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When is Secondary Progressive not Progressive?

Husband went to see neuro today and was told that he probably would not get any worse than he is now. This was news to me as I had always thought that SP was just a slide, long or short, to greater disability. He is early 60s, had RR dx about 8 years ago and SP around 5. Since dx symptoms have def. become more and more of a problem. Currently can walk a short disance, has not driven for over 3 years due to problems with vision, has pain, balance, cognitive issues, and more, everything that you would expect.

To be honest I am surprised that the consultant seemd to imply that SP stops increasing disability and this is not what I had been led to understand. It would be good if this is correct though!

I wondered what other peoples thoughts were? Experiences?

I could not go in to the appointment with husband as I could not get parked. I would have liked to have questioned further.

when I was told I had SPMS, my neuro said it can either be a fast progression, or slow, he said my was slow at the time, thank goodness, but this could change at any time, that was about 3yrs ago, now although it is slow, like you’re husband my symptoms have become more and more of a problem, so to me this is what the progression is, and MS is so unpredicable that I don’t know how anyone can say that’s as bad as you’re going to get, but I could be wrong, take good care, Jean x

its interesting and very sad. I never knew that there was a point where progression stopped? Now the question on my mind is why does it stop? what causes it to stop? There must be some kind of clinical explanation.

Who knows, if an explanation can be found then it could lead to a new plan of attack, new treatments

The way I look at it, one million cases of MS globally are categorised into three types,or four if we count Benign MS. POO…There are one million variants of MS and the over paid empathy devoid Neurotics reckon they can put us all into three types.That is the sum total of their 80 odd years of mucking about with us.

“They are the supposed experts,BUT we are the users”

Wb

I have been told progressive MS can plateau, I’m still waiting!

I have SP MS, haven’t had a relapse in 11 years

I have SP MS, haven’t had a relapse in 11 years

Hi. Just had mine “upgraded” to progressive & it certainly is getting worse!!! Cant believe our “vets” think it wont!!! Still reeling at mo about how all the bloody drugs we take does nothing!! Sos, just hate how “know all” & condecending they can all be when its not them. Understand exactly your fears, you pester them for answers Bonnie, & good luck Tracey xx

Hi, I am also surprised your hubby was told that. I believe no-one can determine the MS journey.good or bad.

luv Pollx

Thanks for all the replies. I have been busy searching and this is the first I’ve heard that SP can be predicted to actually stop progressing. I wondered whether anyone else had had similar experiences which was why I posted. Of course the rate of progression can slow down but how can anyone predict that’s it? I dont understand. Well I do. I think the neuros know very little and understand less just how the disease can affect people. OK, not all just the ones that we have come across in the last 8 years. Thinking about it, this is the same neruo who a year ago exclaimed how well my husband was looking. Jolly D.

Thanks again.

I dont mean to sound so negative but ever since this disease has entered my life ive been forced to take a hard look at people, in particular i am talking about neurologists and to an extent the entire system of modern medicine.

Doctors are only as good as the drugs they prescribe. Maybe im nieve, maybe im harsh.

It doesnt fill me with confidence that the “experts” know just as little about the mechanics of this disease as the people who live with it day to day.

I often think to myself that medicine needs a right good kick up the ar*e. Maybe throwing drugs upon drugs at problems is not the answer, i mean theyve been barking up that tree for quite a while now and i cant say ive heard of anything that really excites me, apart from stem cells, wake me up when theyre dishin that out.

and the gold medal for moaning goes to… me