Treatment

Hello everyone. Lovely forum - you are all so expert and supportive. I’ve been reading only for a few weeks but felt now is the time to join in if I may. I have certain things in common with Oliver!

I’m 62; started investigations into symptoms at beginning of October following a fall where my leg just gave way and I realised that this is what happens when I fall, about twice a year. The following day I dropped a mug in my kitchen and I noticed that my grip on it had involuntarily loosened. I could almost see it in slow motion. These things happened regularly, for years in fact, and I’d dismissed them. My thought was that I had to look into it; if I’d been older I could seriously hurt myself.

So visit to GP who said I needed to see a neuro. Saw the neuro, had MRI which showed lesions. Rather a shock as I walked into his office saying (and believing) 'you’re going to tell me that I’m really “one of the worried well”. ‘Actually’, he said, ‘there was something’ and proceeded to discuss the possibility of MS which I had ‘probably had for a long time’. He said he would refer me to his colleague who specialises in MS. Then another MRI (a contrast one) showed a further spinal lesion. Second neuro thinks I have RRMS which I’ve had for a long time and that I need to have it confirmed then he would want to start me on DMDs. The word ‘benign’ has been mentioned but I now realise that I’ve had all sorts of symptoms since the summer (now that I acknowledge it) and they have left me with some problems.Then I had evoked potentials (abnormal apparently) and lumbar puncture two weeks ago.

In conclusion, the results of lumbar puncture are in and I have an appointment this afternoon. I wasn’t expecting to see the neuro until Monday week, but pushed to see him earlier if the results were in, and they were. Fortunately I have medical insurance. No doubt the insurance company just want a firm diagnosis then they won’t pay out for investigations any more!

So - and sorry for the length of this - what should I be asking him this afternoon? He’s very nice indeed, and I have done a fair bit of reading up about MS since this whole thing started. I just want to know what the size of the problem is. I realise that there are many uncertainties with MS. DMDs reduce the number of relapses and mitigate the after effects of these relapses, right? And nothing can fix any damage that’s already happened, right? But I can cope with that. I think…

Thanks for reading.

Louise

Yes, all positive results and definitely RRMS. Neuro is going to put through an urgent referral to his NHS Clinic and start me on Tecfidera. I asked him about side effects and he said I should be OK but it’s important to take it with food

In a way I’m relieved to definitely have a confirmed diagnosis. I can live with that. However my (adult) kids are having trouble accepting that - as I understand it - there are no guarantees on what could happen in the future but that this is the best chance of protecting myself. How did everyone else get on with telling their families? My husband is OK and he has sat in the consultations, asked questions, and is very supportive. It’s just that all kids hate the idea of there being something wrong with a parent and mine are very concerned - probably more than I am now!

Louise

Hello Oliver,

For years and years I had symptoms but doctors just said it was in my mind so I never had any treatment, Now 40 years on I now got dx with spms. If I had known I would have had treatment and maybe I wouldn’t be the mess that my body is now. Don’t chance it, take the meds and don’t get worse quicker than you have to.

Janet

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By asking for recommendations and comments Oliver isn’t submitting the decision to public vote!

I hope you find some of the comments helpful Oliver.

I was diagnosed at 33, (9 years ago) was offered DMD’s within 6 months (I chose Avonex and recently changed to Tecfidera). It was absolutely the easiest and best decision I’d made in my life. I’ve been relapse free since I started DMDs.