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What's going on?

I need some help everyone, i have got myself in a muddle, not sure if i’m progressing or if this is just part of rrms, or if i’m freaking out unnecessarily.

Diagnosed in 2013 rrms after lesions found on brain stem and cerrebellum and awful relapses, rendering me completly useless. Made a good recovery and almost got back to my ‘normal’ self. Had a couple of mild-ish relapses since then, nothing too scary.

Have been doing really well symptom wise, had a bit of nerve pain and weird sensations but on the whole pretty ok. Started on rebif in July, seems to be going ok, a few short lived side-effects.

However i seem to have lots of new symptoms. I mentioned them to my nurse and she was concerned that i had so many so early after dx. Suggested i might need to move to another dmd, in her words “because of your age (29)”

The symptoms include: severly reduced walking stamina (2 mins and i need a rest), cognitive issues, tremmors, dizziness, numbness in arms and legs, persistant nerve pains, burning sensations all over, fatigue, mood swings and unbeliveable headaches.

I am seeing my neuro soon, nurse said to tell him all of this, but no advice on what to do in the interim, it was not discussed whether this is a relapse, the rebif or just life with MS. It was her concern that has really freaked me out i think. I’m on Gabbapentin and take vit d3 and b12 try and excersise where i can (getting too hard) and eat right (most of the time - i’m only human!)

I don’t know what i’m meant to do - feeling things are out of my control and don’t know where this disease is taking me. Finding it really hard going at the moment - especially with the boys off school. Any words of logic, reason and support welcomed, thanks.

Laura x

Hi Laura The only thing I can offer is support and a shoulder. One of the few things I have learnt about MS is to treat each day as it arrives and deal with it as it happens. It is such an unknown illness, I’m not sure logic or reason covers it !! It’s like every day is a new “surprise”!!! Sometimes a nice one, unfortunately, sometimes not as much !! Thankfully, you are seeing your neuro soon. Hang on in there and find something positive everyday to make you smile. The children should help with that !! (((()))) Catherine Xx

Hi laura this maybe that rebif doesnt suit you, I havent tried it myself but im sure others will reply and advise.how soon is your appointment you could ask ms nurse if there is a relapse clinic and see someone sooner. Xx sending hugs

Hi Laura,

I am in a similar position. Diagnosed at Christmas and have been doing ok but lots of new symptoms. I’m 30. Small things but when I add them all up I haven’t been relapse free for more than a week since diagnosis despite 4 lots of IV steroids.

Was at my neuro a few weeks ago and he’s not at all happy with things. He said my MS is far more active than he would like seeing as I have been on Copaxone since December.

I am booked in for another MRI of the brain to see if there are new lesions. And then I’m to go back and discuss changing my meds. I can’t change to Rebif or Avonex. I’d be looking at Gilenya or possibly the new MS drug Tecfidera when it is approved for use here.

I had bloods taken to test for the JC virus but the neuro isn’t considering Tysabri yet.

I think that more relapses = more long term damage. If they left us relapsing at this rate and we’re only 30ish, I’d say long term prognosis would be poor so they’re eager to get the relapses under control and not wait too long on one drug if it’s not working.

Don’t panic too much. We’re really fortunate that we have the various options available to us. I was really disappointed that Copaxone didn’t work for me as I had hoped to get a number of years on it before having to change to something stronger. But there are a few options available now and coming out soon. At least they are doing something about it and not leaving you to suffer.

Forgot to say, call ms nurse with questions you have, its what they are there for.

Just to add, while I’m waiting on the MRI and review neuro appointment, all I can do is wait so I’m not overly worrying. He left me on copaxone for now as he wants more info before discussing a change.

I think just carry on as you are if you have an appointment soon. Unfortunately there isn’t really much that we can do to control things. Waiting is hard but alas with MS, it’s a long term issue rather than short term. And anxiety won’t help it. Just go with the flow (easier said than done, I know!)

Hi Laura sorry to hear you’re having a hard time. I was told yesterday by the rebif specialist at my London hospital that rebif can affect people in this way. He said some people seem to have the symptoms straight from starting rebif and others experience them when titrating up to each level. He said that it can take months and months for the body to adjust and for the new symptoms to settle down and some people just can’t get on with rebif. Did the changes happen after starting your rebif and also did you notice them at the start or a few weeks into it?

Catherine - Thank you for your kind words, the boys do keep me going. I think your right too that reason and logic have no place in MS, i do remain ever hopeful of figuring it out one day though!

Zoe - Thanks, yes i have thought maybe it’s the rebif making things worse, the rebif nurse didn’t seem to agree with me though. My nurse is on holiday this week as fate would have it, will see what the neuro has to say - although he is not a specialist.

Meme - Thanks for your reply, sounds like you are having it toughh too. My biggest hurdle is my neuro is not an MS specialist, so he cannot perscribe a stronger dmd. I am going to move to the specialist soon but figured if i have a routine appointment in 3 weeks might as well see him first - he could at least order MRI’s etc. I am trying not to panic, like you said we are lucky to have these options avaliable to us. Think i had just imagined getting on with my life once i started the rebif, possibly built it up to be a miricle drug which i know is not the case - blind hope strikes again!

I am also confused because i don’t feel i have had back to back relapses just lots of little symptoms that have been getting slowly worse. Thanks for your help, would hate to have to do this alone :slight_smile:

Laura x

Hi Karina,

The symptoms had started before the rebif - i just assumed they were transient symptoms. I saw my rebif nurse on Monday and she was adament it was not the rebif, she suggested they would come and go as opposed to being a permanant fixture. Im not sure i guess I will have to play the waiting game and see what happens - nothing new there!

Laura x

Hi Laura When I was on Beta Interferon many many years ago now I had to come off it as I was having more relapses on it than off it, maybe thats the case with you too. It dosent do for us all but I hope theycan give you something that will help you. Sue x

My rebif team told me different yesterday they said that new symptoms with rebif can be ongoing ones as opposed to on and off and can seem like a relapse but its more often than not the rebif - especially within the first 6 months of starting rebif. Having said that it could’ve been a relapse just before starting the rebif and could be just taking its time to go - especially with new drugs working their way in your system (which I was told could take 6 months for your body to adjust fully). It could be worth seeing if the hospital have any cancellation appointments for the actual ms specialist and if you could get into see him. Failing that when you see the neurologist next ask him about getting another MRI scan like you said, but also ask him to speak to his manager (the ms specialist) and see what he suggests you do now. He can’t offer the next DMD options but if he refers you to his manager (an in hospital referral is normally quicker from one neurologist to another) then the ms specialist may be able to offer you a wider choice of DMD’s.

I was the exact same when I was told he didn’t think the Copaxone was working. I was really upset at that because I had thought once diagnosed and on DMDs I’d have years and years relapse free before having to worry about it again. But unfortunately while that is the case for some, other aren’t as lucky and don’t get the right treatment for them first go.

I’m the same in terms of relapses as the severity of the relapses is much less than before starting the DMDs. It’s the odd tingle here and there, the slightly numb leg, the weak arm that comes and goes, the mild optic neuritis and blurred vision.

I am still working and going out with friends. I have days out with my daughter and I clean the house, cook the dinners. I go for walks and basically from outside my life looks normal. But I fall asleep on the couch some days after work, I have to adapt certain things (like using my left hand to hold the phone in work because my right arm gets tired)

It all seems so insignificant and for the most part I’m so used to it that I don’t even notice it.

But my neuro said “how many weeks have you been completely symptom free since diagnosis” and my answer was none. There is always something and as soon as one symptom goes, another takes it’s place. So he reckons the copaxone is reducing the severity of the attacks but that the MS is still very active and I need something stronger to supress it a bit.

Karina - Thanks for your help. Think i will ask neuro to refer me on to the specialist or speak to my nurse about arranging the transfer - it is time to stop playing around and get some proper help. Im not ruling the rebif being the cause out - an MRI could help get to the bottom of things. Hope your feeling better today?x

Meme - Yes that’s it exactly, the little things keep building up and up and you stop and think this is not as it should be. Last night i was trying to take my necklace off - my arms were so weak i had to lay down and do it, couldn’t hold them up long enough. I have never felt more pathetic :frowning: I get the blurry vision too, it’s so easy to forget all this stuff, like you said it feels insignificant. I just need to see a proper specialist and see what they think and try not to breakdown in between! Let me know how you get on with things? x

Thanks Sue, i hope so too! x

Hi Meme,

It’s a rotten disease MS. When you are diagnosed, the disease is active (or else you wouldn’t have been to see a doctor) and it takes quite a while for it all to settle down.

I started on Rebif quite soon after diagnosis and I reckon life was just about ‘normal’ about 5 months afterwards. It did take 2 years for the relapse rate to really slow down.

The odd thing is, some 13 years later, despite some dreadful relapses, I haven’t progressed. You have to be patient with yourself and not panic too much - which is all very well to write, but not worth anything when you suddenly develop a tremor.

I was really scared for the first year. The activity did slow, but it can take 2 years for your body to recover and Rebif does help to slow the attacks.

I hope this helps a bit,

Ibu

xxx

Hi ibu, not sure if your post was meant for me, but good to know your doing well on the rebif.

It’s the waiting game that never ends isn’t it!

Laura x

Whoops! It was sort of aimed at you and Meme, but you aren’t on Rebif. I’m not sure about the waiting to get better period with Copaxone.

My worst relapse was a year after starting Rebif, so there’s lots of time - although neuros today seem to be less patient and offer the more powerful drugs quickly and that’s a whole new dilemma.

I hope things improve over time.

xxxx

I am on rebif, started in July so not been on it long. Will see what the neuro suggests. Think your right about some neuros being impatient but if something else could help more I’d be willing to give it a go! x