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?
If he has all the symptoms and has lesions and has had all the tests, why are they not diagnosing him? I would think that it can only be because these things do not support the diagnosis of MS or that your brother is not seeing a good MS specialist.
There are hundreds of conditions that cause symptoms very similar to MS. For example, kidney disease can cause neurological symptoms. Could everything actually be due to the kidney disease?
You say that your brother has lesions - exactly what does the MRI report say? What about the other test results? Exactly what do the reports say?
If you want to get answers, you have to scrutinise the evidence and then confront the people who should know how to put it all together, i.e. the consultants. Ask precisely what the results mean, what they have ruled out, what they are still considering, what other tests are possible, what other specialities should be consulted, etc. Don’t accept waffle and dumbing down. Ask for everything in writing. If they are saying MS, but they won’t diagnose, why won’t they? And are they consulting with the best MS specialists to determine that?
Some things aren’t diagnosable - we just don’t know enough about the brain - but the medics owe it to us to do everything they can to get us as close to a diagnosis as they can, and to keep us fully informed en route.
Good luck and I hope you get some answers very soon.
Hi, I am so sorry to hear how badly your brother feels.
These neuros dont realise how we feel when we go undiagnosed for years.
I was the same. Saw 13 neuros in as many years and still dont have a definite diagnosis.
Your brother`s condition sounds horrendous. As Karen says, you need to see someone who can talk openly about how all this is affecting him.
I voiced my discontentment (in a quiet and respectful way) at having no diagnosis and then it being changed from PPMS to HSP and back again.
My comments were taken badly and I believe I was refused an appointment with an MS specialist, plus other things which happened, because I of my speaking up.
I do hope you get some answers very soon.
You have to convince the medics that all this is having a detrimental effect on your brother (and the rest of the family too)
Bless you for being so caring.