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Patients Multiple sclerosis

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Topic of the discussion

Carenity Member • Community manager
Posted on
Good advisor

First of all I'd like to thank all of those who have taken part in our poll and shared the information about the type of their MS.

Multiple sclerosis affects about 2 and a half million people all over the world and about 107 thousand people in the UK, this number growing by 2,4% every year, due to patients with MS living longer.

About 85% of all those diagnosed with this condition would have Relapsing Remitting MS (RRMS), which is characterized by periods of attacks and partial or complete remissions. Most people are initially diagnosed with RRMS, and eventually develop Secondary Progressive MS (SPMS), with progressive worsening of neurological functions. Finally, only 15% of people are diagnosed with Primary Progressive MS (PPMS), meaning that they do not go through remissions and relapses, but experience progressing worsening of symptoms right from the onset.

Among the members of the MS community who participated in our poll, indeed, 40% are affected by RRMS. Even though PPMS is the most rare type of MS, we seem to have quite a lot of members with this diagnosis (almost a third of all the respondents). SPSM is the type of only 16% of the respondents, while 2% have stated they had benign MS.

Interesting enough, 12% of the respondents are not aware of the type of their MS. Apparently, some doctors do not reveal the type of their patients' MS. Or do they simply not know due to lack of symptoms tracking?

How did you personally find out about the type of your MS? How does this knowledge affect you and does help you with the management of your condition?

If you do not know it, how can you explain this? Would you be willing to know it or do you think it would not change anything?

How many of you have had their type of MS modified in course of the illness? How was the treatment adapted and how was the management different?

Beginning of the discussion - 5/15/18

Knowing or not knowing your type of MS: how does it affect you?
Carenity Member
Posted on

I knew it was rrms because I was hospitalised for 10 days and was told by the consultant 

Knowing or not knowing your type of MS: how does it affect you?
Carenity Member
Posted on

I’m not sure which type I have, even if I do in fact have it. It’s about a year ago and I was 3-4 weeks pregnant, suddenly I lost my balance, my left eye went very squinty, and my hearing was badly effected. It look me several months to get back to my normal self. I have seen a neurologist who hasn’t prescribed me any medication, the brain scan showed some scaring, and the lumbar puncture showed something, I don’t know what tho. 

Im hoping it was just a one off, does anyone think I should be on medication. I have been fine for the past 8 months.

Harriet

age 21.

Knowing or not knowing your type of MS: how does it affect you?
Carenity Member
Posted on

I’m not sure which type I have, even if I do in fact have it. It’s about a year ago and I was 3-4 weeks pregnant, suddenly I lost my balance, my left eye went very squinty, and my hearing was badly effected. It look me several months to get back to my normal self. I have seen a neurologist who hasn’t prescribed me any medication, the brain scan showed some scaring, and the lumbar puncture showed something, I don’t know what tho. 

Im hoping it was just a one off, does anyone think I should be on medication. I have been fine for the past 8 months.

Harriet

age 21.

Knowing or not knowing your type of MS: how does it affect you?
Carenity Member
Posted on

I was originally diagnosed with PPMS in 2004. In 2007 following a couple of ‘relapses’ my diagnosis was changed to Progressive Relapsing MS, a type that is very rarely mentioned. Since 2010 my records suddenly show SPMS. I queried these changes with my neurologist and he said ‘well it doesn’t really matter which type you have, but I can tell you, it’s progressive’. I’m still none the wiser lol 

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