Hi there. Just posting to say hello, was diagnosed last month after three MRIs showed extensive lesions in brain and spinal cord.
Have had various symptoms for last four years, been under a headache specialist for chronic migraines, rheumatologist, gastroenterologist…and then earlier this year a newish GP decided she was going to start investigations untill she got an answer, so here I am .
What I’ve been doing over the past six months is reading all the info available on the MS sites, so my diagnosis came as no surprise infact it came as a relief, which I know some of you will understand.
However, what I want you all to know is that the biggest source of help, support, inspiration and insight has come from all of you here. I started at the beginning and read through all the posts up to the present day. Infact I think it should be prescribed for all new PPMSers as a way of gaining invaluable information…who better to provide that than everyone who has been battling with the " beast " !
I am blessed with a fantastic hubby and supportive family, retired last year ( ex nurse ). Not what we were planning for retirement, but when I have read how some of you still try to work and the problems associated I feel quite humble.
You have helped me to accept my PPMS, realise it’s about moving into the slow-lane, taking each day as it comes, pace, pace and pace yourself and REST and to keep positive.
I’m sure I will be back to ask questions and feel I now belong to a very exclusive club.
I’m so glad the board has been such a great help to you. It’s true… we are the experts. And the more you get to know your own MS the more of an expert you’ll become. Acceptance is a HUGE part of it and glad to see you have realised that.
Yes for me getting the dx was a relief as well… at least I was then sure of what I was dealing with. But every so often you might go into a bit of a panic with a voice in your head saying ‘OMG I’ve got PPMS’! Just go with it… it passes and is perfectly normal. I’ve been dx over 5 years and still get it sometimes!
In terms of working (or not) try not to compare yourself to others. Yes some of us work, some of us don’t (I’m in the ‘don’t’ group)… but this isn’t a competition and we all have different priorities and different ways of coping. The important thing is that we are all here for each other whatever our circumstances, symptoms, med’s or anything else.
Very pleased to have you on board. As you can see, this is where you can really be ‘at home’ and can discuss anything… nothing is taboo!
Hello Judith, Glad you’ve found the forum so helpful - for so many of us it helps to keep us sane, especially when we’ve just been diagnosed! Pat’s right - most days will be fine but now and then you’ll have one where you really feel sorry for yourself. You just have to with it as inevitably it’ll pass! Sorry that you’ve had the dx just as you retire. It’s no fun but it sounds like you’ve got fantastic support which makes all the difference. Please visit the forum as often as it helps, we are all here to support each other, to listen and along the way we laugh too! See you again, Teresa xx
I hope you feel at home here and look forward to talking with you, it sounds like you like it here already
I for one think I’d have gone a bit crazy without the support I’ve found here. MS was a shock for me but I was still relieved to have an answer so I understand that one. I think it takes time to fully accept it, last week was a shocker for me even though I was diagnosed a few months ago now and thought I’d got to grips with it.
I think it’s really a case of taking the rough with the smooth and it’s very rude that MS should interrupt what’s supposed to be a REALLY happy and relaxing time of your life, starting your retirement. But it could always have been worse (I think that’s one of the things that’s helped me).
Yes, welcome Judith. What you wrote makes perfect sense, and is very similar to how I was feeling when I was diagnosed.
I like how you describe it as moving into the ‘slow lane’. Very apt, but the problem is that we tend to do that anyway as middle-age progresses. However, I’m now used to letting people pass me on the pavement and factor in twice as much time to go up stairs. I’m confined to goalie when playing football with my son, buy clothing without buttons or laces and my left hand is now semi-retired from all duties. Hey ho.
Welcome to our gang, I am sure you will find our forum helpful and friendly. I agree totally with you that diagnosis is a relief, it confirms that you are not going mad, with what appears to be lots of weird symptoms.
Take one day at a time, look forward to chatting with you again.
Gosh my path has followed a similar route - rheumatologists, gastroenterologists etc. I have a large lesion on cervical spinal cord with atrophy ( which had gone in June 2013 scan yet returned in October 2013 scan). In total I have had 4 MRI scans since 2011 and one also in 2008 (which was clear). My main issue is dodgy spastic right leg with quads so spastic my knee wont bend.
I have no diagnosis yet, PPMS I think is a possibility. Although neurologists thinks it might be something to do with radiation treatment that I had in 1990 for cancer.
Have seen many doctors and the only thing that they seem to aggree on is that I am a very unusual case!
Thanks to all of you for your welcoming posts. I’ve actually had a good day as I’ve heard I will soon receive my blue badge and OT are organising for assessments for grab rails, shower chair etc. It certainly brings it home when I get excited about being able to manage safely in my own home ! Yes I get moments when the whole situation seems swamping but I see that as kind of normal and healthy. Thanks again folks. It feels good to know you’re here. Judith x
hi Judith welcome. I’ve recently been diagnosed. and I’m 50. I find the forum extremely helpful and everyone is so helpful u feel u not alone. I’m just getting use to the diagnosis. I have to reduce my hours soon as I m a staff nurse working on an acute surgical ward. the fatigue. takes over and I have unsteady gait. I so hope u find the forum helpful now and in the near future best of luck so sorry to hear u one of us but just take each day at a time xxxxx
You’ve joined some very helpful people here who I’m sure will make you feel more than welcome. I use them as a sounding board and to vent my frustration to them and they help me be a little less grumpy!
Hi Judith and welcome. I was diagnosed in June and can relate to how you feel, but please don’t get despondent when you hit a bit of a low, it comes and goes for me. I’m 44, was also a nurse and had to retire as I wasn’t able to manage but have discovered so many new hobbies to suit my day to day dis/abilities. Life has changed in so many ways but although different to how I imagined, it’s good. Just keep in mind that you’re still you.
You’re very lucky to have a supportive family and friends, mine mean the world to me too and have helped so much, even if they don’t understand how frustrated I feel at times.
I’m glad you plucked up the courage to post on this site, the support I’ve received has been wonderful. It takes courage but the people become a new network of friends. Having ms yourself is so different from what you’ve learnt or experienced, well it definitely is for me.
Anyway take care and I hope you get the grab rails soon. I got an aid to get me out of bed, a perching stool and a bath chair and they’ve been an absolute godsend. What a difference they’ve made, definitely worth getting excited about. Please keep in touch, a new member is always made welcome.
