Got appointment with MS nurse

New diagnosis and before diagnosis
1

Hi got my first appointment with nurse through and its not until 30th August, so they are in no rush.

I am a little worried tbh as when i spoke to the neuro he did not recommend i started any treatment at this stage, in his opinion it offers nothing and he prefers to treat as symptoms come and go.

Now from reading i understand many think treatment keeps away symptoms which was my initial thoughts and i think i would rather go down that route if possible.

I am only fairly mild at the minute my symptoms come and go seemingly sometimes with no trigger or sometimes due to tiredness or a bath.

I am worried though that if it gets worse my right hand wont work or my leg goes completely. I am learning to deal with many things memory and cognition are definately suffering but im at a stage where i can laugh and say it will come to me. I am getting really noise intolerant and cannot stand a lot going on but its the debilated bit at the min that scares me it could happen to any one of us at any time.

Tiredness now really affects my right leg to the point of it feeling like its in a concrete cast, my fingers at times cannot pick up toast or use a pen, it worries me that any rapid progression could be it ( i understand im probably not the only one who feels this way) but it all seems so slow. Next neuro appointment 6 months and MS nurse over 2 months i feel like they have just left me with little idea what to do next

Who do i see for treatment? do i need treatment ?can my GP deal with this now? (he initially refused as he wouldnt know what to prescribe until MRI) or do i just wait?

sorry for the questions im a little lost

2

Hi again,

As you’ll have realised by now, MS, being lifelong, is not regarded as a medical emergency, so there’s often a long wait for appointments.

There are two entirely different branches of treatment. One addresses only symptoms. Everyone should be eligible for symptom relief - the only qualifier is having the symptom. You don’t have to pass a certain frequency or severity threshold - it’s enough that it’s adversely affecting you.

The other prong does not treat symptoms at all, but is aimed at reducing the frequency and/or severity of future relapses, and (possibly) disability progression. Until recently, the standard drugs for this have all been injectables, and probably still will be, but there are just a few now coming along that are available either in tablet form, or as a monthly infusion, at the hospital, and may be prescribed in special cases, or where the older ones haven’t worked.

Unlike symptom relief, the eligibility criteria for any of these so-called disease modifying drugs (DMDs) are quite strict, and normally, you need to have had at least two clinically significant relapses in two years to qualify. It may be that you don’t meet this - either because your attacks have been less frequent than two in two years, OR because those you have had weren’t deemed clinically significant. Unfortunately, “clinically significant” isn’t defined, so neurologists may differ as to what they consider “significant”. Some treat it as synonymous with “disabling”, so if you’ve had attacks that were largely sensory, but didn’t really affect fundamental skills like walking or seeing, they might not be viewed as significant enough.

I think it’s important to find out from your neuro or nurse whether you just don’t qualify (in which case there’s probably little point arguing the toss, as rules are rules), or whether you DO qualify, but he’s simply not recommending to act on it.

I wouldn’t recommend this course for everyone, but I’m someone who was offered them, but declined anyway. I was worried I was risking the wrath of my neuro, so was surprised when he said: “Good girl, that’s what I’d have done!”

The past is not always a predictor of the future, but IF your relapses have been neither frequent nor severe, the benefits of DMDs may be rather marginal for you. I’m not saying they don’t have benefits - I just didn’t think it was a compelling case for me personally. I’m happy to say my neuro agreed, so thus far, I’m not doing anything that flies in the face of medical advice.

Perhaps your neuro’s similarly minded?

Tina

3

Thanks for the reply Tina, you have been a great help.

My neuro said that there is nothing clinically proven that an early treatment to prevent relapses works, they may not have had them anyway and in his opinion its better not to do anything.

At the minute i can manage my life, my right leg buckles sometimes and it feels at times like its made of concrete but sometimes its not too bad and i can walk.

My brain seems too seieze up at times for a few seconds and i slur and forget what im talking about, it was scary when it first happened but tbh im used to it now.

My fingers dont respond very well, i find it very hard and annoying when there is more than one thing and at times as awful as it sounds my wifes voice is really annoying but its not too bad at the minute and at least the double vision i was getting has disappeared.

What counts as a relapse?

As everything i have mentioned happens everyday, the severity seems to depend on how stressed or tired i get but it does happen when i dont feel tired or stressed (just not as often)

All these symptoms have happened everyday now for a few months, Only my balance and double vision seem to be ok again after being the first things to go

If what i am having now is a relapse will it stop or will it get slowly worse?? Or as ever does nobody know?

Is it normal for a relapse to run for months or is these symptoms likely a permanent everyday thing?

Would you recommend me getting something for my syptoms or leave it?

Sorry for all the questions, but i know little yet and without the web, this site and in particular your help i would feel quite lost

thanks

4

Hi ya, A relapse is the appearance of a new symptom (or the return of old ones) for a period of 24 hours or more, 30 days or more from the last known relapse (a raise in body temperature or a known infection not included).Usually there needs to be evidence of two clinically significant relapses in a two year period to qualify for DMDs. Relapses can last for days, weeks or months - there’s no telling which. In more extreme cases steroids may be offered and although they don’t work for everyone, steroids can help to reduce the recovery time of a relapse. Like all drugs though, they can carry side effects. Other things such as the heat (or cold), stress, bugs and infection can have an impact on our symptoms. These are not considered a relapse as such but more as an exacerbation of symptoms (although a relapse can follow illness). For example; humidity completely wipes me out, exacerbating my symptoms. My fatigue is far worse as are my legs, which are more painful and feel like concrete, my concentration /memory/cognitive issues are more prominent etc etc. If you have troublesome symptoms on a day-to-day basis, then it’s worth speaking to your nurse or GP as there are many different medications (not treatments) available which can make a tremendous difference once the right drug at the right dose is found for you. It’s also worth noting that as time wears on you’ll start to notice if anything in particular worsens your symptoms eg: heat, stress etc. It’s definitely having a look round this and the ms trust website at the various publications on offer too; they pretty much cover all subjects from symptoms, meds and treatments through to work, benefits and insurance. The staysmart website is also worth having a gander at if you find memory is an issue. What I would advise against though, is googling too much. Stick to official websites (such as this one) as there are an awful lot of low life’s out there ready to make a fast buck at the expense of others. Anyone claiming to have found a cure is one to stay away from, they usually involve parting with money!! Try not to over burden yourself with too much info at one time too, information overload can make the head spin! Take one day at a time and above all, look after you. Hope that helps a bit, Debbie xx

5

Morning, morning!

Your neuro’s view would be regarded as controversial by some - there are those here who’ve been gutted to be turned down for DMDs, and would do anything to overturn it. So in a way, I feel slightly guilty to have been offered them, but declined. But I did do it with my neuro’s blessing. He’s not opposed to DMDs (i.e. does prescribe them to other patients) and promised that if he believed it would make a big difference to me in ten years time, he’d be really pushing me (so I’d know if he thought I was doing a silly thing). But with things as they are, he didn’t feel he could say that.

So I guess it all depends how really set you were on receiving DMDs, and how much you trust your neuro. If you’re really very keen on having them, it might be worth biting back a bit, or even asking for a second opinion. However, if, like me, you trust your neuro, and neither you nor he are convinced there’s a compelling case for you personally (regardless what anyone else is doing), tyou might be quite happy to play it as he suggests.

None of this has any bearing on whether you should ask for - and get - help with symptoms. As mentioned before, DMDs and symptom relief are two entirely different aspects of MS treatment. Although I’ve turned down DMDs, I wouldn’t dream of trying to make do without help for symptoms.

There are lots of possible symptoms, therefore lots of different drugs that might be offered to help treat them. But common ones are specialist painkillers for nerve pain (ordinary over-the-counter painkillers won’t work for this), and muscle relaxants, to treat spasticity (over-tightness of the muscles). There are also a small number of drugs (just two, that I can think of - and one of those is very hard to get) that may help some people with fatigue. Like most drugs, not all of them work for everyone, and some may have unwanted side-effects, so it may take a bit of trial-and-error, to find the best for you.

Of course, if your symptoms are livable-with, you do not have to take anything at all - but I reached the point that wasn’t really an option. I still don’t take anything for nerve pain (not a major issue for me), but do take a lot of anti-spasticity stuff, and a lot for joint and muscle pain (not directly caused by MS, but can be a secondary symptom from the tight muscles, and altered gait and posture).

Have a chat about all this with the nurse - see if she thinks anything’s worth a try. DMDs can ONLY be prescribed by a neuro (and only some neuros, at that), but in theory, symptom relief can be prescribed by your GP. Mine’s always been a bit reluctant, though, and seems to want everything signed in triplicate by the hospital first - which can be a bit of a pain. Although she’s legally allowed to prescribe, I think she just lacks confidence, as she hasn’t had many MS patients.

Anyway, finally, “What is a relapse?”

Technically, a relapse is any new symptoms or exacerbation of old symptoms lasting longer than 24 hours and not explainable by other factors, such as infection, or overdoing things, or even just the weather being very hot.

Relapses can last anything from days to months, but a few weeks is average. Most of mine tend to be on the long side, but I’ve so far made a good recovery in the end, so don’t give up hope, just because it’s slow.

If the symptoms are happening every day, the chances are it’s all part of the same relapse. Stress and tiredness do tend to aggravate things, but it’s not a new relapse every time this happens. Probably just the same relapse all the time, but sometimes you notice it more.

In general, relapses DO get better - hence relapse and remission. They might get worse at first, hit a peak, then gradually improve. If you’ve had it a few months, I’d guess it’s already past its peak, so shouldn’t get slowly worse. But only time will tell whether you recover completely, or only 80 or 90%. Recovery prospects from early relapses are good, but the body’s repairs aren’t perfect, so over time, some residual impairment is likely, as more and more bits get patched up.

I’m sorry this is so long. I’ve tried to take all your points one by one, but realise this may have got a bit rambly and confusing. If it doesn’t make sense, please tell me which bit you need help with.

All the best,

Tina

6

Hi ya, I did reply to your post regarding DMDs and relapses earlier this morning, but yet again the post seems to have disappeared, I’ve therefore pm’d you instead. Feel free to PM me if I can be of any further help. Debbie xx

7

Thanks for your help, my symptoms are happening everyday but some days worse than others. They have happened now for about 4 months solid everyday.

Only thing that has stopped is double vision and balance after being first to go, Is 4 month normal symptoms? or in your opinion will this be permanent now?

I dont get pain except in calf, sometimes i have days where my toes bend which causes pain in calf muscle, its more of a nuisance than anything else and does come and go.

Having said that i do get a bit of pain on the top of my head and at the rear which seems to come on when my brain siezes up or there is too much going on

Btw my neuro seems to think that as nobody knows when you are going to have a relapse nobody can be really sure if the preventative measures really work, and that there are some grey areas around it. He also seems to think that exhausting medicines when they may not be needed might help you a little less when they are (build up a tolerance) needed.

My symptoms as i say i relatively mild so far and i suppose only time will tell actually what MS i actually have, althoughim wondering if its progressive as i have not had a day without symptoms for quite a long time now

Hopefully some good will come of the stem cell research that is going on, there is talk that it may be able to stop and even fully repair myelin in the future, so hopefully we all see that day

Thanks x

8

I’m very new to all this and have only just been diagnosed but I class everyday symptoms as MS symptoms but the two “relapses” I had were rather more eventful, with the first causing my face to drop, an incredibly itchy forehead that then became numb and spread to my thumb on my left, a very painful scalp on the left and sore neck, numbness and a very weak left leg. The second relapse was less eventful but consisted of very sore skin on the right which became numb from under my chest down to my right foot, confusion, lack of co-ordination and tingling on my shoulder blades and the back of my scalp.

My MS symptoms as I would assume they are I would say are my very achey left leg and hip, my slight left foot-drop and feeling of hot/cold skin areas which I feel on a day to day basis.

Not sure if I’m correct obviously but this is how it seems to me?

I’m due to see the specialist consultant in a few weeks to discuss drugs. I would love to avoid them but want to give myself the best chance possible although reading above not sure if that will be the case but have to admit I haven’t researched drugs much at all as it does worry me.

9

I’m very new to all this and have only just been diagnosed but I class everyday symptoms as MS symptoms but the two “relapses” I had were rather more eventful, with the first causing my face to drop, an incredibly itchy forehead that then became numb and spread to my thumb on my left, a very painful scalp on the left and sore neck, numbness and a very weak left leg. The second relapse was less eventful but consisted of very sore skin on the right which became numb from under my chest down to my right foot, confusion, lack of co-ordination and tingling on my shoulder blades and the back of my scalp.

My MS symptoms as I would assume they are I would say are my very achey left leg and hip, my slight left foot-drop and feeling of hot/cold skin areas which I feel on a day to day basis.

Not sure if I’m correct obviously but this is how it seems to me?

I’m due to see the specialist consultant in a few weeks to discuss drugs. I would love to avoid them but want to give myself the best chance possible although reading above not sure if that will be the case but have to admit I haven’t researched drugs much at all as it does worry me.

10

It certainly seems you are going through the mill, i wish you well and hope if you get the drugs it keeps away your problems as long as possible

Good luck and thanks for the advice

11

Hi there,

A bit briefer this time!

Four months is too soon to tell whether symptoms will be permanent. The fact some things (vision and balance) have improved suggest further improvement might still be possible. I’ve had a relapse lasting a year before. I don’t mean it didn’t improve at all before that, but it took a year to get as good as it was ever going to be.

I don’t think relapses and symptoms are two completely separate things. Relapses cause symptoms. If you are lucky, these will resolve, or at least improve, because the body tries to repair the damage. But the repairs are not always 100% successful, which means things get better, but not perfect. Over time, the number of things the body couldn’t quite fix properly tend to mount up, which is why many of us have some symptoms that are always there - but hopefully still not as bad as during a relapse.

Tina