Forum

Have you got Secondary Progressive MS?

People with Secondary Progressive MS are wanted for a trial.

Here is the link with the application link:

http://www.ms-smart.org/

Pat x

Oops sorry, it looks like a timing issue resulted in my duplicate post.

Nice to see something is being done for SPMSers though.

Agree Whammel… and if it works maybe they will trial for us PPMSers.

Pat x

Got a dx of RRMS last Nov. There’s been no relapses as such, but my walking has deteriorated and I’ve had to cut my hours at work down to 4 mornings a week. When I saw the consultant in May he said “there is progression” . So, can anyone tell me what criteria the medics use to diagnose SPMS? The consultant went on to say “you’re not as bad as some people and we’ll keep an eye on you”. If my MS is going to become SP I would be very interested in the trials, but I feel a bit confused about how things are going at the mo. Can anyone help with this please?

After years of RRMS I have just been told that I now have SPMS. DMDs were stopped and trials were mentioned to me (MS-SMART). I told the neurologist that I would be interested. Thanks for directing me to this site.

I’ve got a suspicion I too may be SPMS, as (not wanting to tempt fate), I haven’t had an absolutely indisputable relapse since Dx over 2.5 years ago. I reckon I’d had MS years before that though, and might already have been transitional at the time of diagnosis.

Seeing the neuro at the end of the month. Won’t go out of my way to raise it, but it will be interesting to see whether he suggests I’m now progressive. I think I’m getting very slowly and subtly worse, even without obvious relapses. Or is that just flippin’ old age taking it’s toll?

T.

x

Looking to the future there’s no difference between someone with SPMS and someone with PPMS.

@ carrot-cruncher

You start with the MacDonald Criteria to get a Dx of MS
PPMS is a straight decline from the onset (could be sudden, could be very slow).
RRMS requires (by definition) relapses and periods of remission.No-one knows how long either will last, or how bad they will be. Some progression is, however, guaranteed. SPMS is what started out as RRMS, but where there is no longer aqny remission, just a continual decline (and could also be slow or not).

Some Neuros use terms like “Benign RRMS” and “mild RRMS”, but these are not a lot of help, and far from official.
Also used is “Agressive RRMS”, which may be appropriate for some people (but is not official either).

@ Anitra

You are not into old age yet, Tina, middle age does not start until you are 55. I heard this on my radio one day, istting in my room in the student accomodation at Cardiff in my second year. I was only a mere 51 at the time, so I thought “Whe-hey, I’m still young”, and went out for a glass or two in the student union.

My MS has been SPMS - right from the start - 31yrs ago. So know remissions - its there all the time. Some symptoms l do not have now. Thats the very slurred speech - and paralized side of face. [that went when l had my amalgum fillings removed] And the dreadful trigeminal neuralgia - which stopped when l started on LDN.

Shall look into the trial - but if it means travelling any distance l shall not be able to partake.

Just started filling in the application - but found there were no centres in this area - Worcs/Warks. ls this treatment fampyra - the walking drug? as l would not be able to ‘walk’ far enough to be included. lts always the same for me - l either live too far away from a ms centre/nurse - or l have had the disease too long [l agree with that].

@Spacejacket:

It must have been relapsing remitting at some point, even if it was before you were diagnosed. You cannot have SPMS without having RRMS first, so either they made a retrospective diagnosis that you must indeed have had RRMS that had now turned to SPMS, or else you must mean it has always been PPMS.

Tina

Hi

I have looked at it but as useuall I don’t meet the criterior.

Beable to walk 20mtrs even with crutches

I’m in a wheelchair.

Why restrict at this level progression hits other areas as well.

So again I’m feeling rejected and left out.

It’s like being at school and someones picking a team and you are left till last

Awell disapointment again soldier on.

Ronin.

On seeing this on the spur of the moment I registered my interest, now I am not sure I should have! Can I unregister? Does anyone know how they select people for these trials? As I don’t have a neurologist (can’t do anything for me, so he discharged me, no doubt got a tick in a box for that) would I not be considered anyway?

I clicked anon by mistake, but see Anon in brackets under my user name, how is this anonymous?

It is anonymous (you and the mods can see your real username, but nobody else can).

As for “unregistering”, registering an interest doesn’t commit you to anything at all - you’re certainly not pledging to join the trial. So why not just leave your options open, and see what further info turns up? If you’re positive you don’t want to take it any further at that point, then just bin it. They’re not going to pursue you for breach of promise or anything. There are very strict guidelines around clinical trials - they’re certainly not allowed to hound anyone into joining one, who doesn’t want to.

Tina

Hi I have SPMS and have been on a trial since last September of TYSABRI, do not feel any different if anything worse. I could be having the plysbo ?? Anyway else on this and how are they feeling ?

Secondary progressive MS

SPMS

No it’s not fampryra. It’s some drugs that are commonly used for asma, motor neuron… can’t remember what else. They have already passed their safety tests and are being used widely for these other conditions and now they think they will help slow or stop progression of MS.

Pat x

Another disappointment - I’m too old.

For more on this story, go to:

and see that the drugs are really those used to treat motor neurone disease (not Fampyra).

Geoff