Some might know that not only do I have MS but also my sister and first cousin.
My sister was diagnosed around 15 years ago, at first the doctors thought she had Meniere’s Disease, an inner ear condition, for which she was treated for many months, coincidently everything seemed to settle down after a few months, but a year or so later she lost all use of her left leg, was taken into hospital and then the MS ball started to roll, basically the Meniere’s Disease turned out to be the start of the MS and not Meniere’s at all.
Over the years she has had maybe 2 relapses, which although not massive relapses they did put her in hospital for a few days and also onto a course of steroids.
Then about 6 months ago she had another one, which again put her in hospital, but even though she was out within a few days her symptoms didnt fully go away, but she was managing, 8 weeks ago she had yet again another one, this time it has totally wiped out both legs, bladder control, bowel control, speech & hands, even her thinking and communicating is all the place.
The hospital initially thought the had had a stroke, she was taken in, put on steroids and sent home after a few more days in hospital.
Last week she had her follow up with the consultant (same one as I have), he told her he thinks she is still in the relapse and because she has now had 2 relapses close together she will be going onto DMD’s.
Since seeing the consultant last week she has dramatically deteriorated, she can hardly speak, communicate and has terrible involuntary movement, to the point where she has caused severe bruising to her face, arms & legs, she is constantly crying, hardly eating and her bladder control is non existent, she also has not emptied her bowels in 5 days, things are dreadful at the moment for her.
Her husband (diabetic), is trying his best, but this relapse is so bad he just cannot cope.
He’s afraid he’s doing more harm than good, because even lifting her onto and off the toilet is causing her to fall and knock her self.
She just cannot do anything for herself, both hands have locked up like claws, her face has actually dropped a bit, like a stroke so she’s having trouble eating and drinking.
He’s dragged the mattress from the bedroom upstairs into the living room to try and make things easier.
THIS DAY & AGE NOBODY SHOULD BE LIVING LIKE THIS !
He rang me last Friday around 4pm in a terrible state, he had been trying for over 6 hours to get a doctor to come out, but they had still not rang him back, he had also rang 999 and unbelievably was told “we will send an ambulance but because it’s not life threatening it could be a long wait” .
He also rang the MS clinic but they told him that they have no power to admit her as it’s only her GP (who still hadn’t rang back) could admit her or the ambulance, (that had still not arrived) .
In despair he rang social services they also tried to get hold of her GP but gain no immediate joy.
Finally around 6pm the GP rang them but could not call until later to see my sister as she (GP) was covering 3 separate areas on her own !!
9.30pm Friday night my sister was admitted to hospital, she had to wait until 3.00am in the back of an ambulance until they found a bed !!
So anyway at the moment she’s in hospital, not very good at all, but at least she’s there !
One of the doctors at the hospital thinks she could have had a relapse on top of the one she had just 8 weeks ago, they are arranging an MRI, and are also trying to deal with all the other symptoms brought on by this awful relapse.
And I get so annoyed when GP’s do not understand how awful a relapse can get, and this one is particularly bad.