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Feeling adrift

Ever feel like you may have just dreamt it?

I was diagnosed with MS the end of June and it was truly a bolt from the blue.

Although only 43 I thought I’d had a TIA as strokes are on both sides of my family and life had been pretty stressful of late.

I was admitted to the acute stroke ward for 10 days with numbness and tingling to my left side, visual and balance problems. After been assessed by the neurologist, lumbar puncture. CT scans and MRI, I was given my diagnoses. 3 days of steroids followed and then I was allowed home.

Since been released from hospital almost 4 weeks ago, I’ve been very lucky, I’m almost back to normal (well as normal as I’ve ever been) apart from improving but lingering visual issues and a bit of fatigue I’m fine. I’m not on any medication although that doesn’t really worry me at the moment. I’ve been discharged by the physio and O.T and now sitting wondering “what just happened?”

I’ve not seen anyone linked to MS and if it wasn’t for the MS society Website, I think I would have truly believed I’d just dreamt it. I do have an appointment for the end of August with the MS specialist. I’m left feeling a little adrift and wondering what happens next?

Hey Jude, (avoiding the obvious, however tempting) How are yer? I’m also 43, but diagnosed in 96. This peeked my interest as my cousin had a stroke (three mini ones) coupla months ago. He’s 44/45… Reading on here, that seems to be the way, drop the m.s. shit bomb then ‘off you go’. This takes a while to get your head around things. Took me about a decade! But this site is very helpful. Seems at least someone will have been there and got the T shirt. Take care of yourself, Andy. (Gonna be humming that evening now…)

Oh, meant to say - welcome to the group…

Thanks matey,

and I’ve probably printed the T-shirt for throes wearing it :slight_smile: (I’ll forgive the serenading lol)

It’s so surreal but its nice to know I’m not alone (although I wouldn’t wish it on anyone)

Hi Jude,

It is weird in limboland!

I started with leg numbness - walking problems in September last year. Long time passed - neuro appointments x 2. MRI spine x 2 Brain x1 Evoked watsit x 1 and now I’m waiting for next neuro appointment (October) finally with MS specialist. Was told by neuro in April that MS is most probable and I’ve probably had it for at least 10 years since my TIA at 49! That caused a night on a trolley in A&E then a 10 day absence from work whilst I tried to wake up properly. Since then I’ve had recurring balance problems, fatigue etc which got put down to TIA recovery or, when really bad, labrynthitis. Sometimes I’ve felt that I’m just going crazy but, no, there is something there - I’ve got the pictures to prove it!

I hope you continue to feel few, if any, effects.

Hi Jude. Another Newbie here. :slight_smile: I had a fall or two a few years ago. My leg just “gave way” and down I went. long story short, over 18months, there was xray, physio, useless out patient appointments etc. Last o/p appt. I queried why, if there was nothing wrong with my knee, was I now getting pins/needles in my foot since xmas and my leg felt heavy, oh, and my foot wants to turn in on itself so I end up trying to walk on the outside of it??? Better have an mri spine then, he says.

Months later mri spine done. I tell them I’ll be out of the country for 4 weeks and made an appt for when I’m back. Back from hols Sat morning, came down with a cold/sore throat Tuesday, went to bed really early, first episode of paralysis Tuesday night! Was right as ninepence after a while and wasn’t too concerned as had O/p appt next morning,Wed. Was certain they would tell me they’d found a trapped nerve or something in my spine mri. Nope, nothing.

When they heard of my paralysis the night before, an urgent mri brain was ordered. This was done on the Friday and then 4am Sat morning I had another episode. Hubby was snoring and had no idea. I managed the loo, and back into bed on my own, convinced it would be “nothing” like the previous one. Then I had a biggie at 8am. Ended up in A&E everyone believing i was a tia. I had a urine infection and was dehydrated so was being treated for that, until they got the results of my mri brain. No doubt it was MS. All this was May 25th. I’m still trying to take it in, although I can say I am grateful for the help and follow-up I have been given. I left hospital being told everything would be organised for me, and it was. Can you not get in touch with the Neuro secretary and ASK for the MS nurse contact number, for a bit more info?

I’ll try and see if they’ll give me the number tomorrow.

I feel really lucky that I’ve only experienced 2 substantial episodes (a week apart) before a diagnoses. but with that great thing called hindsight I can see a few things put down to migraine and trapped nerves. I don’t know the full ins and outs yet but I’m feeling hopeful at the moment just a little bewildered.

I hope your symptoms aren’t to bad and that your been looked after well.

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The episodes a week apart would all count as part of the same one, as, clinically speaking, MS relapses must have at least 30 days between the end of one and the onset of another.

Symptoms occurring more closely spaced than that are considered to be aspects of a single ongoing episode.

Tina

Hi Anitra. Can you explain a little more to me please? I had three substancial episodes in one week, and like Jude, was on iv steroids for three days. My neurologist came to see me on the ward, and after a brief examination, (squssez/push/pull, plus running a pen along the soles of feet) and read the mri brain report, she was in no doubt it was RRMS. She also said I’d had it “for some time”. I must ask how she knows this when I see her end of August! Because there is no 30 days that you refer to, are you saying mine could be a “single ongoing episode”?

Hi Poppy,

It is simply not possible to have three separate relapses in a week. A relapse lasts a minimum of 24 hours, but an average one lasts five weeks, and they can last a lot longer (I’ve had one lasting almost a year).

However long they last (even if it’s the shortest possible, at 24 hours), there still has to be the “clear” 30 days between the end of one and the start of the next for them for them to officially be counted as separate relapses, and that’s why you could not fit three into a week, or even into a month. Three “happenings” of some sort in one week is not three separate relapses, but all part of the same one. You can have better and worse days, and more than one set of symptoms, even during the same relapse. So feeling better for a couple of days, but then starting with something else doesn’t mean you got over one relapse and started another. It means the same relapse has multiple consequences.

For most purposes it’s pretty academic, but counting the number and frequency of relapses can become important when consultants consider which treatments are most suitable. It used to be the rule-of-thumb (seemingly not so strictly enforced now) that you needed at least two relapses in any two year window to qualify for any disease modifying drugs at all.

You couldn’t achieve a count of three for a single week, because obviously there couldn’t be the 30 days’ remission that applies before they reset the count. So all the incidents of that week, and indeed any others that occurred within a further 30 days would all be treated as part of a single MS episode, or relapse. If things calmed down and you had 30 good days (not necessarily symptom free, but no new symptoms, and no sudden flare-ups of the old ones), but then started again with a new symptom or crop of symptoms, that would be counted as a new relapse, so now up to two for that year.

You can certainly have multiple symptoms in a week, because a relapse typically consists of multiple lesions, which each have their own effects, but it’s not one symptom (or even one lesion) per relapse. A relapse can last a long time, and have multiple symptoms and lesions. E.g. you could have problems with both eyesight and walking in the same month, but that wouldn’t be “the eyesight relapse” and “the walking relapse”. It would be one relapse that happens to have affected both.

Your neuro may have been able to deduce you’d had it a long time from (a) sheer number of lesions, making it unlikely they’d all arrived recently, and/or (b) doing an MRI with contrast, which revealed a mixture of active (current) and historic lesions. If only some of them are active, but the rest are old, then by definition, they can’t all have got there at the same time. You must have had at least two relapses - one responsible for the old lesions, and one responsible for the current ones.

Unfortunately, contrast can only tell the difference between old and current. It can’t distinguish different ages of the old ones, so there’s no way of telling if they came from just a single previous relapse, or several. It would be nice to know, but technology just can’t give us that information.

When I discovered I had lesions at all, I asked the neuro outright: “We can’t tell how long these have been there, can we?”, and he admitted: “No.”

So really the only things that give a clue are how long the patient’s been having symptoms, and how many total lesions they have - more usually pointing to them having it longer.

Mine was a weird one, because I had comparatively few lesions (just six, at first scan, which I was told was good), but a long history of symptoms. This was interpreted as good news, because if I’d really had symptoms for years, but still had only six lesions, it was a sign it was either not very aggressive, OR I’d been recovering really well - either of which was good.

I had more than six by the time I was diagnosed, but they didn’t tell me how many, and I didn’t ask. I knew if they didn’t tell me, it could only be because I wouldn’t like the answer. So I’ve learnt a good strategy is not to ask anything I know I wouldn’t like the answer to.

Lesion count is not a very accurate predictor of disability anyway, so if I’d asked and been told a high number, I’d probably have panicked needlessly. How you feel is still a much better guide than an arbitrary count of lesions, though the latter still has its uses as a guide to disease activity, and whether a particular treatment is working or not. It’s not a good guide to how you should be feeling, though.

Tina

x

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Thank you so much for such a comprehensive reply Tina. Wow, you sure know your stuff! :slight_smile: Now, from your explanation, I can deduce that I probably had my first relapse about 2011, when I began to have trouble with my right knee giving way and stiffness, which resulted in me a couple of times. This was the beginning of my investigations. Another “incident” early 2014, resulted in me falling/ fainting and loss of bowel control in the small hours. This was put down to gastroenteritis by gp. A similar incident in April while abroad alone, I also put down to that. Then the occurrence that out me in hospital in May. My mri shows 2 plaques. I will now re read your post again. Thank you!

Brilliant Tina. I can’t get it all in one go so I shall read again. I have another question you might be able to answer if you don’t mind please. I’m mid relapse (about 2 months) in. How will I tell when it’s finished with me and I’m left where I’m going to be ?

Thanks

Janet xx

Hi Janet,

I’m so sorry, that’s one I definitely don’t know the answer to! LoL! It would be lovely if we knew how better is “better” and whether still to hope for any improvement, but without a crystal ball, it’s impossible.

One thing I’d say purely from personal experience is relapses can be very long, so don’t give up too soon.

I’ve still had improvements after nearly a year, before.

I think the general guide is if something hasn’t gone after a year, you’re probably stuck with it for life, but at two months, there’s still hope it’s a long relapse, and your recovery is nowhere near finished yet.

I’m not sure even a year is an absolute limit. I mean, I still improved after almost a year, and I don’t think I’m a contender for any records, so logic says there’s someone out there who still improved after a year and one month, and so on. Usually things you’ve had for a year or more won’t get better - but you know what? I wouldn’t put bets on!

It’s a funny old thing, this disease.

Tina

xx

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Thanks Tina

it definitely is a funny old thing. This is the steepest learning curve of my life.

Just when I thought I was doing ok the lhermittes said no you’re not. When that mellowed a touch the insects started crawlinground my legs and the hug started to threaten.

And the fatigue is driving me nuts.

What a joy it is. My spirits are mostly good though thankfully.

I’m having to learn about patience and it doesn’t come easily to me.

The best thing is being able to come here where everyone “gets it”

Thank you again

Janet xx