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Mixed emotions

Morning Everyone,

Bit of a long one this but please bear with me! I had my 6 monthly appointment yesterday, with my MS nurse. I was expecting the usual " hows your injection sites, your bladder function etc" but certainly not " we are stopping your Copaxone, you need to use the last of your supply & we need to cancel your next delivery ( which was due today, funnily, had a mad dash home to inform them as per instructed! ), course I was perplexed as to why & the nurse told me it was being stopped due to it now being useless, basically. When I asked her why, she told me due to the MS being SPMS, the drug is ineffective on my MS. Please don’t think I’m naive, I was told it was SP a few months ago, & I suppose I knew this day was coming, but I can’t, at the moment anyway, get my head round the fact it is now in black & white, so to say. I’m quite shocked by my reaction to be honest, to me it feels like being diagnosed all over again. My symptoms have been quite pronounced lately, new ones like banding ( their title, not mine ) & tremors in my arms have been quite disturbing, but I’ve pushed them to the back of my mind, however, this new change in meds ( changed pain relief ones as well ) have left me pondering on the reality of it all. I am certainly not a drama queen, ( hubbie reckons I’m cold blooded! ) but I can’t believe it’s hit me like this. I feel I’m in no mans land today, very out of character for me. Anyway, I’ve been given another appointment for next month, to discuss what options I have & I’m sure the impact of all this will have sunk in by then & I will hit it head on, as usual! Tracey x

Crikey Tracey, I guess we all kind of fool ourselves that as long as we are on meds and keeping a strong upper lip, so to speak, we are keeping it at bay. The reality of the drugs now being ineffective, must be scarey. I’m sure my day will come but until then i will pretend.

im sorry I have no real advice, and I can completely understand that you are stunned and having mixed emotions. I hope that a little bit of time will help, but it may just cause you to fester. Just absorb the info, focus on what you can do and be really kind to yourself, take care xx

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I’m sorry Tracey, it must feel just like re-diagnosis. So just like the way we habitually tell the newly diagnosed, you maybe need some time for it to settle in your brain and emotionally. I know you said it was a while back that they said it was progressive, but it often takes something like the change from the DMD to really sink in. Maybe you need to give yourself some slack and take the time to come to terms with it.

Sue

Tracey -

how do you yourself define SPMS and what actual tests did you have to be categorised as SPMS?

The specialist performed various tests, another mri to see increased lesions, told me I had drop foot, ataxia, relapses more & more frequent, loss of coordination, nystagamus, spasticity, need I go on!!! I define it as a pain in the arse, a constant loss of movement & control, falling over, constantly, & overall feeling like shit, is that enough Krakowan, or would you like to see my medical notes!!!

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i am not happy about your situation and i sympathise with you tremendously.

i am of the attitude that if a drug ‘might’ be of help, whilst not being a detriment, you should bloody well carry on with it anyway!

copaxone being ineffective isn’t necessarily a sign of SPMS, but of copaxone being less than 100%

i would demand the use of tecfidera for 12 months.

but with all this being said, there are things for those burdened by the SPMS tag and hopefully your next appointment will give you a plan of action that enables you to do more than simply give up the fight (therapeutically speaking)

the very best of luck to you. it is a shock to the system. please take your sweet arsed time to adjust to this nonsense news.

So sorry, Tracey.

That old knowing but not knowing thing. Weird, isn’t it? It takes me by surprise every time it happens, and it is not a good feeling.

Chin up.

Alison

Hi Tracey

You are in exactly the same boat as me.

I was on Copaxone then Rebif and relapses were just as bad on them as when I was on nothing. In fact, like you, I was feeling very ill every day with the MS symptoms while I was on both.

My neuro ordered an MRI which I had done and it came back with more lesions so really it was my decision to stop DMDs and to be honest I haven’t felt any better or worse not being on the DMDs, about the same I reckon. Just don’t have to inject any more. It was a bit frightening but I stopped the Rebif 6 months ago and I am doing ok. My neuro did say that Rebif is now used in patients with SPMS so might be worth mentioning Rebif if you still want to be on DMDs.

I was diagnosed 10 years ago and am now SPMS, like you.

Good luck.

Shazzie x

Thanks everyone, feeling a bit more so be it this evening! Will see what the MS team suggest in a month, have been struggling for the past 6 months, although things were going down hill a while before that, recovery from the relapses hasn’t been happening, just the progression of increasing disability, coming to terms with it now. Think it was the confirmation that was shocking, been plodding on from when they first suspected it, but now a reality. To be fair, the news wasn’t delivered coldly, just took me by surprise I suppose. Mind you, like you Shazzie, I will not miss my date every evening with the dreaded needle, not at all!!! or the all day vigil every month of waiting for the white van man, delivering my painful “friend”!!! What will be, will be, thanks again everybody, only 3 weeks worth left, yipee!!! Mind you, might just say b****r it & not use them up, although I would then feel guilty for wasting NHS money!!! Tracey x

Its a shock isnt it being told you are now SPMS i remember when i was told, i already knew though,i wasnt recovering from my relapses anymore,i was told i was SPMS WITH relapses,because i still have them,they have just got more severe with time

but now the new ms specialist has told me i am still RR,of which i very much doubt,after 23 years,i am far too unwell to be still RR,i even think i am progressive relapsing MS now,who knows what flavour of MS i have all i know is i am progressing and i dont need no neuro to tell me that.

Hope you feel a bit better about the new label now.

J x

I was being sarcastic May98! I have questioned how they have come to decision it’s SPMS, I have been monitored for over 12 months & my physical condition is deteriorating, with taking DMD. I have no recovery from the relapses at all, my mobility is considerably reduced, this along with extreme exhaustion & loads of other nasties. However, I’m going to see what they are going to offer next month, I’m not ready to lose the will just yet, I will take anything that will slow it down!!! I’m definitely not out, yet!!! Tracey x

I went through this a year or more back, coming off Copaxone “early” thanks to a Healthcare at Home screw-up.

The criteria used to assess me as SPMS were simple:
Gone from EDSS 1.5 (one stick) to EDSS 6.5 (two sticks) and had then been stable for a year.
It was the being stable that was the key.
The lack of relapses was not relevant (senior MS Consultant does not accept that extreme fatigue on its own - without any matching neurological symptom - is a relapse).

From this point:
1 - the junior neuro who was talking about Tecfidera was overruled.
2 - since stopping Copaxone I have had two"non-relapses" (last one in July) and will not see a consultant until next spring. An appointment for today was cancelled and put back to September; and then. three weeks back, that one was cancelled and put back to next April.

While both Tec, and Rebif, are available to people with SPMS (in theory) the actuality is somewhat different. What will never be disclosed is the effect on hospital budgets.

Time, methinks, to get re-referred to the hospital nearer home. At least I should be seen by a consultant this year, even if nothing changes.

Geoff

Sorry you have been so messed about Geoff, sounds a nightmare. I’m lucky they are seeing me again in a month, mind you haven’t had the appointment sent yet! Apparently, they have monitored my increasing disability, as I am not recovering, albeit partionally, from the relapses. I have gotten much worse over time with newish symptoms being more defined (how it was explained to me) I’ve gone from walking quite well to being very unsteady & lots of falls. I’ve burnt myself quite badly as well, due to numbness & quite severe tremors in both arms, really getting impossible to hold anything for long. Mad really, when I concentrate hard it doesn’t seem as bad! Tracey x