you will be told which kind you have.
if it’s relapsing, remitting you will have periods of remission and maybe one or more relapses
but no use dwelling in worry land because it doesnt help.
instead read around and make note of what people are doing to get by.
before my diagnosis i had decided to try LDN and HBOT which i have done.
LDN = LOW DOSE NALTREXONE
HBOT = HYPER-BARRIC OXYGEN THERAPY
I also promised myself that i would not stop buying tickets to see bands, although i now thoroughly check the venues after a couple of unpleasant experiences.
and i have learned how to paint
in fact my life is pretty good, although i have lost some things, i have gained others.
it’s nearly 4 years now since my dx and i feel a better person for it even if i’m not as strong as i was.
take care, rest when you need to (even though it may feel wrong) and don’t worry
Hi Paula, Like you, I am not diagnosed, in fact my husband just keeps telling me it’s some kind of virus and to stop thinking the worst, but as we all know, that’s hard to do. I sat watching the tv last night and occasionally noticed numb spots on my face and arms which have since worn off. Most of my symptoms have eased but I’ve been left with a very stiff, numb hand and just feel totally wiped out. I’m due back at work in September but right now I’m really not sure if I have the energy for it. I’m also keen to know what remission feels like and how people deal with the fatigue. I realise it’s different for everyone but this uncertainty is driving me crackers. My first neuro appointment is Friday and then I expect it’ll be another waiting game while we go through the process of elimination. What stage are you st Paula? Have you had any scans or anything? I hope you had a lovely day on the motorbike, it was a lovely day for it. Carole - we’re going to a concert in a few weeks. I’ve been getting a bit worried about it as its a standing ticket and i’m not sure I’ve got the strength or energy to stand all night. Sorry - I know I haven’t given you any words of wisdom but I think it helps to hear other people’s stories and ways of coping. Have a good day everyone.
Hi I’m in the same boat as you the waiting game and the pain is immense I’m currently on gabapentin and baclophen and just finished a course of steroid and nothing seems to relieve anything and it seems like the nhs are dragging their feet. Hope you get your diagnosis soon
Sounds exactly like remission to me - feeling more normal and able to do stuff although still got some symptoms. I normally start feeling better before my symptoms get as good as they’re going to get, so hopefully you’re similar and yours will continue to improve too. And you’re not wrong to think about some sort of virus as a cause - it is possible after all! Fingers crossed that it is And if it’s MS and not a virus, well there are some brilliant DMDs available now plus loads of meds for symptoms as well as organisations and therapists, aids and people available to help. MS really isn’t the end of the world - life can still be good. Enjoy your remission I hope it’s a very long one Karen x
Hi Karen It’s been nice talking to others in the same boat and hearing that there are ways of managing things. As you say - it’s not the end of your life - just the start of a different type of life. Just wondered - is there anything you take to help with the fatigue, any tips to give me the energy to drag my miserable bum off the sofa- it all feels too much effort!! Thanks x
Thanks Karen - always so knowledgeable and positive.
Hairbear and Andrew - I have had MRIs of brain and spine, plus VEP. Am waiting to hear if I need a Lumbar Puncture, but am hopeful I won’t. Neurologist and GP both say it is probable MS as I have had nearly 3 years of feeling ‘not 100% well’ with weird symptoms, and I seem to have weird reflexes etc., I have also had Optic Neuritis for 5 months. I had a diagnosis of Fibromyalgia for 2 1/2yrs and they both wonder if it wasnt that at all. But I am ever hopeful it is a virus/infection and I will recover fully.
Today Im still not aching as much as this time last week, so Im still hopeful Im still on the way to recover
Gosh, we really need patience waiting for diagnosis don’t we? This is my 3rd set of “symptoms” in 12 months and I only have my first neuro visit this week. Are there any mess we can have while we’re still in limbo land? Glad to hear you’re feeling good today - hope things continue to move in the right direction for you. xx
I saw my neuro for the first time about 2 months ago, so I will hopefully find out what is wrong with me in the space of 6 months really. Onset of ON was April 2nd and next appointment is 25th September. Im pleased with that timescale as there are many people who wait for years to see a neurologist. I really dont know how people cope with long timescales as I have been so concerned about myself and my children (4 who are mainly adults now) are just so worried about me. Losing my independence has been the biggest nightmare for me, and asking my 17yr old daughter to help me get dressed was awful.
But, I am now on the road to recovery (think positively Paula!) and I should find out exactly what I am dealling with in about 6 weeks time.
Good luck with your neuro appointment - my neuro is a wonderful woman who spent nearly an hour with me doing reflex tests and taking notes. I really hope yours is as good and thorough as mine.
Thanks P, I’m typing up some notes today so I don’t miss anything out! Hubby is coming with me, he’s quite laid back about it all and I’m a bit nervous of voicing all my fears to him (his father had ms), I’m a bit nervous but also looking forward to it in some way. I know this sounds strange but it will be good to talk openly with someone who specialises in these kind of things and hopefully I’ll leave there with at least some ideas of what could be going on. xx
Have a look at the MS Society publications for a booklet on Fatigue. The MS Trust also do one. They are free to download or to order hard copy.
The key things are to pace yourself, rest BEFORE you get tired, exercise when you can (there’s good evidence that exercise helps with fatigue) and to not beat yourself up about it - your body is either busy fighting off whatever’s making you ill which doesn’t leave a whole lot of energy leftover or something is making you tired in which case there is little point fighting it; you need to learn to manage it instead, in addition to making sure you are as fit and healthy as you can be so there are plenty of reserves to draw from.
If you get a diagnosis of MS, then you can ask to try amantadine or modafinil (although modafinil is hard to get these days). Neither work for everyone, but are definitely worth trying.
Karen I took your advice… Was thinking of food shopping but decided to rest first. Lay down on the bed and ended up sleeping for an hour - lovely! I can’t remember the last time I ever slept in the daytime!
I still wake up every morning wondering if I will be able to get out of bed or will I ache all day and feel too tired to do anything at all… plus a million other symptoms, but I am just so happy that I have managed to cook a roast dinner today, do some housework, and stay up to watch the closing ceremony of the olympics (wow!), and yesterday I even managed to get out on the back of my partners motorbike 
And if it’s MS and not a virus, well there are some brilliant DMDs available now plus loads of meds for symptoms as well as organisations and therapists, aids and people available to help. MS really isn’t the end of the world - life can still be good. Enjoy your remission