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First relapse in over six years

I’ve been lurking in the background for just over a week getting myself comfortable with the idea of posting; I’ve never been one to participate online or seek outside support. While I’ve experienced changes in symptoms over the years, on 14 July I had my first actual relapse since my diagnosis in 2011. I’ve lost my sense of taste and struggle to express myself and find words (I called the ladder "the thing that makes it so I can reach up high).

I visited my doctor yesterday and am scheduled for an MRI tomorrow morning. Because we don’t know if the lesion is still active, I’ve not been given steroids. In fact, I’ve never had them. We also discussed changing treatment - I’m currently on Copaxone.

All of this knocked me back further than I expected, and while I know that I’m not alone in this, I’ve only ever talked about living with MS with my medical team, family and close friends. I feel like it’s time I change that.

Hi Cstretton and welcome! I was the same as you it seems and i haven’t been on the site long but I’m so very glad I joined!! It’s full of lovely people who try to help with whatever issues people may have when dealing with this awful disease by giving advice on their own experiences which makes it even better because you know your not alone! I hope you get the help you need but it sounds like everything is going in the right direction to makesure they deal with your recent flare up as best they can! All the best and take care! Laura

it’s a blow when you get used to a drug and then it seems to no longer be working as it should.

there are so many options these days.

stopped all my neuropathic pain killers and use CBD oil instead.

not on the NHS but not too expensive and it really works for me.

i came off copaxone and chose tecfidera.

trust your ms team, they are working for you.

let us know how you get on.

carole x

Do bear in mind that the aim of any of these drugs is to reduce the frequency

and shorten any possible relapse. They don’t necessarily prevent one happening!

If you’re taking copaxone for six years and have not had a relapse in that time, then I would think it is working and doing what it is supposed to be doing. I hope you have a good neurologist that you can discuss things with.

Hi

I agree with Poppy, don’t just assume that Copaxone isn’t working. In retrospect, I wish I’d stayed on it when I stopped taking it about 11 years ago. I thought at that time it had stopped working because after years of no relapses, I had a couple of small relapses. And due to the newer drugs coming on the market, I thought one of them would do a better job.

In fact I’ve been unable to take any of the other DMDs because of side effects. So when I had a humdinger of a relapse 6+ years ago, I hadn’t been on a DMD for 5 years.

If the relapse you are having now is mostly sensory rather than motor, or if it’s quite mild plus if the MRI doesn’t show a whole load more lesions that haven’t given you symptoms, then you could accept for the short to medium term that your DMD is working as it should. Then give it some time to see whether relapses become more frequent.

Sue

Hi cstretton,

I imagine that a lot of us had not thought about baring our souls on a public forum before we came here. I know I hadn’t.

But whether you would like a particular piece of information or just have a rant, you will generally find that there’s someone here who can help or is on your wavelength.

Some of us have even found friendship. So, if you feel the time is right for you, welcome to the club. You have nothing to lose, but I can promise you we will understand.

Regards.

Anthony

Thank you for the warm welcome.

I do use CBD primarily for the numbness and tingling in my hands; it doesn’t seem to do much for my spacticity though. I’m on the fence about changing my DMD. While I like the idea of not pricking myself anymore, I do feel that the Copaxone has worked as well as I could hope up to this point. I’m going one step at a time though.

Hi, welcome, this forum is my lifeline and the font of knowledge. I go back to my GP and specialist nurse when I have a question. The question I need most assurance with is a repeated one. I feel like a nitwit asking it but I do need it repeating. It is the answer they give about the long term benefits of treatment being different to the every day things for example, I was just ill for about 14 weeks last winter going in to the spring. I felt so ill and hardly moved. It confuses me about symptoms, daily living, loss of skills which may come back (and have) and being on medication. I had caught a virus of some kind which knocked my 10 sides of sideways. When it was over I had a long recovery - well most of this year so far and still have a daft right leg and a trixy foot. Anyway rambling now, I need assurance about when I get a virus or nasty symptoms, they can be just that and not related to M.S. So that is the questions I ask them, is this change and horridness due to M.S? They are very straight with me (as I asked this at the beginning) so will either say yes or no but mostly no. So it is difficult to fathom so I am with you, it is confusing and difficult. Good luck with the M.R.I. I have just had my latest one to check out my lesions. p.s. I always take warm socks for the M.R.I it can be a bit chilly in there. Let us know how you got on. Be sure to have a rest the next couple of days, I find even if I’m not thinking about it, the drive to hospital, the lying down in the M.R.I. the time and energy it takes, makes me feel about a hundred for a few days after so I stock up on netflix and good books. Oh and a treat, each hospital visit deserves a treat of some kind - very important! I usually buy a plant.

Oh forgot to add, I lost my taste for quite a while then my sense of smell. Thought it was something drastic happening, nope it all came back after a while and a very boring time of eating things and not tasting them. Now I can taste my burnt offerings and things stuck to the pan!

The results are in… no new lesions in my brain. My loss of taste and communication skills are likely the result of a pseudo attack/existing lesion acting up. I had been travelling the week before and the recent heatwave has done me no good. It’s just my body and mind rebelling against me. The next several days should be a bit cooler. I’m hoping that helps and that I continue to regain taste and words.

I did express the following to radiologist whilst being asked to change: I think only my bottom is metal. I don’t mean that my bottom IS metal, it just has a zipper. I’m going to stop talking now. What I meant was that my skirt had a zipper and that was the only metal I had on.

Brilliant news. Not that your bottom is made of metal (!) but that there are no new lesions. I should think that means staying on Copaxone is the best plan for now. It’s fabulous that it’s doing it’s job well for you.

I hope you get your taste and words back soon. Have a good, cooler weekend.

Sue

Excellent, rest now, good music, good tv, good books. I had a bed day yesterday and am finding the benefits today already. Still got dodgy bits but all the ‘weird’ things have stopped.

It is an art form knowing how to listen to the messages, if you are like me, you ignore them most of the time then something happens. We could do with a formula book - if a happens at b and c was yesterday = sit your harris down. If c happened monday and today is tuesday and e has happened - go to bed. If pam has a tremor on the right side and still piddles about in the garden = nitwit will fall over! If socks will not go on + tremor + brain fog = get back on the blasted bed. You know, that sort of thing.

Enjoy blood moon Friday. Keep posting.

I’m guilty of ignoring the messages and warnings; I’ve always been active and struggle with slowing down and stopping altogether. I did force myself into a couch day yesterday, put my feet up and watched tv. I even refused to cook, which is unusual for me, and instead ate salads and a lot of raw vegetables with hummus and fruit.