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What is Progressive MS?

Hi. I’m posting on behalf of a friend. She was diagnosed with relapse remitting MS in 2005. Within the last 6 months she’s gone from walking with a frame, to now unable to walk at all and needing visits from carers 3 times a day. Her neuro requested an MRI scan, and 6 weeks later received letter to say there was no change. She had her 3 month an appointment with her neuro last week, but she didn’t feel she could ask questions regarding her results because the physio was present, but he did say her MS is now progressive. She called me today very distressed saying she’s spoken to her GP, who told her progressive means secondary. I’ve never heard of progressive MS, unless he meant secondary progressive? If so, why didn’t he just say that instead of confusing her, and why did the letter say no change? I just want to understand what is meant by this term ‘progressive’ so i can explain to her. Thanks

Fi

Hello Fi, All MS is progressive. Relapsing remitting gets worse every time a relapse occurs as each time it leaves a little extra behind after the relapse. Your friend could well have gone into secondary progressive. It really depends how many relapses she has had and what was left afterwards but only the neuro could really define as to what stage she is at. I would suggest she visits her gp and maybe he/her would be able to enlighten her as the neuro would forward a letter to them. Hope this helps. Janet x

Hi

He will mean it’s gone from RR MS to the progressive stage which is 2ndr progressive.

Its called 2ndr because she has had the RR stage,

some people go straight into progressive MS.

Anyway look on the bright side the relapses should finish now

I’m sure there is much more info on this site that will explain it better.

Ronin

Hya, the info on ‘types’ of MS from this website should help:

http://www.mssociety.org.uk/what-is-ms/types-of-ms

The neuro should have been clearer and told her that her RRMS has now become Secondary Progressive MS (SPMS).

Hth,

Pat x

Hi, I`d just like to add something, in the hope it becomes clearer.

RRMS and SPMS do not become PPMS.

PPMS is PPMS all the time.

luv Pollx

Just to clarify things you do get relapses with spms I know purely because I have spms and am having another relapse now and it’s no fun! You just get steaderly worse. Janet x

I’m the same as Janet went from 18yrs of RR to SP and have been in relapse since last November and deffinatley getting steadily worse. It sucks I hate this disease and what it is doing to me. Sue

Thanks for your comments everyone

Fi

Hi.the bit about relapses stopping doesnt always apply when you move from rrms to spms,my relapses have just got more severe and more frequent since i moved on to the spms, from rrms, i too was under the impression that relapses stopped,i so wish mine would.

Hello,

Their is a very good vid on you tube by Shift.ms explaining the diff between spms and ppms.

Darren

I have PPMS and nothing happened in the first 4 years, but limping, fatigue, short term memory loss, ballance, weakness of legs and arms and lack of grip in left hand are all gradually getting worse. hence Progressive MS.

I’ve learned that no two ms cases are the same and found that no one on this forum had the same symptoms as me.

Apathy John.

Hello,

Shift.ms have a great vid out on you tube about the diff between spms and ppms.

Darren