Hi I’m new here and looking for some advice on things you wish you knew before diagnosis. Practical things really like life insurance, critical illness, private health insurance or other stuff I haven’t thought of. Are there any disadvantages to having a firm diagnosis?
I’m anticipating a diagnosis if I return to the doctor with symptoms. I’ve had a bit of an unusual journey to this position where I basically feel I have a “choice” if I go and seek diagnosis. I had numbness, tingling down left side & visual disturbance in 2016 there was concern I might be having a stroke so got lots of investigations got MRI and they found lots of white lesions and some ‘black holes’ old ones. The neurologist (not MS) specialist said I have Radiologically Isolated Syndrome so my brain looks like I have MS but he didn’t think my symptoms tallied with a true MS clinical episode and said I’d probably got 1/3 chance of develop MS based on latest studies. I’ve been debating a lot about getting a rescan have been taking lots of vitamin D as a precaution and have just carried on as normal (apart from reading a ridiculous amount of literature). Anyway this past week I’ve developed tremors in my right hand and numbness down my right side, had bad session of vertigo and feel fairly confident 2 years on I’m having a ‘relapse’ albeit very mild and manageable symptoms. I think I’m lucky in a way as I’ve had the scan in 2016 I’m hyper alert for symptoms. I think otherwise I can see why so many might struggle to get a diagnosis as these initial systems are very mild is never have noticed or connected them I don’t think. Anyway, so I feel it’s time to go back to the GP and referred back to neurologist and rescan etc… but have been putting it off… keep thinking there were so many things I wish I’d known before my first MRI (eg now excluded on critical illness cover as I hadn’t taken out any beforehand etc) just wondering if anyone else had any reflective ‘wish I’d done xxx’ before getting affirmative diagnosis?
thanks for your time xx