The MS scrap heap

[Inactive_User]

@Blossom

I have a lovely supportive gp and husband/family so all is not lost. In fact compared to a lot of threads I read on here I count myself as one of the lucky ones

Hi blossom,

That is so lovely you got such a supporting family around you. My family is finding it a lot harder to accept this. But this is starting to become easier each day.

Remember we are always here for you if you need to talk.

Take care

Robert.

[Inactive_User]

@Blossom

I have a lovely supportive gp and husband/family so all is not lost. In fact compared to a lot of threads I read on here I count myself as one of the lucky ones

Hi blossom,

That is so lovely you got such a supporting family around you. My family is finding it a lot harder to accept this. But this is starting to become easier each day.

Remember we are always here for you if you need to talk.

Take care

Robert.

[Inactive_User]

I have a nice lady neurologist but only get to see once in blue moon and a useless ms nurse, that’s been in the job so long she how I feel better than I do, she actually said your no worse now than you was when I first saw you, are you? You’ve not remembered that I could walk then, do they really give a shit, your just a statistic that helps to pay there wages,

[Inactive_User]

@Graham 100

I have a nice lady neurologist but only get to see once in blue moon and a useless ms nurse, that’s been in the job so long she how I feel better than I do, she actually said your no worse now than you was when I first saw you, are you? You’ve not remembered that I could walk then, do they really give a shit, your just a statistic that helps to pay there wages,

Hi Graham,

I know how you feel. Just try to keep a level head and make a list (On a PC if you have one) of all your symptoms and whether they are new or existing symptoms.

Give the list to both your gp and MS nurse that should make it easier for your treatment.

Hope this works.

Robert.

[Inactive_User]

@Graham 100

I have a nice lady neurologist but only get to see once in blue moon and a useless ms nurse, that’s been in the job so long she how I feel better than I do, she actually said your no worse now than you was when I first saw you, are you? You’ve not remembered that I could walk then, do they really give a shit, your just a statistic that helps to pay there wages,

Hi Graham,

I know how you feel. Just try to keep a level head and make a list (On a PC if you have one) of all your symptoms and whether they are new or existing symptoms.

Give the list to both your gp and MS nurse that should make it easier for your treatment.

Hope this works.

Robert.

[Inactive_User]

@Graham 100

I have a nice lady neurologist but only get to see once in blue moon and a useless ms nurse, that’s been in the job so long she how I feel better than I do, she actually said your no worse now than you was when I first saw you, are you? You’ve not remembered that I could walk then, do they really give a shit, your just a statistic that helps to pay there wages,

Sorry Graham ,

I just realised on last post I said GPS I meant neurologist and MS nurse.

Regards

Robert

[Inactive_User]

@hoppity

@Robert_C

Hi

Just remember this when you feel low you may have MS but MS does not have you as a person. I remember this and it helps me get by.

Robert.

Robert that is almost word for word the best bit of advice I was given over twentyyears ago and I try and live it every day.

That is my mantra pal. Without that I don’t know what I would do I would probably crumble.

Stay strong

Robert.

[Inactive_User]

Hello Robert I’m sorry to hear your family are struggling with your diagnosis, hopefully things will get easier in time. Don’t forget we are here for you will you:-) X

[Inactive_User]

@hoppity

Yah Mitzi way to go I gave up when I couldn’t cope anymore and whilst I don’t think I am on the scrap heap they can’t do much for me so PPMS feels I am scrap they go through the motions but can’t cure me just fire fight each new symptom.

I can relate to that: I have PPMS too, but only dx in January and apart from my balance/walking, I have no symptoms that need to be or can be treated yet. The physio in Occy Health at work is great, he is really helping and he is worth his weight in gold.

[LindaH]

THi everyone, hope you’re all coping. I have SPMS (next stage up from PPMS) and really feel that once you hit this stage it’s very much “thank you and goodnight”! There are alot of us that have been consigned to the scrap heap with this disease, but hey we all “look alright” so who cares. This site is the support alot of people don’t get so thanks for small mercys. Linda x

[Janhhh]

I seem to spend my whole life confused… I thought SPMS was the stage after RRMS and that PPMS was the one that you could get first without going through the others but the one there wasn’t any let up from. Jan

[allensp]

Hi Jan.

To my knowledge you are correct in your descriptions above!

Steve.

[hoppity]

It is great isnt it this disease messes with everything last night I managed a trrip out http://disableddon.blogspot.co.uk/2014/06/fun-fish-and-chips-and-donkeys.html

I went with wife earlier to get grandson from school she does it once a fortnight and I was able to go today normaly raining or I feel rubish. Our daughter wants a lift tonight and Heather has just reminded me if I come I have got to get in and get out in 20 minutes time and it took ages when we got back from school. I cant manage two trips in one daymy body is broke but my mind still works thatswhy I blog about my experiences it keeps mee sane. Don

[Inactive_User]

@Blossom

Hello Robert I’m sorry to hear your family are struggling with your diagnosis, hopefully things will get easier in time. Don’t forget we are here for you will you:-) X

Hi Blossom,

Thanks for your kind comments. That is why I joined the site so that I can talk to and find so many friends like myself who understand what I am going through.

Thanx

Robert xxx

[Inactive_User]

@Blossom

Hello Robert I’m sorry to hear your family are struggling with your diagnosis, hopefully things will get easier in time. Don’t forget we are here for you will you:-) X

Hi Noreen,

I forgot to say I am always here for anyone I have I will never let anyone down any I have been told I’m a good listener if anyone needs someone to talk to.

Regards

Robert xxx

[Inactive_User]

@Blossom

Hello Robert I’m sorry to hear your family are struggling with your diagnosis, hopefully things will get easier in time. Don’t forget we are here for you will you:-) X

Hi Noreen,

I forgot to say I am always here for anyone I have I will never let anyone down any I have been told I’m a good listener if anyone needs someone to talk to.

Regards

Robert xxx

[Inactive_User]

Hi Hoppity!

Thanks for ‘spreading the love’.

I’m quite happy to sit on the MS scrapheap as long as everyone is smiling

Tracyann x

[Min]

@Blossom

I’ve just read your blog hoppity

I’m primary progressive, no Neuro or MS nurse so I guess I’m on that scrap heap…ain’t life wonderful though

Noreen xx

Noreen that’s unacceptable!! PPMS is a life long illness, how can you not have a Neuro or even a nurse? You can go into the NMC (Nursing and Midwifery Council and look up MS specialist nurses as everyone should be referred to one and they’ll have the contact info for you. If not I have a self referral number somewhere, if you want it please pm me and I’ll hunt it out. How on earth are you supposed to have quality of life with no support?

You can also contact Adult Services under your local council and self refer to an Occupational Therapist. They are brilliant. Please don’t accept your current situation, it’s not right.

Cath xx

[Inactive_User]

Hello Cath

Don’t worry about me, I’m ok. I have a supportive gp and family. It’s other more vunerable people that I get angry about…I’m in contact with Greg Knight our MP regarding this matter.

It’s the hospital trust that have made this decision, not the Doctors/nurses who care for patients. Unfortunately, it all comes down to money.

xx

[Inactive_User]

This site needs a auto spell check