Hi. This is my first time in a forum and I’m feeling a bit strange about it. I was diagnosed 2 months ago after 4 years of sporadic symptoms. I have just started Tecfidera a DMT. Side affects are a bit rough but apart from that I am well. I feel like a fraud as there isn’t anything wrong me me at present and feel guilty telling my friends as they worry and feel sorry for me. As a result I’ve just been brushing it off, but that has made me feel lonely. Even though I’m well an MS diagnosis is a big thing to deal with and I’m not sure if I am. Has anyone else had similar experiences? I’m sorry if I sound silly when so many other people with MS are having really hard times. X
Hi PMA101
You don’t sound silly at all, I brush it off myself, frequently. Is there an MS Centre near you? It can be useful just to go in an talk with other people who really do understand what you are talking about, who have had similar experiences and who have a wealth of advice on how to tackle issues that may arise in the future.
As for feeling a fraud - I still feel a bit weird about getting PIP (especially as I work full time and do Taekwondo), but then I look at the multiple receipts for replacement crockery/ glassware, coffee stains on the carpet, pens and pencils that have rolled under the desk where I cannot get to them and the oversize shirts (with buttons done up) that pull on like a sweater, the extra handrail on the staircase and the grab rails in the bathroom and I don’t feel quite so guilty.
hi PMA101
don’t feel guilty.
as teresa said, the ms therapy centres are great.
i go to the one in trafford about 15 miles away.
a great place to make new friends.
although they all have ms it is not depressing.
carole x
Hello PMA101. Welcome to the fun house. I denighed this shit for a decade. Almost another on it’s still not totally got me. My family never talk about it, just my wife really. There are worse cases out there, but there’s no rule book to go by. Not on DMD’s, but Paolo always saying I should be !! Day at a time. Andy
Hey.
This is my first post but you actually made me feel a bit relieved. It just shows that not everyone has it bad and it truly is a different experiece for everyone. I am not fully diagnosed but expect to get the a MS diagnosis shortly. I have some tingling, occasional pain in my back and I had sight problems for 3 weeks which has gone but apart from that I generally feel ok. I guess I worry more about the future and what might come. Dont feel guilty - be happy - live your life to the max
Yeh guys. No need to feel guilty about not being badly affected by MS.
Your positive reports will ease the fears of those awaiting a diagnosis, or the newly diagnosed.
Not everyone has the need of a wheelchair, or is house/bed bound.
Pollyx
I concur with the others. I too am on Tecfidera. Worst I have is hot flush now and then so I am lucky compared to you. I know there is a saying that there is always someone worse off than you and to a degree this is or can be helpful when feeling low but on the other hand sometimes you need understanding for how MS affects you irrespective of someone else being worse than you. In your world you feel worse with MS than you did without it so you deserve understanding and compassion. This forum is a great comfort to me as a newly diagnosed chap. I feel able to talk about how I feel when I want so please take comfort from my experience of this forum and post away as often as you need to. I wish you all the best, regards Trev
Thank you so much to everyone for their lovely comments. It makes me feel so much better and that I’m allowed to feel crap about being diagnosed with MS even if I’m well at the moment. theresaB I know exactly how you feel about breaking things. At one point my husband suggested we get paper plates as I’d broken so many of them!! wibbly Wobbly you sum it up so well that I do feel worse with MS than I did without it and looking at it like that I’m sure everyone would. Thanks also for the advice about MS centre I will look them up to see if there are any near me. It’s great to have all your advice. Best to everyone.