Hello and hope everyone is well? Well I got my official ms diagnosis last Wednesday and its ok, I think! After 3 1/2 yrs of being told ‘probable’ at least the family now have to try to understand. My lovely husband is still having a hard time accepting it but the ms nurse is going to do a home visit which I am sure will help. I am well, but wobbly sometimes and expect to spend more time on here and hopefully get to know you all. With best wishes Sue x
Well I’m not sure if I should say congratulations?! but it at least takes the guesswork out of it all and now you can put a definite name to it.
I hope to be following in your footsteps in a few weeks as have my Consultant Appointment and am hoping for diagnosis.
Take care x
Welcome Sue! It sounds as though you’ve had some time to prepare yourself, although it’s always difficult when you finally hear it in black and white! Sounds like you’ve a supportive husband and I hope the ms nurse home visit goes well. Tricky, I hope your appointment gives you the information you’re looking for. Please let us know how you get on. Having only just received a diagnosis, I can sympathise on both counts but I have to say I’m amazed at how far MS treatment has come - I had no idea how effective some of the medications can be (I’m not taking any myself as yet) and with stem cell research in the news just today I really am positive that vast improvements and even a cure are around the corner. My best wishes to both of you xx
Hi and welcome to the forum.
Although you suspected MS for a while, it can still be a blow to actually be told you do have it.
Your hubby may have read some info, or talked to folk who know someone with MS and have all sorts of possibilities going round in his head…and therefore feel very frightened for you.
I think it is a very good thing that the MS nurse is visitng you at home. You and he will feel more relaxed in your own surroundings and do make lists of questions whenever one pops into your minds…as you could easily forget them when she comes.
Pace yourself when it comes to activities and get plenty of rest.
Hi Sue and welcome… …glad to hear you know for sure now. It’s easier than being in limbo.
It can be a rollercoaster at first… even though you suspected it for so long… you will still get the ‘OMG’ moments. Try to go with the flow… allow yourself to feel the emotions, even the sad or angry ones. Share your feelings with your husband & encourage him to share his.
And remember you have a great group of people on here who know what it’s like.
Take the ‘one day at a time’ approach & as Poll says, pace yourself and get plenty of rest.
Glad to hear that you’ve finally got some closure. No matter how much we’re expecting it, it’s not the easiest of things to get our heads round (for us and for our family members and friends) so take it one day at a time and be kind to yourself, and each other. Karen x
Hi and thank you all for your replies! It is great to be able to share worries, concerns and thoughts with those who have gone through/going through the same thing. I do feel a bit ‘lost’ at times. I am mostly ok at the moment with just some numbness, tingling, a bit of stumbling etc., the thing I find harder is the loss of concentration, forgetting what I am saying half way through a sentence and my mouth stumbling over a word. My gp says this is not the ms but stress (just been put on antidepressants) but I am not so sure. Do any others have the same thing? I am trying to pace myself but sometimes feel pulled in all directions. I feel like saying ‘stop the ride, I need to get off.’ Maybe a weekend away is in order Best wishes, Sue x
Hi Sue, Concentration problems, word searching difficulties and slurring speech etc are part and parcel of the cognitive problems that many MSers suffer from. Unfortunately, many GPs have loads of gaps in their knowledge regarding MS. During training they probably only spend a short time doing a neurology rotation, so it’s hardly surprising, I guess but not very helpful. The best person to ask about these things is probably an MS nurse. Do you have access to one? They can be very helpful and act as a great support - if not write down things that crop up that you need answers to ready for your next neuro visit. Take care, Teresa xx
Hi Sue, Sorry you have got a positive Dx but at least you can move forwards now that you know. As the others have said you will get your up days and down days, remember we are always here to listen. Keep as well as you can. Janet x