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?
Your post chimes with my experience, even though it all happened faster and more non-negotiably in my case. I really feel for you.
The putting it off instinct is very human: isn’t it odd that, even when we know intellectually that there is no benefit in putting things off, we still have to fight ourselves to get past it?
Perhaps another way to look at it, though, is that our subconscious mind is good at knowing when the time is (or isn’t) right for something. Maybe your subconscious knew it had a bit of background prep to do before you were ready to step closer to a dx. And maybe part of that prep has been facing up to the things that you wish you had done before (believe me, I share your pain on the critical illness cover point…) and acknowledging them before shoving them in the ‘water under the bridge’ bin and slamming down the lid.
Well Anon, life is full of “if only”. I try to turn it around, and be grateful for what I managed to get done before my diagnosis.
As for the critical illness cover, mmm. Yes the money might have come in useful, but if you do get the ms diagnosis, you’ll manage. We all do. It doesn’t change the circumstances and won’t lessen any symptoms or progression. It’s a bit like any other type of insurance…never see the need for it, until you need it!
Chances are that any insurance you get now wouldn’t pay off on diagnosis as you’ve already had tests that could indicate MS in your future. Bloody insurance companies will find a way to wriggle out of anything!!
I wish I’d bought a house with critical illness cover before I’d ever had any MSy type symptoms. Right back when I hadn’t even dreamed that MS was in my future. But as everyone else says, it wouldn’t make a big difference to my life. Money’s not everything.
On the plus side, after I’d had the first tests which could (probably should) have given me a diagnosis of MS but didn’t, I took a whole load of risky decisions in my career and personal life that I’d probably not have taken were I to have the diagnosis earlier. So instead of remaining in a nice ‘safe’ boring job, I went for the chancey route, worked all over the country, did just as I pleased and enjoyed my life.
So in your position, I’d try my damnedest not to worry too much. Don’t live your life as if an MS diagnosis is definitely going to come, and enjoy yourself. Travel more, do more, get fit and love life and health.
Thank you all so much for your replies! I love your positivity and thoughtful replies! It’s an odd thing awaiting a label, I imagine for others it can be a kind of closure to the worry of unknown symptoms so mine feels a bit topsy turvy! I guess I feel there has to be some kind benefit to me returning to the GP and reporting my symptoms returning and to then go through the motions to get a diagnosis and I guess that benefit is starting treatments early when everything is mild (that looks to be a minefield of learning!) but I just like to plan stuff to the nth degree where life allows me!
I really appreciate you all taking the time to reply! Thanks all xx
Just to add my penny’s worth! I was DX with MS, in 2012… MRI confirmed it! Actually, my my clever son with his Chemistry Degree enlightens me. It’s actually NMRI (Nuclear Magnet Resoning Imaging) its true chemical terminology!
Yes… We just have to make the best of the cards we are dealt with!
Live everyday as it comes. Of course, we probably have times, and we sure do… think we are just changing deck chairs on THE TITANIC! so welcome aboard!
This particular web sight seems to have a good bunch of folk with this condition ‘Multiple Sclerosis’ & have a wealth of useful knowledgeable info.
I sincerely hope it’s nothing too sinister for you?
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
[/quote] Hi, after 20+ years of inexplicable symptoms I have just been diagnosed with RRMS - my physio noted “neurological problems”and referred me to a Neurologist. Brain and spine MRI with contrast followed by VEP test showed multiple lesions in both brain and spinal chord with inflammation on brain too. However frightening this is, I now feel I can traction on this condition and plan forward. Just finishing 5 day course of high dosage steriod which has been miraculous in terms of fatigue and promoting clear head. In my opinion, no negative to gaining a diagnosis although I imagine a chronic condition won’t be received well by my insurance companies!
xx