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Diagnosed today, but no treatment?

Hi,

After about 5 years I have finally been ‘offically’ diagnosed this morning. Feeling very relived and ‘happy’ if that is not a strange thing to say.

In the past 5 years are I have 2 clinical episodes (loss of ‘control’ of right hand side of body and loss of hearing in left ear, both of which ‘fixed’ by steriods), and the 3 MRI scans I have had have each shown an increase in number and size of legions. My neurologist at my local hospital says is is ‘clear cut’ MS and no furthur tests are needed, such as lumbar puntures etc.

Everthing I read says that the sooner you start on DMT the better, and my neurologist seems to agree, but she said current NICE guidlines state I must have 2 clinical episodes within two years in order to be eligibal for any treatment. My 2 clinical episodes were about 4 years apart, so I do not qualify, so she has basically sent me home and will send me a follow up appointment in about 12 months.

Is that right? Should I be pressing/fighting for some form of ‘treatment’, or should I just get on with things and hope that either I don’t have another ‘episode’, or if I do, it happens in the next year so I ‘quality’ for treament?

This doesn’t sound good, I’m going back for my diagnosis this Monday after MRI and Lumber Puncture, I have no medication and have had 3 relapses since June when I lost the ability to leave the house unassisted. I was expecting some kind of medication, I know there isn’t a cure but I am barely capable of walking to the kitchen, my vision blurs for most of the day and the dexterirty in my right hand is very poor during a relapse.

What counts as a “clinical episode” ?

My understanding is a “clinical episode” is a relapse, so if you get a diagnosis on Monday by having three since June would mean you “should” be eligibal under the NICE guidlines. My 2 relapses (so far) have been about 4 years apart, which makes me apparently not eligable for anything.

I see, of course I can’t ptove I have had three, It’s a huge effort to go to a doctor even between relapses and requires my partner take time off work so I just live with it. If you have been diagnosed and even prescribed steroids before it’s odd they won’t give you anything, the benefit of our “free healthcare” method of cutting costs no doubt.

I hthink Vitamin D3 and B12 are worth buying, I don’t think you can get them on prescription but a lot of people on here mention them.

Hi Ozrics,

The explanation of the rules you have received sounds completely correct to me, so I think your consultant is right that you do not qualify at present, and would have little chance of successful appeal. I think they do have discretion to override the criteria if they thought there was some special feature that would justify it, but on the face of the facts as presented, it seems to be a simple case of not qualifying, and I don’t think there’s very much you can do about that - except to be scrupulous about reporting any future relapse, as it may change your eligibility.

For what it’s worth, I am someone who was eligible, but declined. I did have two relapses in two years, and so technically qualified, but it is not my “usual” relapse rate, and I have currently not had one (excluding minor sensory stuff) for almost two years, despite not being on DMDs.

I honestly don’t think I would have done better on treatment, because I couldn’t have got any fewer relapses than “none”, and might well have had side-effects too.

So at the moment, I’m satisfied with my decision, despite it being regarded as “controversial” by some. I am always open to reviewing it, and if I suddenly started having more frequent and/or severe relapses, I’d have to reconsider.

But I just wanted you to know some people do get along quite well without treatment. A refusal at this point doesn’t mean you’re doomed.

Tina

P.S.

I meant to say that failing to qualify for DMDs should not mean you’re “not eligible for anything”. It has no bearing whatsoever on your eligibility for symptom relief, so if symptoms (pain, cramp, spasticity or whatever) are a problem, the DMD decision shouldn’t prejudice access to treatment for those, at all.

Tina

Unfortunately, the UK is not one of the countries that starts people on DMDs early

NICE are currently reviewing their guidelines for MS, so it might change (there is certainly enough evidence to support a change), but until then the rule is 2 relapses in 2 years.

I did read the other day that Rebif has been approved in Europe for patients with one relapse, so there might be some wriggle room to appeal if you use that decision. I’m not sure if I’ve got the facts completely right here, but here’s a link to get you started: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1901

(I think appealing NICE guidelines requires a court case, so I doubt it’s an easy process.)

Getting onto a DMD early has been shown to delay the onset of disability so (in my opinion) it’s definitely better to be on them than not on them if you are in the early stages of the disease. I think they say the benefit is highest within a couple of years of diagnosis, so you’ve still got time. (I wasn’t on DMDs for the first 8 years post diagnosis, and my MS stayed mild during that time. I do wonder if it would always have been mild if I hadn’t only started on DMDs when my MS got worse though.)

One thing you could ask about is clinical trials. There are always trials going on comparing new DMD users on different drugs - maybe your neuro can get you on a trial?

If not, make sure that you officially report any relapses and keep asking.

Karen x

Thanks for your reply. I certainly don’t want to be taking any drugs if I don’t need to, but don’t want to be not doing everything I can if I need to.

I guess it is all partly down to walking out of my neurologist appointment this morning with a firm diagnosis at last, and wondering “what’s next” as I had kind of assumed everything would start to ‘kick in’ after diagnosis, and I all I have is a follow-up appointment with the neurologist in about a year.

Hi again,

I can relate. It certainly feels like a bit of an anti-climax to be told: “Well, look after yourself, and I’ll see you in a year” after what seemed like a frenzy of diagnostic tests and appointments, doesn’t it?

But I think, after the initial surprise at the loss of momentum, I’m quite happy I haven’t seen the inside of a hospital for months, as I had more than enough of that while I was getting diagnosed.

I’m sure, if I did get into difficulties, help is at hand. There’s a number of the relapse clinic I could ring. But for as long as I’m managing OK, I’m quite happy not to have frequent tests and appointments any more. I wasn’t sure how “medicalised” my life would become, following an M.S. Dx.

I’ve been quite surprised it’s not very “medicalised” at all, touch wood. I realise a lot depends on whether you’re on any treatment that needs monitoring, and whether you get any problems that actually necessitate seeing anyone. As the answer, so far, has been “no”, I haven’t needed time off for a hospital appointment in ages.

I do occasionally see or speak to my GP, but usually only to get the green light to fiddle around with my medication. So far, she’s never opposed any experiment I wanted to make.

All the best,

Tina