I haven’t been on the forum for a while but have popped in and have found everyone’s posts helpful - makes you feel that you are not alone. Well I have received a diagnosis today and although I was expecting it I still feel slightly numb - keep trying to tell myself that nothing has changed and what has been happening to me has finally been given a name - in fact the Neurologist who is so helpful and has been fantastic throughout actually said ‘see you are not imagining it’.
I have had symptoms of tingling in my legs, L’hermittes (? is that how you spell it), balance issues which have been getting worse along with a long list of other things that made me realise things were not right. Have had several MRI’s the first of which showed some lesions and now this most recent one last month has shown new lesions and a diagnosis today.
So, now I enter a new phase - waiting to hear from the MS Nurse and the one I am not looking forward to is telling our daughters, family & friends. The neuro said I am not eligible for some drugs (that I can’t remember the name of - my head was not taking anything in at that point) so I will stay on the amitryptiline and see what the nurse has to say. Take it a day at a time and see what happens next. My husband has Parkinsons disease - we are both in our 50’s and we have just said “bring it on”.
You will have very mixed emotions at the moment. Take it easy and be kind to yourself.
I find my ms nurse very helpful so she will be able to help with any questions you have. It’s very hard to take it all in on your own so might be a good idea to take a friend/relative with you next time so you have two pairs of ears.
Medication for MS depends on the type of MS you have been diagnosed with but your nurse will explain all that to you. If you have any specific questions you can post on here and people will try to help.
Getting an MS diagnosis can be a shock even if you were expecting it. Take it one day at a time.
I am sorry you have joined the club. It is always a shock to hear the news, even when it is not a bolt out of the blue. You and your husband will be getting good at dealing with unwelcome news from neurologists. Life can be very rough sometimes, but love and teamwork provide the best possible defence, no doubt about that. You are giving yourself some excellent advice: follow that, and you won’t go far wrong. As you will know already, a person can make a good life for herself with MS: it is not the end of the world.
I hope that the business of telling the family is not too gruelling. It is bound to be difficult, dealing with the reactions of those we love even as we try to find our own bearings in strange waters, and there bound to be a lot of strong emotion swirling about. I hope it goes OK, but don’t worry if things feel haywire for a bit. It takes everyone a while to deal with this sort of news.
I just wanted to echo what everyone else has said. I was diagnosed a week ago and am still in daze, but everyone on here is so kind and helpful and let you know you are not alone
Hi, I’m sorry to hear about your dx - time will help you get your head around it but it i’s a shock to begin with. Look after yourself and lean on your loved ones. I am sure you and your husband will be great help to each other as you’ll both be able to empathise. Take it day-by-day atm. Thinking of you, Teresa xx
As above really. It’s never easy to hear the words multiple sclerosis, but life goes on nonetheless.
If you haven’t already, do check all your paperwork for any critical health clauses. If you have one, a payout for MS might make life a bit easier.
The MS Trust and MSS do some excellent, free booklets about MS - they can be very helpful when explaining things to friends and family. You can download them or order hard copies.
Take it one day at a time, and be kind to yourself. It might take a wee while, but you’ll be OK.
Many thanks to you lovely people for your kind, supportive and helpful comments. They are very much appreciated. Xx think it will definitely be a day at a time xxx