gpeps 25/03/13
Last reply 4 years ago
From Relapsing Remitting MS to Secondary Progressive – questions please!

Hi all,

We’ve got Prof Alan Thompson from the Institute of Neurology in London lined up to respond to your questions about the transition from Relapsing Remitting MS to Secondary Progressive MS.

Professor Thompson is a world leader when it comes to progressive MS and this is your chance to ask him the questions you might have about when Relapsing Remitting becomes more progressive.

Please leave your questions below and in April we will ask him your questions on video.

Thanks,
George

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serankin
5 years ago

Does the recovery from relapses tend get less as you approach the Secondary Progressive MS phase?


stumbler
5 years ago

LDN seems to be the only treatment option available to Progressive MS patients. Whilst its efficacy is not fully proven and it would be an “off-label” usage, why is it not even offered even though it is easily obtained privately? Surely, the potential benefits, at a cheap price, would condone the “off label” usage, if the patient insists?


gpeps
5 years ago

Is there any evidence to suggest Tysabri, or any of the other ‘new’ line of DMT’s, can benefit MSers with secondary progressive MS? Are there studies ongoing, and if so, what are the indications?


f3ng5hu1
5 years ago

I think for an rrms diagnosis the lesions minimum are 9.
How many lesions for a progressive diagnosis?

If it’s more complex than just lesions (which i presume it likely is) could you explain the method used in which they deduce secondary progressive.


EmS
5 years ago

Is it thought that the advancements in DMD’s will reduce the amount of people who eventually progress to SPMS?
Thanks, Emily


cameron
5 years ago

I was told at dx that MS is a ‘wide spectrum’ condition and that when it becomes progresive it doesn’t necessarily mean that it will become very bad. Is this really true?

i have a derivative of ms which means i get only only one big lesion the last five years i have had two relapses what does this mean for my progression?


norfolkgal
5 years ago

How long could you just have RRMS before it progresses.?

Does RRMS progress to SPMS then lead to PPMS? I heard if you are at SPMS that is where you will stay.

Obviously everyone & their MS is different but I have rrms & when not in relapse manage reasonably but I have met someone &. I thought his MS was further along as he has no control over his legs so is in wheelchair & struggles with lots but he said his consultants said he is just rrms…….I am shocked


serankin
5 years ago

When you are entering the SPMS phase, do new symptoms appear that have not appeared before in a relapse? If so, how do you distinguish continuous progression from progression due to the lingering symptoms from a relapse that has not resolved? Is SPMS purely the worsening of old lingering relapse symptoms?


k*s
5 years ago

Do all RRMS cases eventually develop into SPMS? x


tiggywinkle
5 years ago

How do you know when I’m going from rrms to spms? Is it from MRI evidence or physical evidence? My relapses don’t seem to completely resolve anymore. I have symptoms all the time but I don’t have ‘active’ lesions. Just wondered how you make the diagnosis that its spms?


babe2be
5 years ago

I’ve had Mitox and Copaxone (had to stop because I was allergic to Copaxone), so then had Campath for 2 consecutive years. That was 4 years ago and I haven’t relapsed since, how do I know if this is because the treatment worked, or if i’ve just gone on to SP?


edgarleroy
5 years ago

Is it true that acute exacerbations (relapses) arise from immune system attact on the blood-brain barrier and progression arises from inflammatory processes occuring behind the bbb? Do these occur at the same time? What are the best biomarkers or tests to measure progression?


edgarleroy
5 years ago

If our DMDs completely stop relapses and also stop Gd-enhancing lesions, will we still get progression?


kerrylousie
5 years ago

I would like to reiterate tiggywinkles question


f3ng5hu1
5 years ago

Slightly off topic but still perhaps relevant…

Is it possible medically for a patient with rrms not to be diagnosed any further type at all & that the rrms just persists even till they grow really old?

Lets say for example someone diagnosed at 35 as rrms, could they stay rrms till their late 90’s theoretically?


MARK
5 years ago

i was given the label rrms when diagnosed 7 years ago and havent had any relapses since.recently been told spms now and having quite a few problems surely ive been ppms all along?anyone had anything similar?


20fridays
5 years ago

I would echo Mark’s comment. I was diagnosed with MS but no sign of relapses. Then 5 years later, almost overnight I couldn’t walk, and so needed a wheelchair and told that it was SMPS. I’ve needed a wheelchair ever since (4 years).
On this note, one extra question if I may – I do have days where I cant really move my limbs and then the next day I can a bit so I’m able to use a manual rather than an electric wheelchair. Is it normal to have ‘good days’ and ‘bad days’ with SPMS given I didn’t have the RR phase?


shanty
4 years ago

When does these questions get answers? I’ve been keeping my eye on this thread and I cant wait to hear some answers. All very good questions.


freddiems
4 years ago

@shanty we will be filming the Answers on Friday with Prof. Thompson, Ill get the video’s up as soon as possible after that.


f3ng5hu1
4 years ago

Yay! Looking forward to seeing this one=)


20fridays
4 years ago

Have I missed his answers? Or perhaps the results aren’t ready yet..?


stumbler
4 years ago

@20fridays, it’s still work in progress, I think. But there are videos of some of the answers on the Shift.MS Facebook page :-
https://www.facebook.com/shift.ms


20fridays
4 years ago

Thanks for update. I’ll probably wait ’til it’s on the site
Although, I think Im the only person in the world who’s not on Facebook – but this feels like I damn well should be! I think I will take the plunge this time.


stumbler
4 years ago

@20fridays, I don’t blame you for avoiding Facebook. It can be intrusive or just plain embarrassing when you see what people say!
All the Shift videos are available on YouTube, just search for “Shift.MS” and you’ll find all the videos.
You’ll have to search down the pages to find these recent ones.


20fridays
4 years ago

thank you again – good to know there are others on my wavelength.
I will go forth to YouTube!


stumbler
4 years ago

@20fridays, as if by magic, the videos have turned up on Shift (thank you @freddiems )
It’s just here :-
https://shift.ms/ms/peoples-hot-topic/


freddiems
4 years ago

Hi Everyone

Along with posting a new individual question each day on Facebook and Twitter, we have added the full set of questions to the site here:

https://shift.ms/2013/05/from-relapsing-remitting-ms-to-secondary-progressive-ms/

If you have additional questions after watching please do ask in the comments.

Thanks

Freddie


krissie2012
4 years ago

Does anyone know where to find more information on the Jerry Chadawick(?) trails that Prof Alan Thompson mentioned?

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