well my wife was diagnosed 32 years ago just when she qualified as a Nurse??? but we have been on a long journey good an very bad
we moved to Bulgaria 19 years ago and she has had a better life here than she would have had in the uk ,the freedom to go out safely etc but in the last few months she has deteriated so much ,excessive tired sleeps 18 hours a day no energy etc this we are not used to we have a pool and we swim every day up to 3months ago ,her legs are so weak ,i have always got steroids etc over the counter here and stopped the attacks and we carry on what do you do when it gets to this stage ??? what do you take??? we always knew it would happen but the rapid decline has shocked me , obviously i monitor evrey year and monthly but this is so fast ANY HELP Please
Hi there,
I’m guessing that because she was diagnosed so long ago she’s never been on any medication to stop any progression. You need to see a neurologist to really understand what’s going on, but it may be that it’s turning into secondary progressive ms. If there haven’t been any relapses and it’s just a gradual decline of function then it can be the only explanation. There is no treatment, and steroids won’t help. Exercise is probably the most important thing I’d guess, the way that it’s been for me is that the things that I use least are the things that stopped working first. Except for my legs! The only bit I’ve got control of now is my right forearm and hand, and they are a struggle to use. If you can see a physiotherapist, ideally a neurophysiotherapist, they will be able to help you to you know what needs doing and how to do it. It’s probably a good time for you to look to see if you need to make any changes around the house to make sure that everything is accessible if she does ever need to get into a wheelchair. I’d be in touch with an occupational therapist here, I don’t know whether you’ve got them over there. Try and work out what you need to do so that when the time does come you’re prepared for it, so things like widening doorways making sure the bathroom is accessible fitting a track hoist getting a stairlift arranging ramps etc. It’s also worth remembering the progression doesn’t happen at a steady Pace, it slows down and speeds up and just stops completely, it can be very random. It’s also worth bearing in mind that the bladder can be affected which can mean that it doesn’t empty completely which can be a bigger risk for a UTI. UTIs cause chaos with MS, as does any kind of infection, so just check out everything with the doctor just to make sure there’s not some underlying cause.
My heart goes out to you, you’re doing a good job. Take care of yourself
thanks for the reply
we used to pay for interferon in the uk as we had the wrong postcode !!!
stayed with that for ages and my wife was good with all the downsides ,tired ,low energy etc but it didnt stop her doing 15 years as a nurse in the itu but as we all know the ms creeps along , we have been lucky to live in BG , i adapted the hose and its ok , the lifting is going to be the next big thing ,we are in out 70 the years and i still am able to pick her up off the floor and get her back in bed or on the scooter etc , so i am lucky that way , i will look at a hoist ,the bathroom is a wet room i can wheel her strait in there , i put ramps into the house and to the pool and duck area so that side of it is ok what drugs do you take cymroglyn??? lucky for us she is always happy and content in our life here , thanks Chris