First it was ms, then it wasn't, now it probably is again!

To be honest I’ve made my peace with all that some time ago so when I do get a definited diagnosis I think it’s probably going to be a relief more than anything.

To start at the beginning way back in 2001 I started getting blurred vision overnight which got steadily worse until I couldn’t make out my own mates walking down a path towards me. I was around 23 at the time. By the night time I could only describe it as like an inner tube going on the television which I had heard was a sign of a brain tumour. I was obviously petrified I was going to die and that was one of the worst nights of my life. I have a lazy eye and so when the other eye decided to go on the wonk it left me almost temporarily blind. At some point I went to the eye hospital and was diangnosed with Optic Neuritis which was often linked to MS.

I came home, the eyes began to get better and I thought that may be it. Within no more than a couple of days I began to feel feverish, sick, had a horrible headache and was for want of a better word all over the place. My uncle took me back to the hospital where I admitted immediately and stayed the next week. During this time I was given all sorts of tests, the lp, MRI, electrodes in my hair. On top of that I had to have an enema as my bowel and bladder had deserted me.

I felt ok for the most part and began to feel a bit of a fraud against some of the other people on my ward.

In any case I went home where everything returned to normal over time. My bladder and bowel took a while and I was using suppositories for a bit. I don’t believe they ever went 100% back to normal. Also things in the bedroom took a while to come back and again they never recovered fully.

I was having regular 6 monthly outpatients appointments and it was at one of these where the Dr pretty much absent mindedly referred to my MS. I’m sorry what, I knew it was linked but nobody ever actually diagnosed anything. He just said, oh sorry I thought you knew. Yes it’s MS. It was just me on my own for that bombshell news so again I was rocked and shaken on my long walk and bus ride home. After informing friends and family that was pretty much it until 2009. Bang, 8 years go past and the same thing starts up again. First the eyes (much longer between recovery this time) followed by the entire central nervous system malfunctioning and attacking me. I was living with my now wife by this time who helped me through it rather than needing to be admitted. She would actually read pages from the internet for me.

I was prescribed some gabapentin and spent around 2 months off work recuperating. This time I had problems with mobility and pins and needles, numbness amongst other things.

Now my memory is understandably sketchy but I recall my consultant telling me at the time it was highly unlikely to be MS as it just didn’t fit. It would be atypical if it was. They then put Devics on the tavble which has similarities. No concrete diagnosis was forthcoming though.

So shoot forward to the present and exactly 8 years later (punctual) It’s happened again. Around mid Jan my eyes started failing which I went to the consultant about. He wasn’t worried, proclaiming it was just residual after affect of a nasty bug I had before Christmas. I should say at this point that each and every episode has come after I’ve just recovered from something horrible or other. So his point was when I got ill with stuff others get it affected me worse.

I went home and no more than a week later I could hardly walk, felt tingling all over and had pins and needles in the feet. I was also getting THE most strange and ridiculous vibration internally when I put my head down or turned suddenly. It was as if I had a pneumatic drill in there. So signed off for 2 weeks with Myelitis and another case of inflammation with my spinal chord. Was back taking gabapentin again also.Finally he prescribed me a 4 day course of steroids. He also arranged for another MRI. The steroids did their job, my mobility came back and over time everything else started getting better as well including the eyes which I didn’t notice when it happened. I just now notice I can read subtitles again.

I forgot to add that the accompanying bladder problems this time went full circle. First I could hardly, then I could hardly stop myself (could hardly feel I had anything down there and when I needed to go suddenly I just had no clue how to stop it. I woke a couple of times having leaked which was proper embarrassing. You think it’s sweat and then realise in horror that it’s not!

Had the MRI (a full hour while they did the whole thing without dye and then again with),and a follow up with consultant where he discussed those results. Still the same as last 2 times. They now want to do another lp where they are looking for something in particular. If they find them on the 3rd time of asking (3rd time for the lp too) they will move confidently towards diagnosis of MS. If they don’t well they’ll probably still diagnose the same just not as confidently! I will be atypical but nonetheless it will be MS. I don’t fit Devics anymore and fit MS better than other stuff it could be.

All this aside my upper body is almost completely as before this latest attack. But my lower body is messed up. I can’t urinate properly most of the time unless I am doing the other as well. I feel constantly hot all the way down my legs and have to keep checking I’ve not had an accident. I recently got soaked in the ice cold rain but it felt warm. Showers feel simply HORRIBLE when that water first touches my leg. I’ve not worn shorts yet but with warmer weather around the corner I can only wonder how that’s going to feel. It’s been around 2 months now since I’ve felt normal. I know there is no cut and dry but does anyone have a similar experience and how long did it last?

Sorry for the ramble but feels good to get it off the chest and that’s my introduction.


my own path to diagnosis was not the same as yours.

i recognise the bladder and bowel incidents though.

that is still ongoing actually.

most episodes either go away or reduce in severity so hang on in there.

carole x


It really does sound like you’ve been round the houses and back again. Weird that you’ve often had 8 year breaks between, I suppose you’d have to call them ‘flares’.

It does sound like your nervous system behaves in a MSy sort of way. Not that your final answer will in fact be MS, it could look exactly like MS and in the end be diagnosed as something else.

I do hope you finally get a definitive answer to what’s been going on with you for all these years. And if it is MS, at least you’ll be able to get some DMDs (disease modifying drugs) if you choose to. Also, to get some more specialist help with your ‘downstairs’ problems. It does sound like you should see a bowel and bladder nurse. You could probably also get some help in the bedroom department too.

I also hope it doesn’t take another 8 years for you to get that diagnosis.

And your final question, if it is MS, how long does a relapse last? How long is a piece of string I’m afraid. Sometimes a relapse can last so long you don’t know whether it’s ended or whether you’ve just learned to compensate.


I identify with you and that mis-diagnosis feeling.

I began falling when I was 45 and I`m 64 now.

Clinical presentation was typical PPMS. Test after test showed nothing.

But I was given a 95% sure dx of it.

Then 8 years later, my dx was changed to HSP…hereditary spastic paraplegia…very similar to MS and incurable too!

A year later, we went back to PPMS.

Another year on and it was HSP…for sure.

But genetic testing was done last September and I`m still awaiting the results. There is no-one else in the family with it.

Life goes on…I`m a full time wheelie, am hoisted, and have bladder and bowel problems.


ps welcome to the gang!

actually i remember my bladder nurse saying that if i was constipated it would affect my ability to pee.

ah! i thought, ‘so that’s why she gave me movicol all those years ago’!

apparently, there isn’t enough room in the abdominal cavity.

I’ve had movicol, fibogel. To be honest in the end they all seem to send me a little the wrong way.

I know exactly what you mean about compensating. That’s the way I felt about my eyes for ages and then recently I just sort of noticed I’m no longer squinting to see.

Feared as much on the time issue though. Just have to hope I feel normal enough to enjoy wearing shorts as we start to get some sun!

As for DMD’s (meds in general I’m guessing) Consultant pretty much happy not to go down that road at the moment due to how infrequent my attacks have been. To be fair I’m with him on this. The last thing I want to do is start a lifelong course of meds if I don’t have to. Would be nice to no longer have an unknown neurological condition though.

As for the bedroom dept well strangely enough (very strange for me) this is really the last thing I’m thinking of most of the time. With sensations being messed up I’m afraid to say it extends to that and on the whole really not very nice. As for normal circumstances well I’ve been prescribed Cialis for years now.

Just taken some fibogel tonight as getting sick of struggles shall we say.

I may contact the bowel and bladder nurse to see what further assistance they could offer, cheers.

i stopped using movicol because, like you said, it was making me leak the wrong stuff.

ok i accept that i wet myself a lot but draw the line on the other.