Hi all - I have just this minute registered and have been having a brief look through the posts that seem to hit a nerve for me, and the support and replies actually made me cry! It seems that I am not the only one feeling this way and I wanted to reply to some of the posts to get some of my own support, but I didnt want to take it away from anyone who was asking for support…so I thought I would post my own and then those that felt they could help might want to reply :-). I was diagnosed wth MS 2 weeks ago yesterday and I can’t stop crying! Well, I have had a successful 24 hours where I didn’t cry and I tried to see friends who I had been avoiding and eat the many strawberries in the fridge rather than the Twix’s, but now I am struggling again. I am sooooooooooooooooooooooooooooo lucky with my support network, to the point where I feel a bit of a fraud to ask for comfort and replies on here when I have friends and family constantly asking how I am coping and the fact that I am not in limbo as in I have a dignosis, but I dont know how I am supposed to feel? I had an MRI scan yesterday and freaked out, having to be put in and out of it 3 times and with the comfort of the Stone Roses in the headphones to get through it! I havent heard from the MS nurses, im taking drugs I dont really want to or know why and am rattling like a tube of Smarties, my ‘follow’ up appointment is not until October 25th and to top it off I’m having an ‘episode’ which is getting better physically (although not as quick as I would like) but emotionally I feel screwed and out of control! Can someone also confirm with me that when they were diagnosed or having an episode they comfort ate enough to feed a small army and then cried!!! Also, did you question if you want to be in a relationship anymore or if you even want to be alive?! I can’ stop worrying or crying and feel numb
I think it’s normal to have mixed emotions when diagnosed. I was officially diagnosed with ms about 3 weeks ago and double whammy got diagnosed with lupus the day before. I knew the diagnosis was coming from last year as that was my first ever episode and ms was mentioned to me then so I did all the research on it previously so that I knew the process of what would happen in terms of an ms nurse and DMD’s etc.- but even though I knew all this hearing the diagnosis is still hard. I have a good support of friends and family too but I don’t think any of them can understand as its not them going through it all where as people on here have or are going through the same thing. I try and eat healthily as much as possible but there are days when I just want to comfort eat - I think it was like that before getting ill! There are lots of people on here who have had similar feelings to you. I at times wonder if I will end up single for ever as who would want to take all this on - but then I think about how things can happen to anyone at any time and life is unpredictable. I think it would be worthwhile for you to speak to someone on the ms helpline as it sounds like you are having a rough time and struggling and they are there to help and talk things through. Please do call them or speak to the ms nurse about possible counselling - it could help deal with things and help being able to talk to people who are aware more of ms
I just wanted to say hi and welcome. I’m afraid i cannot offer help on how you’re feeling as I’m still waiting for a dx myself. There are many on here that will be able to advise you though and the support here is fantastic. From what I can work out though, people go through a huge range of emotions so you won’t be alone in what you are feeling. Good luck and hope you soo feel a bit brighter
Hi Karina - thank you so much for taking the time to reply to me and share your experience. You sound remarkably strong seeing as your diagnosis was around the same time as me, give or take a week? I have already found this forum, website and the helpline my source of support and from stopping me COMPLETELY losing the plot. I phoned the MS helpline a couple of days ago and spoke to a man for an hour who was soooooooo lovely that it made me have 2 days where I agreed to see friends, not cry and try and be a bit more positive but now I am afraid I am back to pj and cream cake land and crying for most of the day! I did call them again today but the lady I spoke to seemed like it was harder for her to know what to say to me and the conversation felt more strained so I didnt talk for long, which is a shame. I have asked my Dr to call me to discuss counselling etc, but it seems like I am asking for the world to get an appointment with them at the mo which adds to the frustration,but ill keep trying Thanks for listening, as I am sure you have your own upsets and struggles going on at the moment - but I am happy to be a sounding board to you too if it helps? Thanks again
Thank you Sharon - its a comfort in itself to be able to post how I am feeling and get replies…it almost feels exciting to get a reply that confirms I am not alone. I hope you are ok too x
I’m kind of coping with it all ok - it was expected as it was provisionally diagnosed last year- Although my ms and lupus came out of the blue with no previous history just a big one off attack. My family and friends think I’m coping with it all really well and I guess I just take one day at a time. It might feel different when I start my DMD’s but I think at least I’m taking a proactive approach to it all and trying to get on top of it all and take control rather than the ms taking control of me if that makes sense. I’m just coming out of a relapse so still having some symptoms and this relapse has taken a while and when I was in full relapse I did think all sorts of thoughts but I just remember that there’s other people worse off than me. Easy to say I know but I just think of the positives in life rather than focusing on the negatives. But having said that its completely normal to have bad days and good days emotionally - its grief in a way - grieving for the life that you thought you’d have if that makes sense. But the thing to remember is that even though life will change with ms it’s far but over!! I take the opinion that I have ms - ms does not have me!!
Hi hun, now firstly, please stop beating yourself up for feeling the way you do…okay?
Being newly diagnosed hits most folk like a wrecking ball on a demolition site!
2 weeks is sooo recent and it can take much longer for the news to be absorbed, even if you`ve had symptoms/problems for a long time… hearing something you never wanted to hear is the pits!
Give yourself more time…much more time.
It is great to hear you have such a good network of support. But talking to folk here, who know exactly how you feel, will help too.
it can take a while for an MS nurse to contact you, but why not ring them, if you can?
Do take the meds, but you do need to ask what they are for, so you can understand your need for them.
Be good to yourself and eat the junk if you want it!
I’m not diagnosed, yet, but my GP told me it was very likely I have MS 5 days before I had to defend my PhD. I honestly think the only way my body could cope with all the stress was by crying. Then I started reading up on the MS diet and became afraid of eating anything at all, which then led into extreme stress eating. Only after I had the defense out of the way, I realised that I’m still in limbo and not definitely diagnosed. So even though I wasn’t diagnosed I thought I was and had the same response (plus my brain started to make up MS symptoms I never had before, like pins & needles).
I know I’m still in limbo and should try to stay positive, but every once in a while I look at how my life has already changed and it hits me that this may be my life now. I find that thought incredibly scary… so believe me, I think doing nothing but cry and eat for 2 weeks seems like a completely reasonable response. I think most of us are not really used to so much self-pity, so it seams kind of wrong, but I think you need to grieve and mourn your health. You just lost something really important. I’m sure you’ll find a way to get to terms with this soon enough! Again I’m in limbo, so really not qualified to really say anything, but I think your reaction is normal. I’d view the tears as all that stress you’ve been living with flowing out of your body and soon enough you’ll have enough strength to fight this thing!
Btw: I feel like I’ve talked a lot about myself in what is supposed to be your support thread, but I really hope I could provide some support.
Hi, I was Dx 3 weeks ago, bit of a shock as dr thought I had Ménière’s disease & only sent me for an MRI to rule out a brain Tumour! Not a complete shock as I had Optic Neuritis 12 yrs ago followed by a host of other things, but they were all put down to different illnesses. I totally understand how you are feeling. I have wonderful family & friends, most who are really supportive but a few irritate me by saying things like “aw, you’ll be fine”. When I was Dx I phoned my mum as was on my own with my baby & she said to me “where have you got that from?” To which I replied " I don’t think I picked it up shopping in Asda!" She then said “I hope it"s not hereditary” - not very tactful my mother. I too have been comfort eating since I found out, can’t stop at the moment but will sort that out when I feel a bit better about it. It’S a huge thing to take in & I’m having a bad relapse at the moment, I have to keep telling myself that it’s temporary & will pass. This forum is great, it’s good to be able to speak to people who really understand. Keep talking, I find that although it’s difficult at times it really is a great tonic. Kate x
vintage red ,Hubby was diagnosed with multiple sclerosis on july 16th 2013, and re registered severly sight impaired/blind 8th august 2013.We have have been together 20yrs married 13yr and have 2 little daughters.Please dont give up life is a fight start to finsh.You will have good days and bad i dont know if you have a partner or married or single.But even with ms life doesnt have to stop.Hubby was like you i made him pull himself together he was upset he cannot help his daughters with things he could have before his vision went.He has a tiny bit of vision and worrys this is going to, he is on waiting list for a guide dog.We still do things together as a family its harder but we still have fun despite everything.Keep your chin up and keep fighting it xxx julie
wow - you are ALL amazeballs! Thank you sooooo much for taking the time to reply to me and with such lovely and comforting comments. I havent been on here for a few days and managed to have about 5 positive days, but feeling a bit tearful and fed up again tonight. I will reply individually but just wanted to say thanks xxxxx
It’s great that you’ve managed to have 5 positive days - that’s 3 more than before so remember bit by bit it gets easier. Any time you need a sounding board we are all here to help and to listen. Hugs x
thanks lovely I hope youre doing ok? xx
How are you all so chirpy. Im sitting here plotting how i can puncture my neuros tyres…why oh why have i got this condition when i hate hospitals and hate doctors.
Hi vintage red. Im in limbo so no idea how you’re feeling but just wanted to send you a big hug and let you know you’re not alone everyone here wilp support you A Ps. Eat the twix
ah arwen that was a lovely reply and the twix comment made me lol thank you!!! I hope you are finding some support on here or elsewhere?! I think the shock of diagnosis and the unpredictability of the illness makes it an up and down time, but the more I read up on it the more I realise that everyone’s episodes are different and therefore their dealing with it and approach. I sure as hell cant wait to get out of the twix phase though lol! x
Nazra - please dont comment on my personal posts. From what I have read of your comments I dont find you helpful or see why you even come to a forum like this. Good luck with your diagnosis and posts. Thanks
Im doing ok thanks Vintage_red - started my rebif yesterday and didn’t have the greatest reaction but hoping it will soon settle down as my body gets used to the treatment. Stay positive and when negative come here and have a moan x
Nice to hear from you Karina! Whats rebif? Sorry, bit new to the lingo? Are you off work atm? How you coping with it all, you seem quite ‘chipper’ to me considering? Sorry I know I shouldnt bite but I find it mad when I read three pages of her taking everyone out on this forum then posts stuff for support - hate people like that, they should be blocked!!! xx
Nazra nobody is interested in anything you say anymore so do us a favour and but out