Hi, I’m Karen. I’ve been lurking for a while now but got my diagnosis today. SPMS/Ppms. It’s been a long time coming as I’ve been having walking problems for at least six years and other symptoms for quite a few years but I’m going to get an ms nurse and physio now. This is a really good forum and I’ve learnt a lot over the last year or so from you all so I’ve decided to join in now and hope I can give good advice to others as well as learning more.
Sorry you are here, but welcome to the Forum.
Hi Karen, … and welcome. Your MS Nurse is going to be invaluable. They can open all sorts of doors to referrals and services as well as keep an regular eye on you. This Forum, as you know, is a great resource in itself. There is a huge store of experience, wisdom and empathy here; and you could even make some new friends. I know I have. Best wishes, Anthony
Welcome to the forum, if not to the diagnosis. We’d all be happier without it, but once diagnosed, the forum is a massive bonus.
At least, now you are diagnosed you have access to an MS Nurse and physio. Both are massively important. The MS nurse can be invaluable in talking through symptoms and drugs as well as other ways of dealing with the crap that comes along with the diagnosis.
The physiotherapist is equally valuable. If you can get an exercise program sorted, the future might be a lot better than without it. Try to keep your fitness level up, in particular your core, it pays dividends in years to come.
You are free to come back here whenever you like for help and advice it does take a while to get your head around the new diagnosis. But whatever you need, we’ll try to help.
Best of luck.
Thank you all for the warm welcome Karen
i am newly diagnosed too!
As yet , I don’t have an MS nurse mainly because I decided to go for a private consultation and scan ( I am not rich but the wait to see someone was driving me mad). Anyway apparently there was enough information on the scan to give the diagnosis of MS. I await a lumber puncture and I presume after that I will be put in contact with an MS nurse and perhaps be started on medication.
Anyway, I’ve been told that the MS nurse can give help and support. I’m sure you get this with your MS nurse.
Hi Gee 1…the wait is so hard isn’t it. I first went to the doctor with my leg and walking problems about seven years ago and gave up after a year of being passed from pillar to post. Tried again last year when things got worse and finally got an mri and lumbar puncture. At least we know what we are dealing with now and I can tell people that I wasn’t lazy…i had ms fatigue,!! Karen
I gave a wee grin when I read your last sentence . When I got my news my sister was with me and that was something I said to her ‘ I told you so and I wasn’t neurotic’ . Very slight relief at having a reason behind the symptoms especially the hidden ones (fatigue and depression). . Even my colleague at work were surprised… I had the comment ‘you look well though ‘ . Jings if only they had half an idea of what it’s been like. No actually I wouldn’t wish that on anyone. Mail me anytime Karen. I’m never far away!
Thanks Gee 1. Sorry to hear you’ve had depression, I’ve been lucky to not have that but the fatigue is awful. I’ve also sprained my ankle 3 times this year… very painful. I’ve got a walking stick today and I’m going to test it out at the NEC motorbike show tomorrow, then I’ll probably need all day Friday to recover from all the walking. Karen.