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Is medication the answer ?? Advice please

Hi and thank you for looking at my post .

i was diagnosed a little over a year ago and I’m fortunate enough to not have suffered symptoms to bad at this point, at my last appointment 6 months ago the specialist said he was happy to wait it out and see how things went as any side effects from medication were likely to be worse then my symptoms and that I should contact him if any change . There has been no major changes and iv not Realy felt the need to go back and visit him however lately small little symptoms are creeping up on me but things I feel are this far manageable - wobbly legs , minor pain in legs. To get the point , I don’t Realy want to take medication at this point and I’m happily in denial and ignoring the whole thing but I keep having awfull thoughts and dreams that one day I’m going to be in a bad way and told that as I ignored these symptoms and didn’t take treatment iv let things get so bad they are beyond repair . Realy I’m just asking for peoples views on this ? Are you supposed to report any new symptoms or just ones that are so bad u have no choice ? And also am I risking making things worse in the future by not taking meds ? Thank you in advance

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hi toni

your neuro told you to go back to him if there were any changes.

now these meds? are they DMDs (disease modifying drugs) or just meds to ease the symptoms, such as painkillers.

have you got a ms nurse? s/he would be a good first port of call.

find out which meds you will be offered then come back here for advice.

the decision to use dmd’s is a major one. the pain killers are not.

carole x

I have never been in the position of wondering whether to treat early - my MS was aggressive from the start, so I couldn’t get on DMDs fast enough. My only regret is soldiering on with a 1st line DMD for about 18 months longer than I should have done - it had clearly stopped working by then, and the ravages of those last relapses are permanent although Tysabri has kept things stable ever since.

But no one has a crystal ball, and things look much clearer (both to doctors and to patients) when viewed through the retrospectoscope! Even with that experience, I don’t think there is much use in a person’s trying to look too far into the future and then blaming him/herself for getting it wrong. We will always get it wrong to some degree, and it isn’t anyone’s fault. You just make you decision and then cross fingers and hope for the best.

It seems to me that you are describing two different states: (i) being quite ‘happy to wait and see how things go’ - and I mean you being happy, by the way; I’m not interested in the neurologist’s state of mind… and; (ii) feeling that you have been told to wait and see how things go and not being very comfortable with that. It does sound as though you have moved from the first state to the second, and I think that this indicates, at the very least, a further discussion with your neurologist.

It is important that MS-related symptoms and changes are noted by your GP and/or neurologist. Evidence in the record of how your MS is behaving might well lend crucial support to a case for treatment, if you do want to go on a DMD, now or in the future. So that’s another good reason to have the review/discussion.

Good luck.

Alison

The advice I was given by the first Neurologist I saw was simple:

If it lasts for more than a day - make a note of it.
If it lasts for more than a week - get on the phone to us.

When I was told that I qualified for a DMD, I put the decision off for six months (longer and I would no longer have qualified).
In that six months I had 3 relapses.
It took me just 3 years to go from EDSS 1.5 to EDSS 6.5 (one step short of a wheelchair).

You can figure out why I regret dithering for six months,

Geoff

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Hi Toni, I would say that if you’ve been offered DMD’s, think very carefully before refusing them. They are designed to reduce the amount of relapses & the severity of any relapses you might have, therefore slowing the progression of the disease.

I wish I had been offered DMD’s a few years before I actually was because my RRMS may have been slower to progress to SPMS. I had about eight/nine years of DMD’s before they were no longer good for me, I believe that had I started earlier I probably wouldn’t be at the stage I now am.

Good luck, whatever you decide

Rosina x

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There’s absolutely no doubt it is a gamble, whatever you decide, as none of us can see the future.

I was a borderline qualifier for DMDs. I declined - with my neuro’s full blessing, as it turned out, although I had been dreading the conversation! His reaction: “Good girl - that’s what I’d have done!” To his great credit, he never ever let that slip before I announced my preference, so could not be accused of trying to influence me either way. But there can be no greater peace of mind than hearing you have done what your neuro himself would have done.

I am NOT saying my decision is right for all. And my neuro is not anti-DMDs, so even he certainly wouldn’t claim it’s right for everyone. At the time, we did not have any way of being sure it was right for me.

So yes, I gambled. Over four years later, I have not had a confirmed relapse, so I feel vindicated. Four years of injections would not have stopped what didn’t happen anyway. Though no doubt, if I’d taken them, we’d currently be congratulating ourselves on how effective they were, and I’d have no way of knowing I wouldn’t have relapsed if I hadn’t even bothered.

All I can say is it felt right to me at the time. I’ve been lucky (so far) I made the right call. I could have “done a Geoff” and had three relapses in six months, and been sorry. Even if I had a bad relapse now, after 4+ years, I wouldn’t consider myself particularly hard done by, as my understanding is that some relapses are still to be expected, even with treatment, so one in 4-5 years would still count as doing relatively well.

A factor in my decision was that I was convinced (but cannot prove) I’d already had MS for years without treatment. So although it may be hard for some to understand, I did not feel any sense of urgency about it. If you’ve unknowingly managed for five years, ten, maybe even 20 without treatment, the case does not feel as strong.

I always promised myself that no matter what, I wouldn’t beat myself up over my decision. If you decide “No” you have to be very clear-minded that you’re not going on a guilt-trip if you have a bad relapse. My view was (and is) that I would never know if DMDs would have worked for me anyway, so if I did have a big relapse, I could never know for certain if I could have prevented it, or if it would have happened no matter what. So, I made up my mind from the start I was never going to nurse regrets over something I might have been able to stop…but also might not!

So far, so good. I’m not claiming to be “fine”; I’m ill and I know it, and I’m on a shedload of stuff for symptom relief. But I’m not convinced I’m any worse than I would have been with DMDs, for the simple reason I’m not having the relapses they’re meant to stop.

I’m not trying to sway anyone either way. I’m just putting the other side of the coin. Some said no and are sorry. I said no and am pleased. Make no mistake - if my MS had been much more active, there might not have been a choice to make. BUT it was very borderline, so I decided to play watch and wait - and I’ve got away with it for over four years.

Unfortunately, it’s one of those decisions that can take years to see if it was right or not (or you can find out very quickly it was wrong ) I do think you have to go with your gut, and not what anyone else (with the exception of your neuro) says or thinks. YOU have to live with your decision - not them.

Tina

x

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Thank you so much , your replies are Realy helpfull that is exactly what I need, real time information. The truth is

ashamed to admit it but iv no idea what my situation is. I was diagnosed during a bout of optic neuritis - MRI scan then lumbar puncture and I had a diagnoses . However from there Realy lost … Every one has been lovely but because of nature of the disease I can’t get any answers any where , every one just says " could be could not be , every one is effected different " so the truth is I don’t even know if my symptoms are even MS related and I wouldn’t have a clue if I was to have a “relapse” is it the presence of one symptom or would a very bad period be classed as a relapse . Are you classed as doing well If you have few symptoms or do you need to be TOTALY symptom free !! I’m just trying to give you an idea of what goes threw my head . My situation is that I had optic neuritis 2 years ago got a diagnoses 18months ago and since then Iv had little things like cramps in my ribs ( only twice in a whole year) I get numbness in my hands on a night sometimes but it’s gone by morning , I get slight blurry vision after a long day and shorting pains behind my eyes . My only constant symptom is a weird nerve twitch in my back and knee constantly - not painfull but irratating . Any ways does any one have enough experience to give me an idea of what MY situation in views as , is that good for an ms patient or should I be worrying and jumping on treatment . ARE THEY EVEN MS SYMPTOMS ? I’m by no means expecting medical advice and iv of course take any advice as just that . I’m not even looking for answers, I get that every one is different but with no one to talk to and nothing to compare to it’s Realy hard . At the minute the constant second guessing is my biggest problem . Thank you all so much I don’t mean to come across so naive , i honastly normaly pretty on the ball but this has be baffled

Thank you Rosina . I havnt so much offered any treatment . My neuro just said wel look into that and come back if things get worse , but iv no idea what to class as worse . Iv little experience caring for people with ms but the nature of my job means I only see it when it is in terribly late stages and I don’t Realy understand the condition so I struggle to know what’s classed as a “relapse” or a “bad symptom” . I hate this disease . Not because of what it does but because of what it doesn’t do , or might do , or might never do . Meaning any questions I ask are always met with " I can’t say yes or no because it’s effects ppl different" so I’m no further forward .

Oh that is worrying . , if you took them early then needed could they do any harm ? I’m just wondering are they a drug that can’t hurt , may not help but won’t make things worse - so have nothing to loose taking them ? In your opinion

To me your symptoms sound like MS flare ups, and depending on the neuro/ms nurse they either want to know, even just a phone call or they don’t really want to know unless the symptoms dont go away. I’m sorry to sound a little blunt but you can’t really compare MS symptoms with another person because like you already said, everyone is different.

Going on DMDS is a choice. You need to weigh up how any possible symptoms will effect your life, which ones you are willing to take, (I point blank refused Tysabri even when the doc was trying to push me to take it), and if you feel like they will help. Can’t predict the future so you kind of have to bite the bullet and decide what to do and live with your decision. in some areas you can go on DMDS at a later point if you decided you didn’t want them but once the damage is done, its done.

Not coming across as naive, confused and a little scared maybe :slight_smile: I think you need to talk to your neuro or GP and say to them what you have written here. It might put your mind at ease.

Thank you Alison , I suppose what I meant was I’m happy to plod along and by happy I mean , I’m not in pain or discomfort so I don’t need medication to control anything . However it’s my mind that is my worst enemy . Im constantly thinking "maybe I should take them it might help keep things away that I don’t even know are coming yeh " . I read up on it and I read things like. If you experience a relapse go see your gp but I don’t know what classes as a relapse . None of my symptoms are Realy bad so I don’t know if they are worth anything or not . MS is so confusing

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Thank you faula . You don’t sound blunt at all it’s exactly what I need . I seen my gp last week and ended Realy embarrassed when I said " do you think this is an ms symptom ?" And she replied " don’t be so dramatic what makes you think that it’s ms it could be a million things " I nearly didn’t tell her till my partner said " if you read her notes youl see she does have ms ." I hated it . My neuro is lovely but to lovely he doesn’t like to tell me anything because he Believes if he tells the patient what to look out for they will start looking and inevitably find things that aren’t there so he always says " if your happy I’m happy , don’t worry about things . If you have to ask then it isn’t serious because once you get a serious symptom , you will know about it " and that’s the extent of our conversations . Iv learnt more from you all tonight then I have from them . I. Can’t Realy ask many other people. I don’t know why but I’m so embarrassed by it iv only told my partner and he knows less then me

im going to ask for an ms nurse I think . I turned it down last time as I’m a nurse and was worried people from work might find out but think il go for it . A nurse may be able to help me understand more

o.o I would have said something to the GP if they had of said that to me. yes people with MS and also drs once they find out a patient has MS, they tend to blame every health thing that is wrong on the MS when it could be something else, but…she shouldn’t have dismissed your concerns. a big problem is that a lot of GPs dont really understand MS, so even if the problem is related to MS, they don’t know it can be. For example, I was having breathing problems, tight chest, weezing, lots of couching struggling to breath. confused the GP because she thought it was asthma and started treatment for that, didn’t help completely and we were both back to the drawing board with what was wrong. after me going off to do research, we decided it was asthma and the MS, (ms hug) so we both learned something, (she was pretty happy we figured it out and never once did she say anything like your gp did). sometimes you have to be very forceful, but polite, when you see a doc/neuro if you have concerns about your health and would like answers.

and I get what your neuro is saying, people can start seeing/feeling things that are not there, but its daft to say asking about a symptom means it isn’t serious. It can be if the person doesn’t know what is going on and sometimes a little bit of knowledge will put a person at ease.and what is serious for one person, might be shrugged off by another.

don’t be embarrassed, work people shouldn’t find out unless you tell them, should be confidential and if you never come to the point of telling anyone that is your decision, it is no one else’ business unless you want them to know. write down any questions/concerns you have when you go to see the nurse, he/she should be able to help and if you feel like they are not helping/rude/talk down to you, say something, but most of the MS nurses I have met are lovely people. you need someone to talk to in person. boards like this can be great, but nothing really beats talking to someone face to face :slight_smile:

ok enough with the rambling comment :stuck_out_tongue:

No honast you have been so helpfull. I am definatly going to get a nurse I think that’s what I need to get some idea. My partner is very textbook in the sense that he thinks if we don’t mention it , it won’t show it’s ugly head … I cryed when I got diagnosed and he told me I would make myself worse if I got upset so we do not talk about it at all ( he is a great man just not good with this stuff might I add ) So it’s been Realy nice to not have to pretend im in control and admit im lost . I see you all talking like old pros at this and I think it’s important that you know how much you help us “newbies” with your support . Thank you very much it’s the first time I ever felt so calm about it , that’s worth a lot . Goodnight

toni

it’s great when you get to the point where you feel able to add your two-pennuth into a discussion on these boards.

i’m really grateful to one guy who let me ramble on and always came back with reassuring advice.

he has vanished from here (might be to do with the revamp of the site) but i will never forget him.

you’re 12 months into your journey and still have lots of questions.

i’m 6 years into mine.

you need to have an affirmation phrase to say to yourself

“i’m wading through this sh*t but i won’t drown in it” and “i’m stronger than i ever knew” are a couple of examples.

take good care of yourself.

carole x

Hi again,

(Sorry, long!)

I honestly think you need to talk it over with your neuro. He cannot think your disease was too aggressive, or he would not have been content to leave things, and see how they go.

They may not like discussing what they personally would do, but a good way to find out what they really think of your case is to ask: “What would you do if it was you/a member of your family?”

I think, sometimes, they are too wary of seeming to interfere, but sometimes a patient (like you or me) wants direction!

I’m sure I’d have found the whole decision a lot less nerve-wracking if my neuro had said at the outset: “Well, in your position, I’d leave it, but it’s completely up to you!”

But I guess he thought it was unethical to say anything that could be seen as swaying me from a drug I was perfectly entitled to. So he only revealed what he’d have done after I’d already said I didn’t want them. If, on the other hand, I’d asked outright: “Doctor, what would you do?”, it presumably wouldn’t have been a problem, because it can’t really be “undue influence” if the patient says: “I want to know what you’d do.”

Honestly, I do wish I’d known he would agree with me if I decided to say no. I was really expecting it to prove highly controversial, and for him to try to talk me out of it. So I was getting myself all agitated and upset about it, only to hear him say: “Good girl, that’s what I’d have done!” So I came out happy that I hadn’t done anything contrary to medical advice.

ALL medicines have risks and side-effects. So the art is in finding the right balance between what you might gain, and the risks and side-effects you’d have to accept in return. Now if somebody has very aggressive MS, and is relapsing all over the place, this might be a “no-brainer” - the scales come down very clearly on one side - some effort has to be made to stop it, and the risks and side-effects, in context, are a small price.

However, if someone has been relapsing only infrequently, their relapses have been mild, and they have recovered well, the scales might be much more finely balanced. For someone who is having few relapses in the first place, a drug that sets out to reduce them may not have a major benefit, so the question about whether any risks and side-effects are “worth it” comes more sharply into focus. What is an “acceptable” risk, or an “acceptable” side-effect isn’t a concrete thing: it depends how desperate the situation is. If it’s very desperate, most people will accept higher risks and worse side-effects, but if it’s not at all desperate, they might be reluctant to accept ANY risks or side-effects. The same goes for the doctor too: they won’t want to subject the patient to any higher risk than the situation demands, so for every medicine (not just DMDs), they have to weigh up: “Will the likely benefits outweigh any possible downside?”

There isn’t a right answer: it’s a juggling act.

“Doing well” isn’t a medical term - even though I keep being told it by medics. So there is no measure of what “doing well” really means. I suppose they just mean - “compared to other cases that they see.” However, it definitely doesn’t mean: “symptom free”. I feel ill every day, and they know I do. If I had no symptoms, I clearly wouldn’t be on 11 prescription tablets a day, AND additional painkillers as needed! Nevertheless, apparently I’m still “doing well”. I guess that means low levels of disability, relatively stable condition (not relapsing madly, or showing an alarming rate of disability progression) - that sort of thing. No, sadly, it does not mean “feeling great”. Even people with quite minimal levels of disability can suffer badly from pain and fatigue, and not be “fine”.

Technically, a relapse is any new symptom(s) or a resurgence of old symptom(s) that lasts more than 24 hours, and isn’t accounted for by anything else - such as an infection.

So strictly speaking, a tingly finger could be a relapse IF it persisted more than 24 hours and you didn’t have a fever or a UTI or anything at the time. But if your relapse consisted of that and nothing else, it would be pretty unlikely to sway the treatment decision.

It is normal to feel tired and to have some symptoms (e.g. cramps, pins and needles) even between relapses. Some people do recover completely from early relapses, but it is more common to have some of these residual symptoms, and for them to get more prominent if you are tired or stressed, or even have a cold.

I would say the things you are describing are certainly MS symptoms, but I am less clear whether they are relapses, as they may be old damage that tends to make itself felt when you get a bit tired or stressed, and not a sign of renewed disease activity.

About half of all eligible patients say no to DMDs. That was a figure that surprised me, and again something I wish I’d known when I was deciding, as sometimes you get the impression you’re in a minority of one if you feel like saying no. Lots of people say no. Some of them, like me, with the full backing of their neuros - others will have gone against advice (which is still their right).

Have a chat about it. If he’s concerned about leaving things alone, I’m sure your neuro would have a duty to tell you.

My timeline is just my timeline. I’ve been “OK” for four years after saying no - that doesn’t mean you can generalise it to everyone. There IS luck involved. A big stumbling block is we don’t know how aggressive anyone’s MS will be in future - we only know how it’s been 'til now. That’s a guide, but not an infallible one. It has been known for people to have a serious setback even after many years of relative quiet.

However, in general, relapse activity is most pronounced early in the disease, and tends to taper off. Unfortunately, that doesn’t mean people get better. It just means relapses tend to become less of a feature, but disease progression still continues. It does have a bearing on treatment, though, because if someone has entered, or is entering, a stage of the disease where relapses are uncommon, they are unlikely to get much benefit from a drug that is all about stopping relapses.

There is not yet any drug (that I know of) that addresses the kind of progression that’s independent of relapses - that is one of the holy grails of MS research.

Tina

x

There was a time when the medical profession could be blunt about consequences …

It is 19 years since I started a job that took me 90 miles from home, and when I thought it best to transfer to a GP local to where I was during the week. They insisted on giving me an MOT (their health check). When I went in to see the GP after my third BP check, he looked at me and said:
“You have a decision to make: you can give up smoking or you can give up breathing”. Then he told me what my BP was.
I quit smoking that day!
A lot of medication and a multiple heart bypass, and I am still breathing.

Today, it would be more like “You might want to think about … …”. I subsequently met a nurse who was horrified at the way he had spoken to me.

Do not worry about your colleagues - they will probably get more supportive, rather than less.
Nurses can get MS just like anyone else can.
I have met two who can hold down a job that way - it just depends on your MS. If it is non-aggressive, you could have quite a few working years in front of you. What you will have to learn is how to manage the symptoms. That includes relapses, and that in turn means thinking about DMDs. Tina’s suggested question “What would you do if it was you/a member of your family?” is an approach that you can use on an MS Nurse just as well as on a Neurologist.

Remember - one thing you can always do is to come back here. Someone will always answer.

Geoff

So hard decision that i am through making these days! DMD or not! Happy to hear you finally made your decision. Good luck with this gambling. I have RRMS for 6 years but my attack have became more recently and i afraid so much. I have problems in my eyes. I prefer ni DMD but i need more help for this gambling