Advice on meds/exercise etc etc

Everyday living
1

Hello out there.

Here’s the thing. I have been diagnosed about 10 months now, and I came on here a while back as I was still coming to terms with the news etc. Here I am a bit further down the road and I have noticed some differences over the last year or so. The main two being balance and my legs. On a scale of 1-5 (5 being a ‘normal’ person walking ‘normally’ and 1 being pretty much immobile) I am never a 5 anymore which in itself has been the most frustrating thing. |I am pretty much a 4 and do have days when I guess I could describe it as a 3. I used to walk for miles with the dogs but now 20mins or so and I start to struggle. I have even bought one of those stupid hiking poles that I used to take the p**s out of the snobby ramblers having, but hey ho, it helps!!! I find that if I sit down after 20mins of walking just to recharge the batteries then I can go on again for that sot of period.On a day when it is clear that pehaps even 20mins may be a struggle I tend to try and restrict myself on doing too much, but those days aren’t that frequent. Yes I guess if I push myself then I get a bit tired but on the whole these are the changes I have noticed develop over the last 12 months.

I last saw my consultant in Oct last year but saw the MS nurse at Xmas nad have spoken to her since. Whilst there is no pressure or advisement to go on medication, I have resisted going on medication as yet as the symptoms I have noted is pretty much it. I have not had any periods where I feel incapacitated or had anything else - things I have read and been told about hence why I haven’t gone on meds yet. The quacks, whilst they sy it is up to me, it is difficult to make a decision like that. You almost want one of them to tell me to. Its almost a catch 22 situation. To be honest as well, I am quite scared to go on meds. (Tecfidera) The body adjustment and side effects do worry me.I just don’t know whether to put it off to see if and when my condition changes.

I don’t have an easy situation at home. We have a daughter with additional needs and so there is little spare time to do things that may help me and my condition.

We have booked a much needed holiday to Orlando in October. We do go every year (wife knows how t get there as cheap as possible and knows al the tricks etc) and it was only last August that I noticed real changes in my ability to ride the coaster etc. For the first time - I didn’t feel great coming off them and even stopped myself doing a couple of the more deadly ones.

Its still 6 months until we go again, and I know my legs have gone downhill since last year. I know with my balance as well, that the majority of the rides will be out of bounds for me, and I am a bit anxious about the walking.around. If I stay as I am then I can cope. walk for 20-30mins, sit have a rest and drink and then go again. I guess this also fuels the question about medication - Should I go on it before and will it help or am I overthinking all of this, and just carry on as i always have done and just make the adjustment I have said. Trying to get the time to properly exercise isn’t easy. I feel that would help, but its a difficult family situation to get out and do just that.

I am a natural worrier as you can probably tell!!! I know everyone is different but advice from anyone who can understand/empathise is appreciated. just don’t help me ven more confused everyone!!!

David

2

hey DJ

the choice of a disease modifying drug is your and yours alone.

set yourself a target of, say, having a decision made for when you come back from holiday.

fear of the side effects is understandable.

in fact that is what helped me to make my own decision.

i’d heard that rebif made you feel like you had flu so really didn’t want that.

(although i hear mostly good things about it now).

lemtrada and tysabri weren’t available and neither were the oral therapies.

i ended up choosing copaxone, although it was a daily injection it was subcutaneous rather than intra muscular.

copaxone served me well for 4 and a half years but then i had bad injection sites so switched to tecfidera.

tecfidera takes some getting used to.

you need to ask for more of the lower (120MG) tabs and ease yourself in slowly.

the side effects were horrible for me but if i had known i would have increased the dose a lot more gradually.

i’m still taking it and actually like it.

if you want more info on tecfidera start a new thread saying “help with tecfidera”.

paulo smythe, our resident tec expert, will very likely reply.

ask your ms nurse if she/he will refer you to neuro rehab.

you will be seen by a neuro physiotherapist and will be given exercises tailored to your needs.

mine came to my home once a fortnight.

exercise is important to prevent your mobility getting worse.

exercises for your core are of special benefit with ms.

pilates is great for this but try to make sure that you see a practitioner who understands ms.

i am going to pilates classes at the ms therapy centre.

if you have a wii get the wii fit and balance board.

i especially like this because there are exercises specifically for balance.

hope this has gone some way to answering your questions.

carole x

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OK, cards on the table: in your shoes, 10 months down the line from dx and already with a walking range that has declined to that of an old person? I would be sitting on the doorstep waiting for the neurologist as he/she arrived for work tomorrow morning, asking for something to damp down what looks like an alarming level of disease activity and level out a troubling trajectory of declining ability to get about.

Those who know me know that I am a fan of DMDs, having been on them for about 16 years and being grateful for how well I have stayed despite everything (which is saying something - my MS has been aggressive from the start and has done a fair bit of damage despite my best efforts). Still, my walking isn’t so much worse than yours, and I was dx in 1999. Whatever benign MS is, it doesn’t sound to me as though you’ve got it, quite honestly, so please do not assume that you have unless your neurologist has said so. Please do consider taking some medication to help you stay as well as you can. Once the damage is done, it’s done, as those of us who have had RRMS for a while know only too well.

Don’t hang about, please. Good luck.

Alison

1 Like
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I have RRMS. I wasn’t put on DMT when I had my first attack in 2000. Back then the main options were beta interferon or Copaxone, and some neurologists waited until you had two clinically significant relapses before prescribing DMT. Now they believe that the sooner you start DMT, the better the chances of reducing relapses and disability.

I suggest that you talk to your MS nurse about the options. Get as much information as you can so that you can choose a treatment that suits your needs.

5

It’s so interesting to read a post like yours.

I have been fighting and pushing to get my DMT of choice (Tecfidera - the strongest they’ll let me have) ever since my dx. In fact, I actually want Lemtrada, but hardly qualify for Tec so def don’t qualify for Lem. Honestly? I’d have stem cell if I could. Anyway, seven months since I should have been offered something, and five months since I was told I could have first line and Plegridy was suggested, I have finally taken my first Tec tablet.

My walking is now similar to yours, I can walk for half an hour, maybe, rest and carry on for a bit, but am exhausted the next day. I couldn’t walk for more than ten minutes last September following a big relapse in April, so am still hopeful that I can increase it.

My enthusiasm for treatment is because of my sister, who was dx 23 years ago when there were no treatments at all available. Later she was offered a beta-interferon trial but was quite disabled by then and turned it down because she couldn’t manage the daily injections.

Even though I think my dx is late, I am grabbing what is available to me with both hands, no one can predict what will happen to either of us, everyone is different. We have no way of knowing what difference treatment will make.

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Thanks to you all for coming back. It is interesting to read your comments.

I guess for me I only started to note slight differences around the autumn of 2015. At that time i was fine on the whole, just seemed to have the occasional instance of being a bit wobbly which wax put down to blood pressure. It took 8 months to finally get the referral and scan and diagnosis on 1 Aug last year. On holiday that same month, I did struggle a bit out in the Orlando heat which didn’t help. Here we are 8 months on and as I said in the original post I am a lot more wobbly/only can go for 20-30m without resting. But that’s really. I haven’t had any relapses as such, unless what i am experiencing is one massive relapse. I think this is why i have not yet decided on starting the meds, coupled with the fear of it. I guess having a disabled child and looking after her 4 nights a week when my wife works also comes into the equation. I have just come back from a good 30 walk up Woodbury Common with my ‘poles’ and wasn’t too bad. yes Im sat down now to ensure the batteries are re charging. Am i sticking my head in the sand to carry on as i am til at least after Orlando this year?

When it comes to diet etc. I have the sweetest tooth going. No Im not fat, and no i don’t do more than anyone else on takeaways etc, but I don’t eat cheese at all and I did see a salad once, many years ago!!! and had to run away quick. (really don’t like cold tomatoes,celery, lettuce…and is rocket all about?

I take a capsule of flaxseed oil and a Vitamin D3 a day and now drink caffeine free coke and tea bags. My Ms Centre doesn’t currently have a nutritionalist to seek further advise from.

I know will power is a huge past of all this, but I guess I’m still in that anxious/getting t grips with it stage.

7

Totally agree with Alison.

Make sure your travel insurance is up to date and aware oft changes.

8

Hi DJ

Like Alison, I am a big fan of attacking MS with DMDs. Unfortunately I’ve been unable to take 3 out of the four I’ve tried because I’ve got a rubbish body that tends towards things like elevated liver enzymes. The only DMD I could tolerate, was Copaxone. It seemed to stop working after about 5 years though.

So I’ve spent 15 of the last 20 years with no DMD. I started out OK, my relapses always seemed to take months and months to remit, so it is possible you are still in the process of remitting from a relapse. But I was fit and disability free for about 10 years. Then my mobility just gradually got worse, I started with a stick, then crutches (or one crutch and one husband!), then a walker and a very occasional wheelchair. But a humdinger of a relapse 5 years ago made me a full time wheelchair user. Within 3 days I lost the ability to walk, and I’ve not really regained it. I had some remission, but can only walk a few metres using an FES unit plus a walker. And that’s only about 3 times a day.

So although I’ve had 3 DMDs that have given me side effects that meant it wasn’t possible to continue, I’m still a firm believer. If I’d been diagnosed now, with all the drugs that are available, I would’ve taken one like a shot. And if I’d been able to tolerate it, 20 years down the line I perhaps wouldn’t be as disabled as I am now.

Clearly, this is my experience, and your situation (not to mention your MS) are different. But having a disabled child is (IMO) a good reason to take a DMD. The side effects from Tecfidera are for most people fairly easy to manage / live with. You don’t have to change your diet significantly, just sandwich the pills in between food.

You have to make your decision based on your own circumstances, but I would’ve thought the fear of disability trumped fear of medication.

Sue

9

There are always good reasons for trying to stay as well as we can be, and you have better reasons than most. It seems to me all the more important that you get on a suitable DMD to help get your MS under control (as far as MS can be got under control - it is a dangerous enemy, I’m afraid, and no respecter of one’s wish to support one’s family).

The good news for the day, however, is that eating rocket is not compulsory.

Alison

10

i’m a strange one.

i love those bags of spinach, watercress and rocket.

i may have chips on it (often)

bread and butter (always)

carole x

just do your own version of healthy eating.

veg instead of salad maybe

11

I get the impression that your main reason for not taking a DMT now is the potential for short term side effects. If that’s right, then it might be worth starting a thread asking specifically about this. I’m only two tablets in to Tec so can’t really comment, although fwiw no symptoms at all yet.

12

I’m recently diagnosed with CIS with sensory symptoms mainly at night though do notice my legs are buzzy if I walk any distance. I too am off to Orlando in 3 weeks and am a bit concerned with how I’ll be with the heat, humidity and walking. However, I’ve decided that life is too short and I’ll pace myself and see how it goes. I’m only eligible for the CRAB injectables at present and recently started rebif. I’m slowly learning how to cope with managing the side effects.

I agree with the others to get yourself onto a DMT asap as it could prevent a relapse that might occur anytime and further limit your mobility. You want to keep things as stable as you can. Most side effects are manageable using the great advice to be found on here and other reputable sites.

Good luck with it and enjoy planning your holiday as that’s part of the fun. Lots of hugs with your wife and daughter is good therapy too.