In a Spin

New diagnosis and before diagnosis
1

So where to begin…

My wife has been having ongoing medical issue for the past 2 and a half years, we have seen all sorts of consultants all across the country but most of the investigation has been around her bladder and we have been seeing a good urologist. We were told that MS can effect the bladder and an MRI of the spine and head may be worth doing, in all honesty after so many tests and scan but no answers we didn’t expect anything to come of it. We went to the follow up appointment on Saturday to be told that she has around 5 or 6 lesions on her brain that points towards MS, we have not had this confirmed yet by a neurologist but the GP also agrees it looks quite possible, my gut feeling is that both are confident that it is MS but do not want to say for sure? As with other posts I have seen, clearly it has came as a massive shock to us, my question at the moment which in all honesty I don’t think actually has an answer but I have to ask anyway, how do we all cope with the news?

My wife is 34 and we have two children who are 2 and half and 6 years old. I am as the husband and the dad should be the glue, the one who holds it all together, the rock, the one with all the answers but I don’t and am not sure if or how to find them, I think it is one of the situations where the only thing to help may be be time, time and answers from the experts? As it is we have no diagnosis although I think we both know what we are expecting to hear, obviously the children do not know and even if they did they wouldn’t understand but it is how I help my wife. None of what I am writing is anything I wouldn’t expect from someone getting this news but it is how I help her move forward, currently she is quite angry at the world, quite withdrawn and emotional. As with anything she spends quite a bit if time researching and trying to find friends of friends that are experiencing and living with MS but that in it’s self brings very mixed results with good stories and bad stories, good information and bad but she has such a thirst at the moment as I am sure most people newly diagnosed with MS do for information.

As I said before I think from what I have read the main issue with MS is the uncertainty of it all, how will it effect you, your life, the people around you. How will it develop and effect you, will the drugs help the symptoms, when will the cure be found… The truth I think to nearly every question, every statement is pretty much the same, no one knows not even the best neurologists in the world.

So all this being said I think my question I have answered myself, the answer is what will help is time, hope and support, that is what I have to help and I will use them as well as I can.

Assuming you have ready through all of my waffle then thank you and any advice you may have to offer would be greatly appreciated.

2

Hi to both of you and I am sorry that you feel so overwhelmed by all this but I can perfectly understand how you feel. I too am awaiting a diagnosis and find it very frustrating. Any time you want to chat feel free to message me. Regards David

3

Two bits of advice.

No.1 Don’t try to keep it from your kids. They know that something is not right with their Mum, but if the adults keep avoiding the issue they can only come up with their own solution to the puzzle, which can often be more frightening than the truth. I’m waiting on a definite diagnosis myself but when my eldest brother was diagnosed he was angry, withdrawn, in full blown denial and his then wife was pregnant with their second child with a 2 year old to take care of. As his symptoms progressed however, it became necessary to tell the boys, in terms they could relate to, why their Dad couldn’t do certain things or why Dad was sometimes so tired, he couldn’t get out of bed. The boys are now in their 20s and both say that before their parents started to explain things to them, they were really, really scared [even going to the lengths of flushing all my brother’s medications down the toilet because they believed their Mum was trying to poison their Dad!]. I believe there are booklets/pdf sheets for explaining MS to children available through this website. They might help to find the right way of explaining MS to your kids.

No.2 Don’t try to do everything for your wife to make things easier for her - If she appears to be having difficulty ask if she’d like some help (do not just take over the task), if she says ‘thank you that would be great’ then fine, go ahead and help, if not - then take yourself off to another room and let her get on with whatever she is doing.

4

I think that’s about right.

There isn’t any way of making you and your wife OK about all this right now. It is a worrying time, and one of those things that just has to be got through. The not knowing is awful. Once you find out for sure what is the matter, even if the news is not good, you can start to deal with it and that is when time is your friend, as you say. Once the initial shock passes, a person can start to get accustomed. Do not underestimate the power of a busy family and working life to help normality to reassert itself. And hope also, as you say - hanging on to the hope that you will both find a way through this anxious time and be able to enjoy life again. Even if it is MS, that will happen.

Good luck.

Alison