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- What is the type of your MS?
What is the type of your MS?
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Go to the last commentUnregistered member
I have secondary progressive with relapses, but life go on. Is was confirmed in London 2 years ago to start a new drug and after 3 months had a relapse from hell but all's good now
Unregistered member
hi @Jackie2017 sorry to hear that. how are you dealing with all this?
KarenWat
Hi everyone, my name is Karen and I have secondary progressive ms. I'm stuck in a wheelchair now but can relate to all the above. How many pills do folk take? I take loads but most are muscle relaxants. I would be interested to hear how others feel about how many drugs are needed to cope with ms. My main other drug is to help my eyes so they focus properly!!?
Charlee73
Good advisor
Hi! I have secondary progressive too.
It seems that there are two routes, with relapses and those without. I personally have had very little remissions since I was diagnosed, 2006. Sometimes I was jealous of frinds with MS but had cLear remissions, may sound ridiculous to some but to have a period where things stopped and you could take a breath would have been helpful.
There may be 'exasperations' which aren't classed as relapses, always found this confusing, but I believe the difference is how long you have them (?! Still confuses me!)
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Kerry
Charlee73
Good advisor
@KarenWat I take pregablin for pain (4x 75mg twice a day so I can swallow them easier),Naproxen for pain (250-50mg twice a day), Amatryptaline for pain at night (6 small tablets to give 60mg), baclofen for spasms (20mg 4x a day) solefenic acid for bladder (20mg), Naproxen for pain and Lansoprazole to help protect my stomach from all the meds! I have fibromyalgia too, my neuro said last month after having tried the last ms med (tecfidera) with no luck, that he wants to help keep my pain under control while we manage other symptoms. He wants me to try morphine, at a low dose to start with, in liquid or small tablets. He's hopeful that next year a new treatment for secondary is given the go ahead after latest phase 3 trial finishes, Siponimod.
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Kerry
Charlee73
Good advisor
@Fallgallinda Hi! I started with RRMS but was diagnosed as secondary a year ago. I was on copaxone for 10 years and came off it when neuro agreed it was no longer working. I know how you're feeling but there's still other dmds that may be suitable, have a talk with MS nurses and or neuro, look at the MS sociey/national MS Society (whichever is in your country) to give you an idea of what's avaliable to help you make an informed decision with neuro.
I was put on Tecfidera after last mri showed active lesions to try to control any possible relapses. I have just been taken off it after a year as things are still progressing but he's hopeful that a new drug that's aimed at secondary progressive ms is given the go ahead here in the UK next year and will put me on it.
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Kerry
Unregistered member
I have secondary progressive I think. .I was diagnosed with progressive and a ?November last and I'm on rebif which I think is not working. .Ocrevus is the first drug for progressive and secondary ms and is to be licensed in Europe in August this year. ..I live in Ireland and really hope we can afford it here. .. I'm definitely getting alot worse very quickly since my diagnosis my footdrop and other limbs are getting weaker. ..
KarenWat
Hello everyone, just wondering if anyone else has heard the MS Society (?) are starting a trial later this year. When I saw it I phoned and put my name forward. The drug was simvestatin at a high dose. It was for SP MS but I'm sorry I can't remember how it was supposed to help!
Unregistered member
I have Secondary Progressive (Relapsing)
Tracy172
I have primary progressive
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T J Richmond
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Margarita_k
Community managerGood advisor
There are three different types of MS:
1. Relapsing remitting MS - RRMS
2. Primary profressive MS - PPMS
3. Secondary progressive MS - SPMS
What type is your MS? How did you find out about your type? What tests did you have to do to determine it?
Don't hesitate to share and get to know other people suffering with exactly the same condition as you!