I’m new to this forum and not really sure what I’m here to say… I think I just need some advice / reassurance.
My husband is 34 years old and is otherwise fit and well. We have two children, a four year old and a 17 month old.
Basically, my husband had an MRI and the neurologist said there are around 10 patches of inflammation on his brain which given his symptoms is most likely MS. He has referred him for a lumbar puncture which is due to take place in just under two weeks time along with blood tests. Symptoms are; balance issues, stumbling, pins and needles in right hand and right foot, headaches, ‘dancing eyes’ tiredness / fatigue.
We were so scared thinking he a brain tumour or something then to be told it is MS we felt relief (at no brain tumour) but also worry as we didn’t really know what MS was. We have since researched a bit so find out as much as we can and what we can do to to relieve the symptoms.
I guess the point of the post is because we don’t know what to expect, what does the future hold. How bad is this likely to get? Am i going to lose my husband… Are my kids going to know him as he is now or only as a shadow of himself. Everything feels so uncertain and scary.
Sorry if I’m not making much sense, my head is spinning with questions. I guess I’m just scared about what’s to come.
I’m sure that you are feeling a bit scared. There’s nothing like a bit of Googling to put the wind up you. It’s likely that a lot of what you’ll have read is not up to date and paints a pretty black picture. This normally isn’t the case.
The development of disease modifying drugs is a continuous process and more is being learnt all the time. These are compounds that slow down or halt the progress of the disease, so your husband is going to be around for his natural lifespan. The way he is today will, in all likelihood be the same as he will be in one, five or ten years. There are no guarantees of course but that is the generality.
So, no you will not lose him and your kids are going to grow up with their father. The only thing I can say is that your husband will have to adapt to changes IF necessary. But then all four of you are going to have to do that over the course of your lives and that has nothing to do with any disease.
Don’t stop planning for the future just because it’s not the same one you were expecting. But that goes for everybody, regardless of whether they get diagnosed with MS or not. And whatever happens, you have this Forum. It’s members have a vast repository of experience, wisdom and empathy.
You’ll never be on your own whatever the rest of your life throws at you.
Thank you so much Anthony. You have certainly put my mind at ease. I think its the not knowing or understanding MS + Google = panic! I understand there will be changes to be made, he is struggling now with the tiredness so I am making sure he gets some rest and time away from the kids. His lumbar puncture has been brought forward to tomorrow morning so hopefully we get some more information soon. Thanks again for your kind response. Anna
I was going to just echo what Carole said. Anthony did give you a warm and comforting answer. All I would add is that the best places to look for information about MS are this site and the MS Trust. Both have reliable and accurate information. Sometimes if you google symptoms you frighten yourself silly.
We live in a world today where there are lots of drugs available to reduce relapses and their severity. Most people are at least initially diagnosed with the relapsing remitting variety of MS, so he should be offered a disease modifying drug (DMD) to help with relapse reduction.
Don’t worry too much. MS is a pig of a diagnosis, and to be fair, you’re not even right through the diagnosis period yet. (Although I suspect the lumbar puncture is more of a belt and braces type test rather than a necessity in your husband’s case.
When you have further questions, worries and/or just need a bit of moral support you are most welcome to ask us. If we can help, we will.