How can you know?

Everyday living
1

Hi,

I was diagnosed with MS in May 2013 at the age of 49. It was suggested at a specialist centre that it was probably PPMS because of my age but it could be a year before they could say. I had a third MRI in September and saw my Neuro today, she says there has been new activity and would like me to see another Neuro who apparently is more of a specialist of MS. I asked if she could say which type of MS but she said she wasn’t sure, the other Neuro might be better placed to say. I am a little frustrated, I am not on any medication although my symptoms are not bad compared to what some people have to deal with. I am concerned that if I delay treatment what will the effects be.

How do they make a diagnosis of the type MS? If it is PPMS what medication should I be asking for?

thanks for any help.

Jackie

2

Take a look at the unapproved low dose naltrexone and see if you think it can help. http://www.ms-uk.org/choicesldn

1 Like
3

As whammel just said might be worth checking out Ldn. Sparkly x

4

Thank you both for you suggestion, I will take a look.

5

If you want medication, you probably don’t want to get a diagnosis of PPMS. Do you ever see an improvement in your symptoms? My own view is that the PP/RR/SP divide is not at all clear and that good neuros will look at your symptoms and try to give you help with them, without narrowing your disease down more than saying it is MS. I am prepared for the flack that is coming my way for expressing this view.

6

Sewing chick - I’m with you hun. I think some cases are very clear cut as to PPMS - RRMS - SPMS etc but some are not. I was never given a particular set other than told I had MS.

I’ve had a few relapses - but only relapses to me. I’ve never had a ‘relapse’ severe enough to be called that - according to the doctors. But I have deteriorated in the 11 years since my diagnosis so what bracket does that put me in???

I’ve never been offered medication - so I suppose in my case it is a moot point

JBK x

7

I tried numerous times to reply this but keep getting kicked ou so here goes one last time…

The only benefit I can see in having your MS clarified is if you are RR you may get the option of meds. Others may say otherwise but I can only repeat what my MS Nurse tells me…“at this point in time there isn’t any treatment for SP or PP MS”

Until about four years ago I had been RR for approx 18 years, no treatment for me as I didn’t have/report sufficient relapses and I did just fine, had I been on meds the meds would be getting the thumbs up for keeping me well.

I am now SP and still don’t have the option of treatment…Such is life

If they give you any options regarding medication, take your time and do your homework…if they offer you a specific drug research it or post a specific topic on here regarding that drug and people will give you their experience of it.

I hope you keep well and just for the record I agree with Sewingchick and JBK

Jan x

8

I feel that for as long as the specific ‘brand’ of MS remains ambiguous, meds should be provided as if it were RR.

Let’s indulge in some optimism and proactivity by allowing newly, semi-diagnosed patients the chance to enjoy the benefits possible from certain meds.

Is there a risk factor associated with giving RRMS meds to someone with PP / SPMS?

My understanding is that the worst outcome is simply zero benefit is realised. (I am happy to be shown to be incorrect in this conclusion.)

9

Thank you for all the replies. I see a different Neuro if a few weeks for a one off appointment, apparently is more of an MS specialist will see what she has to say.