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4 quick question for the SPMSers

Yes/No response would be fine – thanks

  1. When you were told you had SPMS did you assume there would be no improvement, however slight, in your condition?

  2. Since being told you had SPMS has there been any improvement, however slight?

  3. If and when you told friends/family/manager that you now had Secondary Progressive M.S. did people react positively?

  4. In retrospect do you wish you hadn’t been labelled as SPMS but would have preferred to have been told something along the lines of ‘your m.s. is unlikely to improve?’

Hi

1- No

2- Yes

3- No

4- No

neil

  1. No

  2. No

3.Yes

  1. No

Jan x

  1. No

  2. No

  3. Yes

  4. No (was expecting this to happen eventually)

Hi,

  1. No

  2. No

  3. Didn’t think about what people thought, most people don’t understand the various stages/labels.

  4. No, this disease is what it is and for me it was always going to be progressive.

  1. Yes

  2. No

  3. Yes

  4. No

  1. No I was told it would get worse but not sure how quickly it would be.

  2. Hard to tell I have been progressing slowly but I have recently had physio and I do think it helps but no real improvement.

  3. Yes I have had support but most people just lump all msers the same. But since I have had visible disability people are a lot more understanding. Although saying that people, including family dont realise how limited you can be, which can be very isolating and frustrating.

  4. I was initially dx PPMS then SPMS and I was left in no doubt I wouldn’t improve.

Mags xx

1- no

2- yes, down to a 2nd course of IV steroids

3- yes. i have been very fortunate (so far re manager anyway)

4- no. its a label that most GPs don’t fully understand, so not sure how many others do.

my father-in-law is a retired GP who says most GPs don’t see a case of it come through their door during a career, so it’s rarer that people think. 100,000 in the UK (population of over 60 million? a drop in the ocean compared to other stats)

Hi folks 1 No 2 No 3 Like me most people had never heard of MS…I hadn’t to be honest! Most people are sympathetic initially, then just carry on with their undisabled lives. 4 We’ve just ‘Drawn a short straw’ MS STINKS! 4