M S NURSE

Primary progressive MS
1

Hi Does every one out there who has PP MS get support from a M S Nurse?

2

Hi Legless

Not all areas are lucky to have a MS nurse ascribed to them, but they are a real source of help.

Your neuro or gp would be able to tell you if your area has one.

Pam x

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3

Hi Pam My area do have one but for what ever reason she will not see me. It could be she is full and can be selective who she takes on but who knows. I know this I sit alone, house bound with no support and with no one to talk to.

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4

Hi Legless

I don’t understand why she won’t see you, I would have a word with your GP and ask him to write a letter referring you. Surely they can’t ignore that.

Never heard of that before, I think it’s dreadful. Wishing you all the best.

Pam x

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5

Hi again. I have already asked my GP and he says there is nothing he can do if she has decided to not bother. that is why I was asking if it had happened to anyone else

6

I think you can have ms for too long (I have had PPMS for 27 years} I think they just get fed up of the same all face.

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7

Hi

Even if there is no treatment available, it would still be nice to have someone at the end of a phone who could offer advice, if nothing else, at least it would be someone who understands, or should do.

I still think it’s dreadful, and I know each area is different and money is tight, but I was diagnosed with ppms back in the 80’s and my nurse informs me of symptom relief meds, and refers you to other areas when needed, and is a support at the end of the phone.

I would try seeing a different doctor in the practice or the neuro, and explain that you need some support, and if needs must, try ringing the nurse again. It shouldn’t reflect on support how long you have had ppms.

Wishing you all the best.

Pam x

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8

I am going see my neuro in Dec so I will try. Thanks for your help

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9

I was wondering about this Legless. My neurologist was very accessible when he was sending me for tests but now he has settled on ‘probably primary progressive ms’ he doesn’t want to see me for 8 months. His secretary suggested I call the MS nurse but her voicemail message warns that she is overwhelmed so unless going into a new flare see your GP. Since we are never in a flare or always in a flare I’m not sure where that leaves us? I left a message so who knows?

Will our GP’s prescribe a different medication? I’m struggling and think surely I could have a better quality of life than this?

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10

Your nurse sounds wonderful, which area of the country are you living?

11

Hi I live in West Yorkshire. Perhaps there are too many people with MS in my area,

12

I tell you I think they get sick of your face and think not him again.

13

When I was diagnosed, a my 2nd neurologist meeting, I asked him i I’d be referred to an MS nurse and he said yes, he could do that… I asked, it wasn’t offered to me! The same happened with neuro rehabilitation.

Do ask, I don’t think anything happens automatically

Sonia x