Forum

The MS scrap heap

Everyday living
#1

I got a news paper yesterday and it had an article about MS in it that in a few lines of a 16 page suplement really touched a nerve. I have just written about the spooky goings on in my Blog Disabled Don read about it here http://disableddon.blogspot.co.uk/2014/06/the-ms-scrap-heap-that-is-primary.html

Another scorchio day here in Margate just been eating ice cream with my grandsons while Heather phoned the MS nurse

Hope you are all fine, I feel better now that I am cutting the tizanidine down and Heather has got me an appointment for next week YAHHH she is an ANGEL

#2

Hi Don, Itā€™s awful to be written off isnā€™t it? I remember my neuro saying just get on with your life the best way you can. Still you have to remain positive. Well it has started pissing down here and my washing is soaking. Glad you are feeling better. Take care. Mags xxx

#3

Iā€™ve just read your blog hoppity

Iā€™m primary progressive, no Neuro or MS nurse so I guess Iā€™m on that scrap heapā€¦ainā€™t life wonderful though

Noreen xx

#4

My neuro was kind enough to admit that there is no medication but to avoid trite remarks about how I should approach my future. Iā€™m not ready for any scrap heap and while I have looked into options for the future, Iā€™m still coping with full time work so yah boo sucks to the MS!

I had a very positive review with my physio last week, so the scrap heap is going to have to wait a while longer for me to join it!

#5

Nice one Mitziā€¦

xx

#6

So very very true. No cure, no treatment, no support, no neurologist, no ms nurse

#7

Noreen I love life and most of the time I wear a smile it confuses people who think AHH POOR DISABLED MAN HE MUST NEED SYMPATHY. Life is for living, this ainā€™t a practice run. We only get one shot at life so enjoy it whilst we can.

#8

[quote=ā€œMitziā€]

My neuro was kind enough to admit that there is no medication but to avoid trite remarks about how I should approach my future. Iā€™m not ready for any scrap heap and while I have looked into options for the future, Iā€™m still coping with full time work so yah boo sucks to the MS!

I had a very positive review with my physio last week, so the scrap heap is going to have to wait a while longer for me to join it!

[/quote] Yah Mitzi way to go I gave up when I couldnā€™t cope anymore and whilst I donā€™t think I am on the scrap heap they canā€™t do much for me so PPMS feels I am scrap they go through the motions but canā€™t cure me just fire fight each new symptom.

#9

MAGS my first Neuro was awful beside manner no existent he one said to me ā€œput up with it this is as good as it getsā€

At least rain water is good for rinsing Have a good day. DON

#10

I can tell your a man that loves life Don, it comes through in your writing:-) I love life tooā€¦no matter what it throws at me. Iā€™m touching wood has I write this :slight_smile: Have a great day :slight_smile:

#11

Hi

I have just posted a reply on " Top Neurogist should treat".

Couldnā€™t agree more, only please include 2PMS in that

Ronin.

#12

Hi, My husband died from Cancer in May, I managed to infect a cut on my toe and spent two weeks on antibiotics, I couldnā€™t put any weight on my left foot, had a fall, and now have carersā€¦sorry, support workersā€¦coming in twice a day. I saw my neuro for review at the start of June. She was running an hour late. When I got in to see her, the first thing she asked was ā€œHave there been any major changes since I last saw you?ā€ at which point I burst into years. When she realised she wasnā€™t going to get much out of me she said sheā€™d call me back in a few months and get the MS Nurse to come out and see me. I was then bustled out of the room. So, yes, I well understand that some neuros have the subtlety of a brick. When I was first diagnosed back in 2007, my then neuro told me to stop crying because he needed to talk to me! On the plus side, the district nurse discharged me yesterday because my toe/foot looks a lot better. Now to strengthen my leg muscles up again which have turned to jelly as a result of being sat on my backside in a wheelchair for 6 weeks. Being on my own now with two boys has made me more determined to get some health back. When others are around to do things for you, itā€™s easier to just let them do it, but it turns you into a vegetable. It turns you what others expect you to be like. Time to break the mold. Heather

#13

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.

#14

Very sorry to hear about your husband Heather. I hope you have friends/family to talk to about it. Please feel free to private message me anytime if you want to talk. People tell me Iā€™m a good listener :slight_smile:

#15

Heather what a wonderful name (my wife is called Heather) glad your toe has healed up feet are so painful when you get something wrong with them. Sorry you have had so much to cope with. I have tried hard not to turn into a veggie ( I am an ex butcher slaughterman so against vegitarianism) I cannot walk anymore but it has taken over twenty years to get virtually wheelchair based but I keep smiling. but sometimmes I am other timmes I am and Ican cry at the drop of a hat now I have become an emotional wreck

#16

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.

#17

Hi, It is really interesting to read different experiences. I donā€™t live in the UK and my diagnosis seems to have been quite quick. I did go to a MS specialist centre who told me it was probably PPMS so no treatment. I did eventually ask my neurologist about a MS nurse and I had one appointment during which I was quoted statistics about who was likely to have each type of MS. I felt it was a waste of time, I havenā€™t been back. No drugs, no advice just muddling through and not sure if I should be doing anything special.

#18

As I read this I just cannot believe there are fellow sufferers who seem to have no medical support. I did have my second neuro say ā€˜its just MS symptoms get used to itā€™ but Luckily I was able to get another one who is fantastic and now I shall appreciate him even more.

#19

Sparkle speak to someone there are thing that relieve bladder problems or spasiscity or vit d etc all these things and pain relief all make life easier for me.

Don

MS10999B my doctor fights for every and anything for me, I have some great MS nurses and OTā€™s

#20

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 :slight_smile: