After a period of a slight limp which would come and go quite quickly, until November last year when my foot would begin dragging one day then be ok the next, until December when it became more of a permanent feature. So off I go to see my GP who referred me to a Neurologist, MRI scan a follow up diagnosis all done and two weeks ago confirmed RRMS. I’ve been prescribe a five day dosage of 500mg Methylpednisolone and then a further follow up a in few weeks time. So now the unknown starts to play on my mind, what’s does the future hold, likely treatments, long term benefits etc. Thanks Paul
Hi, crikey, you were seen and diagnosed very quickly! Thats not the usual experience, but having said that, Im glad you werent left to worry and get yourself all worked up!
Hope I can offer some info/advice hun.
I dont have MS (anymore!) but have lurked around here quite a while and gone thru lots of time in newly diagnosed and limboland, where Steroids are usually given when someone has a relapse, to reduce inflamation, which can cause the relapse.
Relapses vary immensely, both in frequency and severity.
You may be offered DMDs…meds to slow down the relapses. Some folk with rrms find their relapses widely spread and even non existant!
Have you been allocated an MS nurse yet? This person wil be able to answer a lot of your questions and concerns.
Hope this helps,
luv Pollx
To be fair, as a middle aged too busy guy, it took longer than maybe it should’ve to go see my GP, but some massive stress periods at work which resulted in me stepping away from it in the middle of November gave my the time to see my GP. My NHS initial consultation is still 3 weeks away! but my equally stubborn mother insisted I go for a private consultation because of pre-existing conditions, which is a contributor for having the MRI within two weeks and the diagnosis a few weeks later because of the Christmas period. I’ve yet to be assigned an MS Nurse so I’ll look forward to that next chapter. Thanks for listening Paul
Hi Paul!
I was diagnosed via a private consultation nearly 9 years ago now. It was a quick diagnosis like yours was.
Poll above said ‘i don’t have ms any more’ . I just wanted to clarify this - she struggled to get a diagnosis for several years and they thought it was ms but now she is diagnosed with another condition. I don’t want you to think that ms ‘goes away’ by itself (unfortunately it does not!)
There is a criteria you have to meet to get the dmd drugs. The neuro will decide if you meet the criteria and you can decide if you want to take them or not. You will usually be given an ms nurse who you will be able to contact if you have any problems inbetween your neuro appointments.
I decided to take the dmd drugs as there is evidence to suggest that they reduce the relapses is frequency and severity. I am on rebif and have done pretty well on it. Until very recently most of the dmd’s have to be injected but there is now new oral drugs just becomming available. There is also evidence to suggest that the earlier you start the dmd’s then the more success they have. (the more relapses you have - the more damage done) so if you can slow the relapses down then it can result in less damage and therefore less disability.
There can be side effects of dmd’s though and they don’t work for everyone but my opinion was ‘i have nothing to lose by trying them’. I am glad i did. I have ms symptoms but i have no physical disability at all yet.
The ‘ms decisions’ website may help. It gives you information on the dmd’s.
Everyone experiences ms differently so it’s difficult to compare yourself with others. Some have it very mildly (like me) and others have a more severe form.
Good luck
Teresa.x
Thanks Teresa Some good info in your reply. My neurologist made me very aware of the “it’s with me until my time here is done” and that controlling the relapses will be the course of treatment. I’m reading more on here that there’s also a small chance of my RRMS developing into SPMS over time, but let’s not think about that. So I was also taken back when Polix said she’s been cured. The biggest relief is now seeing the enemy, makes such a difference. I’m just not use to waiting, which is probably why I’m considered an early adaptor when it comes to gadgets and stuff, so a bit of a mind change (pardon the pun) is required by me to take a little more time over this. Cheers Paul
The time around diagnosis is a very difficult time and we all deal with it in our own way. My way was to stick my head in the sand and hope it would go away. Of course it didn’t! It took me a long time before i would come on here to read about what would happen in my future so you are already doing much better than i did. I was so scared!
Even though my diagnosis was 9 yrs ago i know i’ve had ms for at least 14 years - possibly much longer.
Yes you are right that RRMS can move onto SPMS but it’s best to put it in the back of your mind and live for ‘the here and now’. We might get hit by a bus before that happens or a cure for ms will be found before we progress.
The research into treatments/cures for ms is coming on massively now and i believe the cure is not too far away. This is what keeps me positive
I was diagnosed with rrms and am no different now from 9 years ago. Hit the ms hard with the dmd’s and you will have the best chance of keeping your mobility for longer.
Take it one day at a time and allow yourself to come to terms with all this at your own pace. One step at a time.
Teresa.
Hi Paul
Sorry to hear of your diagnosis but glad that you have found this website and forum - there is always someone here to offer practical advice or a kind word when needed to reassure you that you are not on your own.
I see that from your profile that you live in Wokingham. I live nearby and you will be pleased to know that we have three lovely MS Nurses in the Reading/Wokingham area. We also have an active MS Society Branch. I am one of the Branch Support volunteers and I cover the Wokingham area. I can send you a private message if you want to know more. When you do see your MS Nurse you might wish to put your name down for a Getting to Grips with diagnosis course. This is designed and run by the Support Team in collaboration with the MS Nurses and involves other health professionals, support agencies and includes personal perspectives from those living with MS. I will be chairing the next one in March/April. I understand this course is full but there should be another one later in the year.
We also have a social group, MSquared, which meets a couple of times a month and we always welcome new members. But if you don’t feel ready to meet other people with MS face-to-face just yet, that’s fine. We are here if/when you need help, information, want to exchange experiences with others who understand or just fancy sharing a few laughs over a glass of wine.
By the way SPMS isn’t the end of the world. I was diagnosed straight in with SPMS ( it’s a long story) and I’m doing just fine and since becoming involved with the branch have met many others with SPMS who are living fulfilling lives despite the minor or more significant limitations that MS brings.
Take care
Hilary x
Hi Hilary Yeah please send some info via pm I would be interested in seeing what’s local etc and when the time is right 