It’s been 5 years for my brother. Endless trips and stays in the hospital, kidneys shutting down. They say he has all the symptons, he has the lesions, had all the tests. Now his brain is involved, like he has schizo. Talks nonsense. Permanent catheter, no bowel control. He’s now so frustrated and fed up he talks of giving up. He’s been to the “big” hospitals. The ones with the top notch doctors. But enough already. What does it take to get some treatment and even more a diagnosis. They all seem scared to death to confirm it. He only takes epilin and something for his kidneys and sleep. Doesn’t this seem a bit extreme? We are watching him turn in to a crippled old man and he is young. Can you offer some advice?
That sounds like a nightmare, I can only imagine how hard that is for you all. For many of us, diagnosis can take a few years. For some of us though it’s pretty quick, and as soon as I had an MRI scan that showed the lesions, my neuro confirmed it was MS. It may be that there are other things involved that are causing people to hold back from diagnosing him, for example I’ve not heard that kidney problems are associated with MS. I would try & speak to a neurologist to ask outright why they don’t want to confirm it.
In terms of getting put on the DMDs (things like Rebif or Tysabri), there are specific qualifying criteria - things like a certain number of relapses within a certain time frame. However, for medication to treat specific symptoms like pain, you may not need a confirmed diagnosis, so it would be best to speak to his GP for things like that.
I hope you’re able to get some answers soon though, and the help your brother needs.
he has spent alot of time on the falling, found on the floor, constant bladder infection backing up to his kidneys, being zoned out, not remembering, acting like he has schizophrenia, he has the lesions on his brain. for some reason the uk docs fail to put a name to it. he feels like “ending it all” then they discharge him from hospital. our feeling is if they wait much longer to do anything he won’t be around.
Oh dear, this is so sad. No wonder your poor brother feels so bad. I spent years going for tests and seeing 13 different neuros!
PPMS was on the cards for much of that time. It was finally discounted last year. I have a half diagnosis…spastic paraparesis, cause unknown! I may never find out what is really going on. I get very frustrated and angry about it at times.
it sounds like your brother has something other than MS…or perhaps MS and something else. Do you think it would help if he had counselling?
Sorry I cant offer any medical advice, except to say that I hope you can find a way to make him see how much he is loved and needed.
he is on the radar for a psyc assessment but with the NHS track record thus far who knows when that will happen. it takes so long to get an appt then to find out the results. and best of all he is near london and going to the supposedly “top” docs. is this normal for the uk? the admitted to misdiagnosing him with ADEM to start. but now he seems to be stuck in limbo. we feel as though we are losing him rather quickly now.
ah poor you and your brother
get his gp to focus on the bladder infections because they make people go loopy
has he been given anti biotics? sometimes your doctor needs to change the anti biotics because there are different infections that respond to different anti biotics
please make him understand that we all know how rubbish all this is but to hold on in there because life is still worth living.