Secondary progressive dx!!!

Had RRMS for 10 years. Have just had appointment with consultant who has told me I now have progressed to secondary progressive and have taken me off Rebif. Although I expected this why do I feel I’ve been punched in the stomach and thrown out of a plane without a parachute!

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The Barts Blog covered this subject recently. Multiple Sclerosis Research: #ClinicSpeak & #ThinkHand: stopping DMTs - are you salvageable? It seems there are a few drugs in development and probably worth asking about.


what neuros fail to understand is that bits of us may be gradually deteriorating but other bits may recover after not working properly. We may have a leg that is slowly packing up whilst our arms may have periods of weakness and the they may get better.

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Hello Angelica, I have had MS for 30 years, but only a couple of years ago I was officially moved to SP. I have always been on Rebif and so far the neurologist hasn’t moved me on to anything else. Moira

I saw a new neuro (changed hospitals to Queen Square) at the beginning of August. He was really excellent and treated me as if I was a new patient (which I was to him) - very thorough.

I was dxd with RRMS in January 2015, and the first neuro reckoned that I’ve had it since 1997. Last year I asked him if it had progressed to secondary, as I felt that my level of disability was increasing very slowly but surely. I got a definite ‘no’ and I wondered afterwards whether this was a way to justify keeping me on Tecfidera, which I’ve been on for two and a half years. Prescribing criteria, etc.

The new neuro strongly suggested SPMS, and said that if this was the case then I should stop the Tec. I’m to have another MRI in January and see him again in February for a decision.

I know that it’s just a label but I was somewhat knocked back by this. In a way it revived the ‘grieving’ process of the original dx. In the meantime I’m getting fed-up with the Tec as it has started to ‘disagree’ with me and I almost look forward to stopping it - if I do.

Whammel, thanks for those links. I didn’t quite understand the Barts blog one (must be having a dozy day) but I’ll certainly be asking about new drugs in development when I go.

Louise x

My neuro vaguely (he’s always been a tad vague) mentioned Cladribine for me as I’m not eligible for DMDs now that I’m SP/Advanced and 7 on the EDSS. But then when reminded that I’ve experienced insurmountable side effects in 3 out of 4 DMDs, thought, mmm perhaps not. But him acknowledging that my MS is now progressive was actually a relief, now I can just stop sitting in appointments with him writing down the names of various DMTs and one by one crossing them off the list. It was becoming a little dispiriting. Sue

I’m PPMS & seeing people with SPMS after refusing DMD’s is quite demoralising. My personal research has taken me to some odd places, & then I get labelled a fruit bat. Stay on the side of the so called experts, or get locked up & have the key thrown away, by the people who didn’t have a clue in the first place. It’s like being passed around for people to claim funding for their extensions & holidays. I think it’s time to go on a holiday myself, I’m getting dizzy at all the conflicting arguments. My medical record is going from bad to appalling. Trust who, I want to know! Trust yourself, I say. I’ve done that much research, even the neuro can’t keep up. Going with what you know works. I should be on a commision. Perhaps a plastic name tag, a flash car & a suit would help. It seems to work for everyone else. Stay sane folks. MS means whatever folks with greed issues, want it to mean. Terry

I was RRMS for 15 yrs been SPMS for 5.

Had 8 years of “DMD”. What did they modify if I’m now SPMS?

Do DMD actually work??