Forum

PPMS?

Hiya! Just been diagnosed with MS after being unwell since 2004, dx’d with ME in 2008. My neuro isn’t sure what type yet so has prescribed steroids on the basis that if I start to feel better, it is probably RR and I can have DMDs.

First MRI (Oct '10) showed a couple of lesions, so not enough for a diagnosis. Second MRI (Apr '12) showed a few more ‘small scars’. I was happy to have a LP but was told this wouldn’t be needed.

I don’t seem to have relapses or remissions, just very debilitating fatigue with the odd new symptom appearing occasionally over the years. Sometimes they go, often they hang around. My main problems (apart from the fatigue) are muscle pain, balance & bladder issues, stiffness when walking, eye pain, difficulty swallowing when tired and cognitive issues (the worst one in my book).

I guess it’s the lack of relapses/remissions that concerns me. I know that I’m very lucky to have not experienced anywhere near the problems that some people have had and feel quite guilty to be honest. I just seem to be experiencing a very slow decline.

I really don’t know why I’m writing this but my initial reaction is to go get them steroids and feel miraculously better and get my life back, in which case, I could be setting myself up for a fall.

Anyone willing to be the voice of reason?

Mags :slight_smile: xx

Take a look at this blog and decide if you really need steroids, which are pointless for PPMS.

http://multiple-sclerosis-research.blogspot.co.uk/2012/01/bone-damage-from-steroid-treatment-in.html

Something I find helps is ldn and you can read some reliable information at www.ldnresearchtrust.org

Hmmmm difficult one Mags. Have to say my symptoms have been very much what you describe & was dx with ppms in 2008. Slow decline with symptoms coming and going, or going up and down in intensity, except the fatigue is the one that is always there… but even that varies by the day. And also, like you, I was dx with ME at first.

I’ve never heard of a neuro prescribing steroids just to see if it’s rrms or ppms, but I can see there’s some logic there.

I think in your shoes I would check out the possible side-effects of the steroids and decide if it’s worth risking it.

Normally a neuro would monitor your symptoms over a couple of years to decide if it’s ppms or not.

Lots of people do have slow progressing ppms and also ppms can plateau and stay the same for years or even for rest of life. So it is certainly not the end of the world. If it has started slowly, fingers crossed it will continue slowly or even plateau.

Check out the links that Whammel has put on.

Good luck and welcome to our little ppms board. Please ask more questions if you have them.

Pat x

Thanks Whammel, it’s just to see if they have any effect on my symptoms to see if I have relapsing remitting or progressive. I’ll give them a whirl and keep my fingers crossed.

Mags :slight_smile: xx

Thankyou so much Pat. I shall check out the links. I think I’ll give the steroids a whirl though, just to see if they make any difference (& try not to get my hopes up too much).

Mags xx

Hi Mags,

Very similar problems to you. Tried iv steriods and they made me feel worse initially but then I felt a boost in energy. I have had them recently but orally and longer and again initially I felt an improvement in fatigue and stiffness but a few days after stopping them back to square one. They made no difference on either occasion to my mobility. It might be worth you writing down your symptoms and how you feel before and after and keep a diary for a few weeks because if Im honest it could have been that they just gave me a boost but for those few days I felt it was worth it due to my circumstances ie have children. Good luck. PS I havnt been given DMDs and told progressive ms.

Thanks Anita, that’s a really good idea. I only have them for 5 days so I’m not sure how long they will work for but fingers crossed! The pharmacist warned me to expect a severe attack of the munchies so I’ll get a few snacks in just in case and start them on Monday. :stuck_out_tongue_winking_eye: xx

Good luck Mags glad you have finally got an answer not what you want I know but at least you know whats wrong after all this time. I think I remember you from the old forum. I hope they help and you get DMDs as alll the research now says early intervention is very important which is why I think they revised the McDonald Criteria. x

Well, have finished my steroids (Methylprednisolene 500mg). :slight_smile: Had a couple of bad nights at the beginning of the week where I didn’t sleep but I have that in phases anyway. I also put on 5lbs so glad I only had them for 5 days!

Not really sure what is supposed to happen to be honest. I did feel a bit more mentally alert a couple of times but felt wiped out this afternoon and had to have a nap. Do they take a while to kick in?

Mags xx

Hi Mags, not sure how they’re meant to make you feel… but I would assume that symptoms should ease up, also not sure if they take a while to kick in. Perhaps post on Everyday Living?

5lb in 5 days! Blimey…

When do you go back to neuro?

Take care and have good weekend,

Pat x

Thanks Pat, feeling like a right bloater at the mo, lol!

Have to get referred back to neuro as last appt was private and he’s away 'till the end of the month. I don’t seem to have as much muscle pain atm but have more buzzies and boy am I tired. Still, could be much worse.

Hope you have a lovely wekeend too hun.

Mags xxx

Hi Mags, get lots of rest hon. Good positive attitude you have there (it really helps!)

Have a good weekend Mags and all the gang,

Pat xx