Hi everyone..

Everyday living
1

Hello good people of the forum,

I’m Richard and I’m 24. I’m a bit of an MS-noob in some respects, and there’s still some uncertainty over what I’ve experienced. I basically want to ask if anyone has any thoughts on the results from my latest scan (concerning ms - my latest ‘nervy’ health problem). It is definitely neuritis, I definitely still have it, I’ve definitely had it a long time (it’s seems chronic) and there is almost certainly no precursor for it that could otherwise explain my symptoms, i.e. I didn’t have a virus, unless maybe a sore throat can trigger all this, leaving one never able to fully recover…

It might be useful for me to share some of my ‘history’… Looking back, I have had neurological symptoms for years. I went through school just thinking I was grossly unfit and just meant to be that way, no matter what I did. I guess things got noticably worse around January 2011 when, I thought “gosh, I really should excercise more” as I was beginning to struggle up flights of stairs and couldn’t walk more than a mile wothout jelly legs, dizzyness, having to catch my breath and all the while unable to walk in a straight line. Late summer that year things really got bad. I can’t even remember it that well but to those who know me I was like a “zombie”, asleep all the time, and by November couldn’t walk or feel or wiggle my toes. At that stage I decided to stop ‘man-ing up’ and have a doctor come and see me. The GP’s initial diagnosis was Guilliain-Barre Syndrome, while the neurologist said MS and now my GP’s hedging his bets and is saying maybe a bit of both. For once I don’t know better!

Until late summer 2012 I was ‘out of action’, but my recovery to that point was steady and relatively rapid (few months) to the condition I am in now (can walk about 1/2 mile). People can’t immediately spot my predicament which is hard If I happen to be out in a busy place and I can’t change direction quickly enough and people just ram into me! My symptoms have not really worsened since it was at its worst, though some days are better than others. I find the avoidance of gluten helps a lot, after much chopping and changing of diet. I have looked at what many people have to say about MS, and it appears there are indeed many, many obscure symptoms and I think I have or have had basically all the ones I’ve heard of - but they seem to change. I do not take relapses, I’ve just had the one major relapse, and still I think I’m maybe “bullying” myself by being pushy with what I can do. I’ve returned to uni but I don’t know how I made it through when just 6 months ago when I was dizzy and mentally all over the place and could barely walk from the entrance of the exam hall to the chair! I do feel a lot of guilt about it all, and that maybe I’m ‘faking it’ or ‘copping out’ or something. Seperate issue, I digress…

To cut to the chase, here are the ‘highlights’ of my latest scan: " Some resolution of lesions identified earlier. Small number of new lesions not on previous scan which suggest new disease… No evidence of currently active disease. " So… Good, bad, good? Fasten my seatbelt? Really, any thoughts from anyone with any experience would be more than welcome and appreciated, and I look forward to reading all of them :slight_smile:

I will say a couple of final things, firstly, the scan was mid or late November. I got the results a couple of weeks ago and do not feel any worse, though I thought I did for a bit. I’ll put that down to Christmas diet, lack of sleep and exam stress. Also, I could have posted this in a number of forums but I thought this might be a good one to get started, as it has indeed affected my daily existence for some time.

Thank you all

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well i can’t diagnose you, i’m new at this too(nov 29th 2012) but have been reading a lot! your scan sounds like ms and your symptoms are similar too mine, i could walk fine up until approx 8-10 months ago, now it’s a bus/cab until i can get a mobility scooter!

if your still waiting for a diagnosis they call that ‘limbo-land’

give the ms society a call, they’re brill and they know more than us about ms!!

0208-438-0700

good luck mate!

ben

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Have you been diagnosed yet as after my mri the doctor sent me for blood tests to rule out other problems that might be causing inflamation on my nervous system after blood tests got the diagnosis about 6 weeks later I also thinking back had issues with balance and coordination for years but thought I was just clumsy it never seemed that serious so did not think much of it was difficult to cope with waiting for test result as you think all sorts could be wrong with you its just a matter of waiting and trying not to worry to much If you have had a scan and there was some that might be harmful i would guess they would get you in to see them sorry if this is not much help but I have only been diagnosed for 5 days

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. I always thought i was unfit like your self and once i got my dx (3 years ago end of feb) i stared think back and i relised that i was probable 14 when things first started going wrong and it had just taken me a mear 10 years to figure it out. I was lucky through the fact i had my first serious relapse in january 2010 and my second end of febuary and got my dx at this time so i didnt have months in limbo wondering what it could be. But there are some people that have been suffering for 20+ years and no one has still actuly said “right you have got MS” despite all sighns saying they do. Try not to worry your self too much tho as most people find stress makes things worse i know it dose for me. In your position i would be inclined to hasell my neuro non stop until you get a solid dx. But most will not say untill they are sure. Good luck with the uni stuff and just keep plodding on, what else can you do? James

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Hi, cheers for getting back folks

Ben, Matty this is where I am with diagnosis:

It does indeed sound like I have MS, I wasn’t told officially that I have it but I sort of was. The neuro just answered, when I asked for a professional hunch, “MS”, while looking me in the eye.

He looked ready to dive for cover lol but if I’m honest I was rather unmoved because I knew what was coming (just expect the worst constantly and occasionally be pleasantly surprised - my philosophy). My GP has however said he’s “only 95% sure” and my new neuro suggested it could be one off neuritis before my last scan there, but recovery has stalled since. Also MS goes its own way and can just stop in its tracks.

There is an element of ‘limbo land’ about it right now, but I just tell people I have MS unless it’s a protracted conversation where I have opportunity to explain all. I have also managed to persuade the GP that I need a blue badge so I’m happy to wait for now, but not too much longer…

Ben,

I’m sorry to hear that’s where you are with the disease but I hope at least you get the scooter most suited to you and it proves to be a blessing and keeps you active for a long while yet! Cheers for the number, I’ll get on to that.

All the best

Matty,

I’ve not had a blood test but I’m going to insist on one. I had opportunity maybe a year ago for one but I said I wasn’t comfortable because I’ve never had blood taken in living memory and I’m naturally a bit squeamish. However when I went for my last MRI I was injected with dye and the Dr missed the vein and so was injecting me a few times before finally finding it. My arm swelled up with dye, so now I’ve been through that I know there’s nothing to it! The GP told me a blood test “wasn’t really necessary now”, what ever that tells me - probably that he’s sure I have MS - but since it is good to keep tabs on my overall health and to keep my mind at ease about other things, I’ll definitely get one now.

That was much like myself, clumsy, bad balance and unable to keep a straight line when walking for as long as I can remember! Glad you got the diagnosis so promptly at least. If you’re anything like me you’ll be all over the internet for a while looking for any helpful info. What I would say is just watch what you eat and try and take out gluten and dairy from your diet and see if that helps at all. Removing gluten doesn’t ‘help’ me per se but it stops me feeling much worse. Anything really sugary or salty I avoid as it seems to make me dizzy. Pace yourself, making sure you get all the necessary sleep and keep stress to a minimum. You’ve probably heard all that already. Wouldn’t really bother with supplements, waste of money save for vitamin D3 (5000IU/day for me), and check out alpha-lipoic acid and see what you think. That’s what’s helping me through just now.

All the best

James,

It’s horrible isn’t it, to think you’re just unfit? There’s no hiding place for any schoolboy made to do beep tests in front of pretty girls! I was probably around 14 as well to be honest, when it all started. Maybe younger. I’ve only had the one relapse, and things have remained roughly steady enough since. It’s looking like something progressive for me. Stress definitely makes it worse, I have noticed that. I have also read stress maybe starts it off, and I have always been the ‘stressed out’ sort, with anxiety/panic attacks in the past also. As I say, ‘nervy’ things… Plod on I will, for as long as I can.

All the best