advice please on treatment

New diagnosis and before diagnosis
1

Hi

Im in a pretty dark place atm and cant really get my mind around what the NHS are meant to do next. I was told last wek that my MRI showed multiple lesions consistent with a demylinating disease (or words to that effect). The GP, when I pushed him, has refered me for a spinal MRI and maybe a lumber puncture but Im not sure.

If the spinal MRI also shows lessions then I guess this means MS? If so, should I ask for DMTs straight away. The reason why I think this might not make sense is because my symptoms have been getting worse for maybe six months now and Im think that this indicates PPMS and that therefore DMTs wont help and so the risks (eg PAL) are not worth taking. Am I right about this. Tbh, Im finding it so hard to work out what should be happening.

Thanks for any advice on this. It would be really appreciated.

Bestw sihes
Rupert

2

Sorry your feeling in a dark place with things at mo. Has your GP referred you to a neurologist? Only they can diagnose ms not your GP. If it’s your first episode you may be diagnosed as CIS which still makes you eligible for DMDs. Don’t try and self diagnose or let your GP do it. Get referred to a specialist and go from there. MS Trust has an excellent decision aid to show treatment options.

I’m sure someone more knowledgeable than me will offer you some advice soon too.

3

Hi Rupert

I know you’re in a rough place right now. And you’re searching for answers. The trouble is that it’s kind of difficult to answer your question. To be honest, you should have been given information by a neurologist not a GP. And now, you need to see a neuro who’s seen your MRIs and can give you a better notion of whether you have RR or PPMS.

One thing to hold onto is that a relapse can take a really long time to get over. And it can seem like you’re stuck in the same place for months on end and that there is no remission on your horizon. And then 6 months have gone by and you suddenly wake up and realise you can feel your big toe (or the noises in your head have damn well shut the f up!).

So while you’ve been doing all your MS homework, you’ve also been scaring yourself sh*tless. You’re right that loads of the DMDs have crappy side effects. In fact I’m the living proof that many of the DMDs have side effects. But so far, I’ve had 4 of them, and while 3 gave me side effects which meant I had to stop taking them, I’ve had no lasting effects from those side effects. So in essence, I’ve had RRMS for 20 years with no DMD. And yes I’m disabled, but were I diagnosed today I could have started on a DMD immediately which, if it didn’t work or gave me side effects, I could swap to another. My problem has been that my MS started 20 years ago. There were no DMDs available then. My disability almost entirely came about because a) there were no DMDs to begin with, b) there were no other services available to help people with MS, i.e. physiotherapy, MS nurses, other drugs and c) there was no internet, which if course means that this forum didn’t exist. So I knew nothing.

And with regard to PML, it’s possible but highly unlikely these days. If you’re on Tysabri, you’re JCV status is checked you can only get PML if you not only test positive for PML but have the biggest risk factor. In which case you still can’t get PML for the first two years. It’s honestly not tremendously risky these days.

In any case, to begin with, if you have RRMS, you’ll be far more likely to be offered Tecfidera.

You could have PPMS. That is true. But you also have access to drugs to help with symptoms and physiotherapy, and you have us. You could become disabled regardless. In which case, you’ll have resources to help you cope.

You could have RRMS. That is also true. In which case you could suffer disabling relapses or you could take DMDs.

Whatever you have, there are drugs, nurses, support services, OT, physiotherapy services, continence services, rehab services, and us. We’ll be here.

Sue

1 Like
4

I know this wasn’t a reply to me, but Ssssue, that was a brilliant post. I’m going to print it and keep it handy for my dark days,

5

Hi Smurf

Thanks for your reply and hope u are doing OK. I think Ive had episodes in the past but not made the connection to MS. But Im not sure. Thanks for idea about MS Trust. I’ll look at that this afternoon.

Thanks again.

Rupert

6

Sue thanks for your amazing reply. I really appreciate the time you have taken. I will go off and digest what you have said. But it looks very useful. So thanks so much. Indeed, I think I’ll be refering to the info quite a few times in the next few weeks.

Hope you are doing Ok.

Rupert

7

hi rupert

there is also LDN Low Dose Naltrexone.

many people have had great benefit from it.

it isn’t available on the NHS because it is fairly cheap and no big pharmaceutical company has paid for the double blind tests required by NICE.

if you’re interested you need your GP (if he/she is forward thinking) or you need to see a private gp for your first prescription, after which your GP can carry it on for you.

it costs about £20 a month.

you could also try Hyper Barric Oxygen Therapy at your nearest ms therapy centre which seems to reduce inflammation and helps healing.

carole x