Diagnosed in June of this year, but been suffering since 2010, have had 2 relapses in this period. When do you find out what type of MS you have? Are they able to tell you? Not going to see my consultant till next June. But was just wondering can they tell what type it is from your results or do they have to look at your history of symptoms? Any help, advice would be great… Thanx
Hi,
I was diagnosed with MS in 2007 and because I was told that it was progressive I assumed that I had PPMS. I think I asked my neuro a couple of years later and he said I was “classic secondary progressive”. I’ve gone downhill quite a lot since then but no one has said anything about whether I’m now PPMS. I’ve never had a relapse. I’m sure that the doctors etc know what’s going on, but they never say unless asked. I think they feel a bit awkward or assume you’re not interested in the finer details.
Heather
Hi Pink,
I did reply to you earlier, but unfortunately it was one of the posts that got accidentally deleted.
I got told straightaway, at diagnosis, that I had relapsing remitting type.
As you say you have had two relapses, itr’s almost certain that you do too (in common with about 85% of newly diagnosed people), as relapses aren’t usually a feature of other types of MS.
It is possible, but rare, to have a combination type, with occasional relapses superimposed on a mainly progressive course. But if it hasn’t been mentioned that you have this rare type, then you probably have relapsing remitting.
Tina
There are some quirks, but the basics are:
If you have relapses/attacks and you improve between times (not necessarily 100%), then you have relapsing remitting MS (RRMS).
If you used to be like that, but these days you are gradually getting worse, then you have secondary progressive MS (SPMS).
If you have never had relapses and have always had a gradually progression, then you have primary progressive MS (PPMS).
Test results can’t tell us anything about type of MS. It’s all about pattern of attacks and progression.
There are some good, free booklets about MS on here and on the MS Trust website, if you’d like to learn more.
Karen x
It is a strange question really, I expect it is like any condition as to how bad it gets …RRMS can progress to SPMS all can get severe
I was dx 3 years ago and can still walk around the house with a rollator but for anything else I need a wheelchair or scooter
Hi anon, don`t think it would help to get answers to your question. Things can stay the same for years in PPMS…we know they can get much worse too…have seen this happen…not nice!
luv POllx
Hi, you say you dont know if you have progressed to ppms,but the thing is, you cant progress to ppms its ppms from the start and remains that way, and its progressive from the start
rrms can and usually does progress to spms usually after 10 to 15 years of rrms,
i was diagnosed as rrms and moved on to spms after 13 years,i am quite unusual because even though i am now spms i STILL have relapses,they have just got a lot worse, so thats the way my ms is progressing with each severe relapse that i have,
If you have never had relapses it sounds like ppms.
Does anyone have experience of taking Tecfidera for relapsing remitting ms or experience of any other medication
Hi Bettina,
You’ve added to a very old post titled What type of MS.
Probably better to start a new thread with the title Tecfidera
Then you may get answers. Put the name into the blank search box top right too.
Jen