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On-going care - What to expect?

Is it expected / acceptable that 5-years post diagnosis of RRMS, no proper disease monitoring is being performed beyond an annual neurologist appoinment (which is perfunctory to say the least) ?

An initial MRI had been performed for diagnosis, but nothing since, so they and we have no idea what the current active lesion load or disease damage is currently. Can we request a GP schedule another MRI is done to see if the Rebif is having any effect / still working at all ?

Mmm, well as far as I know, a GP wouldnt order an MRI, it would be for a neurologist to do that. I could be wrong, but maybe.

I imagine you`ll receive a lot of replies from members here, telling you if they still see a neuro 5+ years after diagnosis.

luv Pollx

It’s my significant other who has RRMS (possibly now SPMS), we dont seem to have a regular Neurologist as its a different person each time.

The last appointment was really saddening, the Neuro rushed us out of there in about 10 minutes.

My SO wanted advice about moving from Rebif (which she’s relapsing on twice a year with less recovery each time) to maybe Gilenya, but the Neuro offered no help or suggestions about doing this.

We’re also tentatively considering more radical treatment like the experimental A-HSCT available at great expense abroad although they require current Neurologist reports and an up to date MRI. Has anyone asked for or received their Neurology reports?

Hello there,I’ve never had an NHS MRI as 12 years ago I paid for two private ones to hurry things along.The Neurolothingys at Walton Neuro in Liverpool say,“MRI scans are useful as a diagnostic tool only”. This may be true or could be money saving on their part

Good luck,

Wb

I’m guessing “acceptable” depends on the patient.

To me personally, yes, it is acceptable, because I don’t really want to be excessively medicalised and monitored all the time, for something that can’t be cured anyway.

I don’t want repeat MRIs,as a matter of routine, just to “see how it’s doing”, because I know myself how I’m doing, and MRI evidence actually tends not to have a very strong correlation with disability. Where the lesions are is more crucial than just the numbers game. I don’t really want or need to keep a running count, because the practical measure of how I am is more important, and I can tell that myself, without needing to attend for regular scans and checkups.

The less truck I have with the hospital, the more satisfied I am! I’m actually rather peeved about having to go later this month. I’ve been having trouble with one of my medications, and rather than try altering the dose, or switching me to something else, they’ve referred me for a somewhat unwanted physio appointment, which I’m less than ecstatic about.

You can get any of your medical records, on request, although there may be a small charge. I can’t remember what the exact current limit is, but it has to be proportionate to the actual cost of making copies for you - i.e. it can’t be run as a profit-making enterprise.

If you - that is, your partner - need an MRI for reasons unconnected with your NHS care or treatment (i.e. treatment you’re contemplating privately), then your best bet may be to pay for the scan privately. This could cost in the region of £300-400 for brain only, to something like £1000 if it’s full brain and spine with contrast. If you’re considering vastly expensive treatment abroad, then I assume a few hundred pounds up-front, for a scan, would not be a deal-breaker?

Tina

Hello! Your words interested me as I was diagnosed 13 years ago and gave up going for hospital appointments as there was nothing they could, or even suggested they might, do. Over the past year my relapses have become longer and more debilitating so I am back to see a consultant tomorrow. I’m nervous about the appointment in case it just starts another round of wasted appointments. I have decided to go in with my ‘shopping list’ of what I want and take control of my own treatment. Maybe that is the only way forward for your SO?

When I was still doing well on Avonex, my annual discussion with the neurologist took as long as it took him to say, ‘Hello, Alison, I see you still have MS, see you next year.’ And even that was a waste of time, his and mine, but the system seemed to insist upon it. When I read your original post, I thought your situation was similar, but your follow-up makes clear it isn’t - your OH is relapsing on treatment, and not recovering completely. In that situation (which I have been in too) it is, of course, not satisfactory for her to be fobbed off without a proper discussion about treatment options and objectives. Neurologists have off days like everyone else, and maybe this was one. But never mind, that isn’t the end of the world, and I think she should arrange to have another try, possibly having first sent a brief and factual letter to say what she wants to talk about and why. It is quite likely that the neurologist thinks she was perfectly happy with how things were going. Unless she tells the neurologist otherwise, he/she isn’t going to know any different, and isn’t going to be able to help further. Do encourage your OH to give it another go.

Alison

x

I think the annual 10 mins with a neurologist is pretty typical.

I had an MRI during diagnosis 17 years ago and I’ve never had another since. I’m with Tina in that I don’t want too much poking around just for the sake of it. I’m SP and I can document my own deterioration I don’t need empirical evidence.

I’m not sure how helpful an MRI would be to evaluate the success of a drug regime. I’ve never taken DMD so I know naff all about them.

I stick with the (for me) 6 monthly neuro visits just to keep me in the system not because I think it does me any good.

I think it’s quite hard to come to terms with the apparent abandonment that comes with having an incurable neurological condition. We are hard wired to expect medical intervention to be proactive and purposeful but with MS it just isn’t. On the whole you are left to get on with it.

Jane

I’ve found that I’ve only had contact when I’m having or had a relapse… And subsequent MRI from them apps although this time he said he didn’t need an MRI to know that there was activity going on due to the damage in my leg and his next step is DMDs. So I guess you see them when you need to or having problems, well that certainly seems the way at my hospital. I didn’t have any contact from diagnosis till the beginning of 2009 when I was pregnant and had a flare up of symptoms, then nov 2011 following a relapse affecting mobility and thereafter been six months check up until recently when I’ve suffered two relapses. I took no contact to mean I was doing well if I’m honest. Now reality after my dmd app is not as well as I was. Oh well. X

Me again.

Although I initially saw neuros every 6 months, I asked for it to be changed to annually.

None of my neuros has ever mentioned discharging me.

But I think they saw me as a challenge…even more so with the ISP label.

It is a rare condtion with something like 3 in 100,00 count.

Do you think I am still being seen, as ISP has relatively little known about it?

luv Pollx