Forum

rrms to spms

Only been diagnosed with ms for 2 years and now i think it has gone to spms still cant have steroids till at least Monday but this doesn`t feel like a relapse had loads of crying fits and my legs do not want to work really had enough now any advice would be really appreciated new spms was coming but not this quick Raychelle

Hi Raychelle

I have been told I am S/P now, I am however still injecting Betaferon. I have had one relapse in the last year that has come back 6 times and doesn’t seem to leave me, (it’s all in my feet), I do however get very emotional at these times and sometimes find it hard to walk. I am going through a lull at the moment, at least my legs seem to walk. Very slowly but they still walk and I am feeling quite jolly.

We are all different with this MS, some of my friends seem to have been a lot better since they reached S/P, as they don’t have many relapses, I suppose they will be given the label of Benign MS eventually. I haven’t noticed a great deal of difference overall, as my progression seems quite slow. Hope yours is too.

Wendy
x

I am wondering why you think that you’ve become SPMS?

Normally the change to SPMS happens quite gradually. One of the things that neuros look for is a change in mobility over 6 months or a year. It’s not something that tends to happen suddenly.

Remember that relapses are often completely different to previous ones and some can last a very long time. I thought I must be SPMS last year, but nope, I’m in remission again (at last!).

I hope the steroids work really well for you.

Karen x

Thank-you I really hope its a relapse Rayhelle

Hi

I have SPMS, my diagnosis came straight in with it.

For me it has been a slow and steady deterioration in mobility over quite a few years. I first noticed problems with walking in 2003/4 leading to diagnosis in 2006. I am still able to walk but with a stick for support.

MS does vary hugely, not everyone with RRMS goes onto develop SPMS and only 1 person in 5 with MS ends up in a wheelchair, that means 80% do not.

I would chat to your GP/MS nurse/ neuro about what is happening to you. It may or may not be SPMS but from my experience SPMS comes on gradually over quite a period of time

Good Luck!

x

Thank-you hoping it is a relapse Raychelle


As you can see by replies on this forum - no two people are the same. And we all seem to have different reactions to most meds.
lts not a one size fits all. l have had SPMS for nearly 30yrs now. So for me - l have never had remissions - so reading posts from folk who are having relapses is not how my MS presents itself. My condition has progressed - but then l am also much older - with the problems age brings. Especially, the wear and tear on my ‘Good Leg’ which had been doing the work of two all this time. Now, l have osteo-arthritis in hip/knee/ankle - so l do not have a good leg to stand on. l have never been offered DMD’s - but l do take LDN
have a Sativex spray for help with pain and muscle spasms. l also take a high dose VitD3/VitB12 omega 3/ magnesium/Glucosiamine/
Chondroitin/ acetyl carnitine/ alpha lipoic acid/ lnosotil/ Zinc / Amitriptyline - So quite a cocktail. And l manage reasonably well - with a healthy diet. l rarely eat processed food. l find the more exercise l do the better l feel- mentally as well as physically. l have a power plate vibration machine/ eliptical trainer/ health rider and the ms society exercise dvd [excellent]. The LDN, l have been taking for nearly 3yrs.
lt certainly makes me feel more positive and alive. And l found out about it on this site when l joined 3yrs ago. l wish l had known about about it years ago. Life is not all doom and gloom - l make the most of what l can do and try not to dwell on what l can’t. l have friends who are ‘able bodied’ who do not live their lives any fuller then mine. l try not to dwell on the MS badge - and if anyone asks me how l am - l always say - ‘Great’ How are you? No matter how l feel.

Thank-you for your response i am trying to look to the positive side but it is hard i was told i would have savitex in September still waiting thank-you take care Raychelle