Hi everyone, Been on here for a year and lived my limbo land time relatively calmly, mainly thanks to Karen, Tree, Rubina, Anitra et al. Well I got my big news today…RRMS! Didn’t cry with my lovely neuro, who seems to be one in a million, and he congratulated me as its the fiirst consultation I’ve had that I haven’t, he even had the tissues ready! He is not putting me on DMDs at first because of a problem with the anti bodies blood test results. I don’t know what that means, but he said he wants to do them again. I met my MS nurse, Fiona, and she seems nice. They want me to go on a new to MS course, there is 1this Friday but it’s fully booked so I have to wait until the Autumn. The hardest part of the day was breaking the news to my poor dad whose own mother had a very aggressive form of MS and it ruined his childhood. I am joking Grazo’s gang because I love my wine and I love his attitude! Hope you didn’t have a hangover this morning Sir! I can’t thank Karen enough, I don’t know if you’ll ever truly know what an inspiration you have been to me. I’m a fighter and now I know my enemy I intend to fight as hard as I can, Many thanks, Chis x
Grazo’s, with your permission, that should say, I am joining your gang!,
Well Chis, it’s good to put a name to it isn’t it? It gives you conflicting emotions - relief and grief. As you say though, you now know your enemy! I’m sorry that this news was upsetting for your Dad and therefore for you as you delivered the news but as you have probably worked out already MS is different for each person. Keep your chin up and take it a day at a time - all cliches I know, but true. Thinking of you, Teresa xx
Welcome to the gang Chris… Sorry that you have to join but hey- the more the merrier! Actually that doesn’t sound right
I know exactly how you feel and my heart goes out to your poor dad but I have no doubt you will give each other strength.
Enjoy a nicewe glass of vino tonight and try to relax… I actually had a nice relaxed meal and fought the temptation to get thoroughly drunk but did have a couple of glasses.
It does feel good to, as you say, know the name of your enemy.
I’m really glad to have helped a bit Chis, and I’m really sorry that the neuro didn’t give you an answer that is fixable
Antibodies normally develop in response to being on a DMD - haven’t heard of them being there already, but it seems like you’ve got a good 'un there, so I’m sure he knows what he’s doing. Don’t let him forget to retest you though!
(On her way through to the kitchen for a refill!)
Hi there, I’m new on here just a few days. I’m glad you for your news, can’t imagine how hard it must have been in limbo for a year. At least now you can look towards tackling the future and it sounds like you’ve had some good support on here, I found it touching just how kind people are. Good luck with things to come. Adam
Hi Chis, you have taken over Grazo as the newest officially diagnosed member then! This is a gang I hope not to join but highly suspect I might one day soon.
Is your story on here - I’m sure it is but can’t find it, would love to read it. How you feeling about it all today? Hugs
Hi everyone, G… Glad you had a good night, Teresa, strangely I feel a bit better and for the first time in a while had a great nights sleep. Karen…keep up the great work, you have such a huge presence on here and I have always admired your honesty. Adam, I’m not going to tell you not to worry because I know that is only natural, I am lucky, I have a fabulous gp and my neuro is an amazingly kind and patient man called Dr Wilson at the Walton Centre in Liverpool. I don’t know where you are or what stage of the process you are at but there are people out there who will eventually get to bottom of this for you. I have found this site an amazing support as the sight of the wheelchairs at the local ms group frightened me, but being on here and taking advise has really helped. I can walk, talk use my arms and my husband finds my lack of word finding skills another thing to love about me! If you need to ask about anything and I mean anything people on here are kind. I would suggest you resist the temptation to google everything on earth about ms…there are too many crackpots out there. I wish you all the best and please use us when needed. Deb my story is on here my first post was probably around August of last year when I was diagnosed with ADEM. It’s not very different to anyone else’s really, but maybe another day as I don’t want to look back Today, onwards and upwards for me now, but I’ll still be here in the hope I can help someone even half as much as others have helped me. Have a great weekend everyone, Chis x
…Onwards & upwards is a fantastic way of thinking and you are indeed a fighter. We’re all in the same or a similar boat so it’s really nice when we hear that we’ve helped in some way.
It sounds like you have a good and supportive neuro team and you have us lot too
You know where we are…in the meantime take one baby step at a time - there’s no rush.
p.s. sorry I’ve not replied earlier, I’ve not been feeling too chipper
Hi Chis Glad you’re feeling a bit better. When you carry round the worry of waiting for a dx, it can really weigh you down. Once it occurs, it can give such relief that you feel more content and can sleep again. Hope you’re enjoying this wonderful sunshine! Take care, Teresa xx
Thanks guys, Rubina, I hope you’re not suffering too much, hope things improve for you soon x
You coping ok, post diagnosis, Chis? xx
Hi Deb, I’m ok, there are a few practical issues I’m trying to tackle today, DVLA, ms nurse told me to contact my car insurers too, I hadn’t thought of that. My GP fitted me in as an extra appointment really early this morning so that we could tell him about how we got on. He was great as usual and has been a wonderful support. I am just going to try to rebuild my life as its been so stressful being in Limbo. Thanks for asking, Chis
I’ve just phoned my car insurers and they told me to phone back once I had notified the DVLA and had their response. Don’t want you hanging on the phone for ages only to be told call back another day.
Thanks G, just about to do that now, bit of a pain isn’t it!
Note to all - the car insurance company cannot put your premium up - it’s illegal. So if they try it on, don’t let them get away with it!
Really!! I didn’t know that.
Thanks Karen! Phoned DVLA they are sending out a questionaire, should I phone insurance before I get that? Didn’t know it was a minefield also, we have life cover, not critical illness, do I need to inform that insurance company too? Feeling a bit knackered by it now, busy weekend and early start, might put it away for another day. You ok today G? Chis x
The DVLA say to continue driving on your existing licence while they make a decision and sort out the paperwork, so it’s probably only when you get your new licence that you need to inform the insurance company? It wouldn’t hurt to call them and let them know what’s going on though I would think - you know what insurance companies are like - any excuse not to pay out!
As far as other things go, the only one I can think of that would be affected is travel insurance. If you’re planning on going away, you need to inform them about your MS. They will quote you to include MS. You can then choose to pay the extra or opt out of cover for it. (Shop about if the price goes up a lot - it can vary a lot.)
I’m pretty good Chris,
Amazing what I nice bit of sunshine can do for the spirit. Going to take a WEE walk later with my camera I think and see
what there is to see around the local loch. Feet are sore though but intend to battle through that
How are you coping? I was told to just leave the car insurance (By my Provider) until DVLA got back in touch about your
license. Just take things one step at a time I reckon and eventually we’ll get there… (Wherever that is)!!!
Not sure what to do about life cover either. We don’t have critical illness because obviously at the time I was still invincable
HAHAHA. Oh how quickly things change.
TAke it easy.