And… it happened. I got married on Monday and 2 days later I received the letter that confirms I have MS. I am now waiting to see the MS nurses for the first time, also waiting for some recent MRI results, and a Board (or something) will meet to discuss DMT for me.
Optic neuritis right eye: 2020
Numb hands: May 2022-December 2022.
History of 3 MRIs show lesions in the brain and spine.
I currenly have no relapse.
The MS is the cherry on the cake. I am also infertile, and at 43, chances of having my very first baby naturally are slim… so I am discussing IVF. Not sure if the egg will be mine or a donor egg yet. I have a lot to consider. I prefer mine.
What makes me infertile? Well, my progesterone is not working properly, but what is worse is my prolactine which is a bit high. I was told that there is research out there that prolactine is high in many female MS patients.
My husband is supportive, I really hope he doesn’t run for the mountains in the future if my health declines. I think that many MS patients live with the fear of a divorce as well.
So far, my sister knows. I will not tell my parents, ever. They live abroad anyway, they are quite old, and they will not habdle the news well. My husband knows of course. I won’t tell my friends, I won’t tell work. I worry that they will make excuses to terminate my contract if they know.
Just wanted to share. Surprisingly I am not depressed. I am not in denial either. I think that subconsciously I knew, since the optic neuritis that this moment would come. My brain has already processed the news over the months and years…
I am sorry about your diagnosis. Even when one can see the way the wind is blowing, the finality of the actual diagnosis can still come as a shock. Don’t be too surprised if you find yourself reacting in ways you did not expect.
It is good that you have a small but supportive team (your husband and sister) with you on this one. It is an awful burden to carry alone or even with only one person, and it is good if you have a few confidential friends who can offer support when you need it. I hope that your husband has a confidential friend of his own too. He also need someone to confide in, as he will have worries of his own and may not want to (as he might see it) burden you with that. Getting on a DMT sounds like a very good idea. I hope that you make progress on that soon. You might have to have some difficult thinking to do on that score about planning a family, as I did and as many of us have had to. I am sorry that you have so much on your plate just now.
Hi Maria. A formal diagnosis at any time is tough but a couple of days after your wedding!
I (a male) was about 10 years older than you when diagnosed - after an episode of optic neuritis. If it gives you some hope for the future then 17 years after diagnosis I’m not doing too bad! Use a mobility scooter for any walking over 15-20 minutes or so, and I can get tired (fatigued) from time to time. Probably not as ‘dexterous’ as I used to be and some times feel a bit unsteady- lose my balance a bit but haven’t fallen.
Pleased to say my wife shows absolutely no signs of heading for the hills - and in fact at the moment she relies on me for help after tripping, falling and breaking her shoulder.
In general I tend to follow a lifestyle and diet around the idea that what is good for the heart is good for the brain. In particular, I follow the suggestions to be found in the website and book of ‘Overcoming MS’ i.e Exercise, diet ( especially reduce saturated fats, increase unsaturated) and meditation/ mindfulness ( avoid getting stressed). I suppose my general thinking is that DMTs should reduce relapses etc and it’s up to me to keep my brain as healthy as can be .
I did tell my employer - but first checked things like employment rights, employer responsibilities in respect of disabilities (MS being a recognised disability).
Just wanted to say thank you all for replying. I feel better knowing that I am not alone. I am gradually developing some coping mechanisms. I think I will start with following MS society on Instagram. I have also decided to change my diet to a healthy Mediterranean option. I am not sure it’s worth joining a gym but I may start using the outdoor gym in the local park. Thank you all.
I did join a local Council gym. I joined because it was free for people with MS and the like , it was new(ish) had a good swimming pool and was just a couple of miles away. From what I remember I was sort of referred there by my MS Nurse and had an initial chat and assessment by the staff. Stopped going during the pandemic and won’t rejoin until the current variant dies down a bit. However, it might be worth seeing if anything similar is available in your area?
Congratulations on your marriage!
I am sorry to hear of your diagnosis.
Just to say that my prolactin was also high- do you take medication for it or know the cause? I took Bromocriptine and managed to get pregnant naturally (although I am younger).
Wishing you all the best.
We did an MRI to find out the cause, and I am now waiting for the results. I suppose that the endocrinologist will give me some medication. I will see her on Monday.