Hi Maitha,
I can understand your worries for your sister, but I’m very concerned that your plans for helping her include removing her from the UK, in hope of a “different” answer, and alternative remedies.
Why do you believe the UK tests are wrong, and need verifying in another country? I can tell you the UK criteria for an MS diagnosis are very strict, and it’s unlikely she would have been diagnosed unless the clinical evidence was compelling. The same goes for Rebif: the conditions to get on it are pretty strict. They won’t give it to people who “might not have MS”.
MS is certainly a bad card to be dealt, especially at such a young age, but most people do NOT die of it, and not all are seriously disabled. Mnay people marry, have children, and work with MS - you should not automatically assume your sister won’t be able to have any of these things. Her life will be different, but it’s NOT over, so you need to stop crying all the time as if she had died, and start thinking about how you best you can support her - which I’m afraid does not include denying her diagnosis, subjecting her to unnecessary tests to try to get a different diagnosis, and starting her on controversial and unproven treatments.
There are certainly many people and organisations round the world, willing to part desperate people from their money, on the promise of a “cure” for MS. Don’t listen to these scammers. You will end up poorer, but your sister will still have MS.
China is not a good place to look for answers, because MS is extremely rare in China, so there won’t have been a lot of research or experience in how to treat it. If you want the best knowledge and treatment for your sister, then look to places where MS is common. The UK has one of the highest rates in the world, so there’s no shortage of evidence or experience
Your father is correct: if your sister has been diagnosed and has commenced treatment, there is no need for further tests and MRIs. Sometimes, they do do another MRI to assess how well treatment is working, or if a decision needs to be made about switching to a different treatment. But most people don’t need further MRIs very often, or at all.
If she’s cooperating with the injections, I guess, at some level, your sister does accept the diagnosis? Why would she take injections for a disease she doesn’t believe she has? It’s OK if she doesn’t want to read or research about MS at the moment - it’s only been two months. Some people want to know everything straight away, but others need more time to get their head around it, before they start looking for answers to their questions. Being hit with too much information too soon can be quite frightening (especially as some of the awful things you read about MS might NEVER happen). So your sis needs to take it at her own pace - there is no rush.
Be very careful about online info. This a safe and reputable site, but not all of them are, and there’s some shameful nonsense about MS out there. Remember that, even on reputable sites, there is a tendency for them to be visited by people who are worse affected, or who have a problem at that particular time. That may give a distorted view of how MS is for most people, because those who are getting on fine mostly won’t post to say so!
I do wish you and your sister the very best. Perhaps, when she feels ready, she would like to come here herself, and talk to others who have it - but that must be a decision for her.
Tina
. no one want to understand that shes effected not either my father he said shes ok and no need for more test and MRI’s …