Hi everyone, I’m new here. First I’ll give you a quick summary. My Mum has had MS since approximately 1989, but was only diagnosed in 2000 approx. My Dad was her only carer until he had a fatal stroke about 18months ago. My Dad wouldn’t let anyone in because he felt that they would take over. My Mum was originally diagnosed with relapsing remitting MS, but is now unable to stand or walk and requires full hoisting, she wears inconitence pads, she struggles with memory. Mum takes amitriptyline and tolterodine. My question is, because Mum has had MS for so long will it eventually become secondary progressive? Also Mum hasn’t seen a specialists since she was diagnosed in 2000, and was only prescribed medication that she’s been on for years, how do we refer for an up to date assessment of her MS?
It sounds like your mums MS has been a bit ignored and as a result she’s now very disabled. Obviously it might have happened anyway, that’s the trouble with MS, it’s unpredictable. She could have had DMDs for the whole time and still have become this disabled.
As Julia said, ask her GP to refer her to a neurologist. Also, is there a bladder and bowel service she could get some help and advice from, if so, they may well do a home visit. Or, the GP could also refer her to a urologist who might think there is a better solution for incontinence than just pads or her current medication.
As far as becoming secondary progressive, it may have already done so, or it may never. It’s not possible to tell disease progression from disability progression, it’s likely that a neurologist would refer her for an MRI scan to ascertain whether s/he thinks it’s in a progressive phase now or whether it’s still relapsing remitting, in which case they may feel that DMDs are helpful.
There should also be an MS nurse locally, who could maybe come and visit your mother and help her to reach the appropriate specialists to help with her specific problems. Again, the GP may have the details and be able to refer her, or the neurology department of the local hospital will be able to give her a referral.
I wish you all the very best, unfortunately MS is an absolute minefield of specialists and referrals. And being new to dealing with your mums very complex health needs will make matters slightly more difficult. If you need any advice, obviously look on here, or on the Everyday Living board. Also check out the publications offered by the MS Trust: Shop - MS Trust They are invaluable for helping you find your way through the MS maze.
When my dad was alive, he said that mums Nero told her they don’t know the future, prescribed her painkillers (tramadol) and said not to make things too easy too soon!! And that was that!! My mum was walking up until 2yrs ago, but towards the end of my dads life, he had to physically lift her on and off things such as chairs, the bed and the toilet more and more everyday (he even did it whilst having a stroke, because he had no way of summoning help, until I came home from work and found both my mum and dad onthe living room floor --they had been there for about 9hrs).
My mum was reassessed abit whilst in respite last year, and she was deemed to non weight bearing, I think she was like this for quite some time before dad had his stroke, because I saw it every day as I live with her.
We had a problem getting mum into respite in the first place last year because social services had mum down as deceased!!!
I think mum has fallen off the radar from specialist s.
First, apologises to Julia, I didn’t mean to call you the wrong name.
Carole, my Mum doesn’t even have an MS nurse. I think as soon as Mum was diagnosed, she was discharged. I know Mum was seen by a physio about 8yrs ago, because Mum had turned to crawling round on the floor, and they managed to get her walking again with the aid of walking frame, but within a couple of years, Mum found it increasingly hard to walk, stand and getting in and out of the bath. Also the physio advised a change of medication, because the tramadol wasn’t working anymore, from then Mum’s been on amitripyline.
I have vivid memories of Mum screaming and shouting about not wanting a bath because she couldn’t use it anymore. One particular memory I have is of Dad physically lifting Mum up over his shoulder and carrying her to the stairs, Mum screamed and shouted throughout it all, Dad lost his grip of Mum and she slipped down the stairs. Dad lifted her up and literally threw on the settee, and shouted at Mum telling her that everything was her fault!
There were maDad nmornings like that! Dad struggled on like this until he eventually realized he needed help and allowed social services in, 4yrs ago. They recommended a through floor lift and a wet room created. My dad wouldn’t allow it, because ’ It’ll knock the house to bits.’ And he bought stuff himself, stand aid, a 2nd wheelchair, commode, banana board and stair lift. The social services did loan us a bath seat, but that broke after about a year. Dad nearly tried to fix it himself, but then returned it to social services and bought a bath seat out of his own money instead! Then over the last 4 years, mums lost the ability to stand or walk herself.
I know someone, whose best friend had MS, but they passed away last year because of complications. But I do know they were on medication specifically for MS (the person I know said that it had extended thief friend’s life by a couple of years).
But when I told my Mum’s carers, one of them said that nothing could be prescribed for MS and that this person had another condition because MS doesn’t shorten life.
In the next couple of weeks I’ll go to our gp with Mum and ask for a referral.
It seems like Mum’s fallen off the radar and she’s been left with just painkillers and tolterodine.
There must be thousands of people who have been overlooked like Mum all over the country.