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multiple sclerosis - Page 4 - Carers UK Forum

multiple sclerosis

For issues related to specific conditions and disabilities.
my mum has MS, had it for 20+ years, her younger brother was also diagnosed with MS and sadly we lost him earlier this year, just shy of his 42 birthday.
If you're a male carer like me for someone with MS and want a chance to have your say there's a new online survey available: www.isurvey.soton.ac.uk/1148
It takes about 15-20mins but I liked the questions as they all seemed very relevant. Enjoy!
Hi david and welcome. Thanks for the link.
hi sirus,
yes if it can be said MS has a ripple effect then my son and I are the first ring in that ripple. Hubby has MS and it effects us all every day.
Welcome to the forum scattybrain, and what a name!
hi sirus,
yes if it can be said MS has a ripple effect then my son and I are the first ring in that ripple. Hubby has MS and it effects us all every day.
Interesting point about the ripple effect. This can probably stand for quite a few conditions. Maybe a nice topic to start in the 'General Discussion' section.
Please feel free to look around or jump in anywhere you want. Doing an introductory post in the 'New Members' section is always a nice place to start Image
My oh has MS, but we both suffer from it!
Welcome Sirus and Scattybrain Image
Welcome Scattybrain and David.

I agree with Bertiebear, the ripple affect is pertinent to lots of us. I care for S and his autism - both our lives are affected daily by autism.

yes indeed i have caring for my husband with ms you poor thing having to deal with it twice,not coping so well at moment, trying to sort out more help so that i can actually have a day off. are you getting any help?
I suffer from relapsing remitting MS and I was diagnosed on 31 October 2001, I had a few relapses, but in 2005 I had a drug called Campath 1H, this drug has not been passed by the government yet so I was a guinea pig, trying it to see if it worked, It's a three yearly dose, my 1st dose was in 2005 I was in hospital for five days and had a canula fitted and the drug was put through in a drip, every day for the five days, I had to drink 4 litres of water in 3 hours every day.
Here are the side affects - flu like symptoms, a 30% chance of having thyroid problems, and a 1% chance of having cancer of the lymph nodes.
The 1% chance of having cancer of the lymph nodes held me back when I was first offered the drug, till I was told 1 in 3 people get some form of cancer anyway with or without the drug ( don't mean to scare anyone with that comment, it's just what I was told) so I went ahead and decided to give it a go.
I was given steroids through the drip then the Campath, this made me feel like I had a bad case of flu but only lasted a couple of days, plus I was backwards and forwards to and from the toilet cos I was drinking so much water so quickly.
After the 5 days I was allowed to go home and for the rest of the year I felt like a new woman, so in 2006 I went back and had another 3 days of Campath and the same routine all over again, then I had to have monthly blood tests to check that my platlets hadn't dropped, and my blood was clotting, if it was I would've had lots of bruises to prove it. (and they done this because a man in America who had Campath didn't report the blood not clotting and he died)
They told me I was all fine and didn't need the third dose, but in august 2010 called me in for an MRI scan which showed that a had another new lesion in my brain and I needed my 3rd dose of Campath, so I went in for 4 days but only had Campath for 3 days, but this time when I came out I somehow didn't feel like a new woman, my legs were weaker and I began to struggle with my walking.
Although I can still walk; I need help when I'm out and about and usually rick holds my hand to stop me from falling over, or sometimes I use a walking stick, I also have a mobility scooter which I can use If I need to, but Usually when we go to the beach I walk as the scooter will not fit in the car with the dog in the car too. so I'm still on my feet.
I have a possible under-active thyroid which is being checked out at the moment, but I have also put on a lot of weight which I cannot loose. (something an under-active thyroid would cause) I want to loose the weight because I want to stay on my feet and I don't want my weight to take me off my feet, If they sort out my thyroid so I can loose weight, I will be happy, at the moment being 16 stone doesn't suit me. I prefer the slimmer me. I was 10 stone in October 2010 and that's what I want to go back to.
So the Campath stopped the relapses; but made other things in life slightly more difficult.
Hi we have been together for 17 years now and I too care for my wife she has had MS for 7 to 8 years and this year we finally got married, before we travelled around enjoyed life she ran her own music company, then she was DN with MS and to present day she is confined to bed and chair. with no speech plus a few other problems we have good support from district nurses and carers that come and see her for bowel and bladder management.
Before we knew anything we would generally try to sort it out ourselves but soon realised its pretty hard to do and my health started to suffer.
One thing I do remember being told was at some time the person with MS might forget what is wrong and forget who you are so it's family/close friends that continue the suffering so be sure to get as much help as possible.