relapse clarification, 1 0r severall

Everyday living
1

Hello all, cant sleep again. So hiding under duvet so light no effecting my partner who is happy in the land of nod. So jralouse. I have a question. A relapse is a new or returned symptom that lasts 24hrs or longer. So a new symptom, a few daus later another new symptom ans a week later anoyher new symptom, is that 1 or 3 relapses? Not that it matters, it is what it is, just curious. Also if i over do it i get ld relapse symptoms back, maube ones not had for months, maybe more regular ones. Do they really count as relapse. I just think as body gets tired gets a bit lazy with the detours that are in place round the scars so makes mistakes agan.

Thanks,

Sp

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Temporary, post-overdoing-it return of symptoms aren’t a relapse. That’s just when fatigue, or over-heating, or over-exertion or whatever, make temporarily more noticable the below-the-line damage that your system manages to work around when life is calm and cool. Nothing to worry about.

As for the other definition of relapse question, search me! In all the years that i have had RRMS, I’ve never really understood that one. A while back, I had a couple of veyr bad years when I had wave upon wave of relapses from late Autumn to early Spring. Just as the first symptom was fading, the one behind it would be peaking, and the one behind that would be firing up. It was like those pictures of a line of planes on final approach to land at Heathrow, one behind the other, as far as the eye can see. Was each winter one long relapse, or four or five different ones? When I was in the thick of it, this fine distinction never seemed particularly important! And afterwards I was just so glad to have got through it that I never bothered asking. But I’ll be interested in others’ replies to your question!

Alison

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The first neuro I saw said:

" If it lasts more than 24 hours, make a note of it. If it lasts more than a week - get on the phone! "

I heve heard the “One Week” criterion elsewhere, so I assume that 7 days is about the minimum time for a relapse to be considered a relapse.
If you think about Alison’s “wave upon wave” of relapses, the “7-day minimum” guide would suggest that you should be getting steroids (IV or oral) in time to get any inflammation under control - so whether these are one long relapse, or a sequence of relapses the treatment should be there.

On the other hand, seven days is a guide - and only a guide - so maybe one should be on the 'phone after six days …

Geoff

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I too am interested in this answer all i can say is according to my MS Nurse a relapse is a life changing event associated with i.e. an MS Symptom her example was someone getting hallway up the stairs and losing the use of his legs thus this was a relapse and in my case my relapse was when i went blind in my left eye , i am sure theres more to it but can only go on what she said thus to say im not really confident in her hope it gets sorted for you asap

respect sheep

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Looking back, Geoff, I wish I had reached for the steroids earlier, instead of insisting on toughing it out for months, always hoping that the latest problem would be the last. Both times I weakened in the end and both times it was a blast of IV steroids that stopped the rot. If I had been less stubborn, I might be walking better today. Ah well. One lives and learns. Eventually.

Alison

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This is for Alison - I never took steroids for relapses (just didn’t occur to me somehow). When I was prescribed my first set and got over the relapse really quickly, I asked my GP if I woulld be in a better state if I had taken steroids when I had earlier relapses. He told me that steroids get you to the end point, to the amount of residual disability that you will be left with after the relapse, quicker. They don’t make any difference to what that end point will be. Afterwards my neuro confirmed this - steroids can make your life easier in the short term but they don’t make any difference to the progression of your MS (so you wouldn’t be walking any better if you had taken them earlier).

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Thank you for this, SC. I know that this is the official view, and I am happy to accept that it is so for a specific problem (like suddenly a leg doesn’t work). In the case of my waves of relapses (thinking of them as a single process here), the thing I wonder is whether taking steroids earlier in that process would have quenched things then and there, and spared me the (hard-to-love) new symptoms that were already waiting in the wings.

But there’s no use me dwelling on it: it is as it is. Strange how hard to resist is the temptation to start picking at the 'what-if?'s, even though thinking ‘what if?’ is as good as arguing with the Pope as a definition of futility.

Thanks again for helping me off that most unproductive of hooks!

Alison

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I wish I knew the answer to this too. When I was first diagnosed, this wasn’t made clear at all (in fact there was a distinct lack of information) so when I had some new symptoms I just assumed it was all part of getting over the massive relapse and didn’t report it. Luckily I already qualified for DMDs so it didn’t make a difference to my treatment plan but I now believe there should be at least one or possibly two more relapses recorded on my medical file.

My last relapses were ‘slow burners’ and I did report having some symptoms playing up a month before the severe sympoms hit me. The initial symptoms were the kind of thing that happens when I’ve been exerting myself so I don’t think I could’ve done anything differently. Sometimes these things settle down with rest and sometimes they escalate. I do try to keep my nurse more informed now though whether it’s good or bad.

Tracey x

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Interesting replies. I never have taken steroids, once saw a gp away from home for bad case of on but did not know what it was, had hoped it would get better, fhen booked optitions thinking maybe pain was sight related, then when it kept gettjng worse saw a gp. Who phoned the nuro department at local hospital (i was very impressed) but they all decided id had it a month already steroids probably wouldnt help, but never see gp about relapses as just thought i be told yes you have ms and yes its likely its a relapse. So ive just always dealt with it my self. Was wondering as when i next see my consultant how many relapses have i had as to what drugs i qualify for. Last yr she recommended tysabri. But i didnt want anything. Was just thinking if i still qualified for it, or if not what, and doing some thinking and research to try and decide what to do. So should you see gp if you relapse? Never told anything like that before. Sometimes i feel very in the dark and nieve other times i feel i am the only one who has half a clue. All so confusing.

Sp

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Ha ha ha ha ha, see my GP for a relapse :D, that’s a good’un. Sorry sarcasm alert!

I love the fact that some of you can discuss MS wth your GPs and they can knowledgeably discuss whether having steroids would make a difference. Here’s my experience of my GP and relapses -

Relapse 1 - Phoned specalist nurse at clinic. Described symptoms (right leg seized up, painful calf, struggling to walk). She agreed I needed steroids and said she would fax protocol over to my surgery. Told me to book an appointment with GP the following morning so he could check for infection and prescribe steroids. The next morning (a Frday) I phoned the surgery, asked for urgent access app’t (the only way I could have been seen in the time scale), described the problem. Receptionist booked me in.

Half an hour later she rang me back to say I didn’t need the appointment, GP had said I needed to drop in a urine sample so they could check for UTI and he would then issue the prescription. At about 11.30 the GP phones to say my urine sample is clear and what are my symptoms and do I have a temperature? I wanted to scream at him! If he had’ve ruddy well seen me in surgery he would’ve been able to check me over himself and examine me, seen how bad my walking was etc!! He agreed to issue the steroids and said the prescription would be available later in the afternoon for me to collect. (If he had seen me in morning surgery he would’ve printed it there and then, saving me precious hours.)

Of course as they were high dose steroids, neither pharmacy in town had them in stock. One could get them in by the following lunchtime so I had to agree to that. My nurse had advised me to take them as early in the day as possible to counteract the insomnia which I knew was how they affect me, so I had to delay starting them until the Sunday morning. Thanks, doctor! By that point my walking was now a shuffle. Why couldn’t he have seen me at 9.00 am and given me the prescription then I may have had the tablets by Friday afternoon or Saturday morning at the very latest?!

Relapse 2 - Didn’t realise/want to admit it was a relapse. Three months later the right leg was much better but left leg started playing up with sudden extreme cramp and eventually seizing up, again making walking very difficult. I convinced myself that it was due to over-compensating for the right leg for the past few months. Saw GP and asked for referral to physio. He didn’t know what to do with me and wanted to give me more steroids. Told him I didn’t want more steroids because of the side effects. He faxed my neuro to ask for advice. I phoned specialist nurse who gave me a number to self refer for physio and wrote to my GP saying I had the right to refuse steroids and it was reasonable to refer me to physio. She also suggested further drugs for neuropathic pain if I should need them.

Surgery then ask me to make another appointment. GP offers me gabapentin which I decline as I want to try exercising. Physio tell me it will be months before I am seen so I do yoga stretches twice daily which freed the muscles and the pain. It hurt like hell to start with but I did a little bit more each day and I could tell it was working as my walking gradually improved. By the time I saw the physio 6 months after the referral, we only had my balance to work on.

Result - I don’t go to my GP re MS unless I have spoken to nurse first and she advises me on which Fact Sheet to take along with me. GP has other MS patients but doesn’t seem very knowledgable and has no interest in learning. Would it be rude to drop off some off the ‘For Professionals’ leaflets?

Sorry for the rant, I feel better now :wink:

Tracey x

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You know what they say about GPs? A third are good, a third are OK and a third you wouldn’t want to send your dog to. It sounds like you’ve got one in the last category, Tracey. Could you find a better one?

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We only have one surgery in town. We have a significant elderly population here which means that none of the GPs stay very long except for one of the partners. We have a steady turnover of locums. They all seem weary of the job and whichever one I see leaves me feeling as if I have wasted his/her time. The nearest large village is in the same muddle and won’t take anyone on if you are ‘out of their area’. My only other option would be to try a GP 10-15 miles away. The downside of living in a beautiful rural area.

The last long-standing partner left amidst rumours of self-medication and alcoholism. (Long before the current out of hours arrangement, you could never get him to make a house call at weekends/evenings and he was always at the off-licence on a Friday evening collecting a large box …witnessed it myself when I worked next door to the offy)

You can imagine how scared I was 5 years ago when I went with my first symptoms, expecting to be told it was just stress or something, and was told I needed an urgent brain scan!

Tracey x

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You poor thing - I mean GP situation. I once had a GP who was 40 minutes late for my 9am appointment (first one of the day). The really scary thing about this was the receptionist’s eerily calm reaction - it was obvious that he did it all the time. I assumed he had some kind of problem and changed practise straight away but this was in residential London, so there were GPs all over the place.

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It’s countered by the wonderful service I get from Addenbrooke’s hospital. All the staff in neurology are wonderful, from the receptionists right up to the neurologists.

I have had to go there so many times this year due to switching drugs and have seen other departments too and have yet to find a grumpy member of staff. It makes such a difference when they greet you with a smile and you can have a little joke with them.

The nurses even said I could ring for support after mum died - not about the MS but for emotional support. How good is that? They’re due to switch to Skype type appointments in the next year or so which will save me a long trek proving how they really do care about their patients.

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That is very different from my experiences at Walsgrave in Coventry. Most (but not all) nurses are lovely - can’t say same about the neuro or his registrar. People with MS who live round here argue about which of the two is worse!

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Glad to hear what you say abput the team at Addenbrookes. I am in the process of diagnosis at Hinchingbrooke but I think the neurologist is on outreach and is based at Addenbrookes - she did mention having further tests there if necessary.

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When I had to have the 6 hour monitoring for my first dose of Gilenya, my neuro came onto the ward early in the morning before his clinic to check all was okay. He popped back in the afternoon and came onto the ward with a smile and a ‘Hello, stranger!’ You just can’t help but smile back.

I took the team some Christmas biscuits and chocolates when I had my December appointment and, as I handed them over I lauged and said ‘As you’re all health professionals, I’m sure you don’t need me to tell you to enjoy them in moderation’. One of the nurses had a very quick come back with ‘Yes, we’ll have the chocolates before lunch and the biscuits after!’

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Sorry nyama nyama, I’ve taken your thread off at a tangent. I still don’t have much of an idea about relapses except when they can’t be ignored. I tend to ignore a lot of things and hope it’s just symptoms playing up.