Hi, Feel like I need run up a mountain a scream! Although no chance of running at the moment & i wouldn’t be as to see the way either! It’s been a crazy few weeks. Waited 8 months to see MS specialist consultant and thank goodness I saw him only two weeks ago. Started to get more symptoms in my right arm and leg two weeks before seeing him so he booked MRI, evoked potential and full blood tests. Great I thought, someone is actually taking an interest and doing something and it’s not all in my head, well not my imagination! Saw my gp as things were getting worse with my arm & leg so she prescribed steroids. Only managed a day on them. Became very flushed, had palpitations, paranoia, extreme anxiety and severe leg cramps. Just got them out of my system and arm seemed to stabilise when my right eye decided to join in the fun. So Friday I spent the evening in an emergency eye clinic having developed eye pain and fuzzy vision. No abnormalities seen so sent home. Just my imagination I thought, I do need help! Well that was Friday. I saw my gp as the pain and vision had got worse. She said to me that this is definatly optic neuritis and that she would speak to my consultant to see what he wants to do. My GP has Been amazing the whole way through this last 14 month since the Transverse Mylitis. We both thought back then that this was MS but the stick to the obvious & text book neurologist I saw was adamant my diagnosis was TM and was pretty certain it would stay that way. We spoke yesterday about the meaning of this being optic neuritis, and that is was a clear second episode. I somehow walked out of the surgery thinking well I do need to hear it from my consultant, it may be something else. Waiting to hear back from my GP all I could think about was the next few weeks, an MRI booked for 3 weeks time followed by an appointment with the consultant to tell me the diagnosis. Time to get my head round things… Then the phone goes its the local neurological hospital asking if I can make an appointment on Friday to discuss treatment & sign papers. Of course I said yes without even thinking and put the phone down. Ok, I guess that’s a definate yes this is MS. No call from dr just a friendly secretary booking my appointment, it sinks in a bit more. But somehow I need to be sitting with my consultant & him actually saying to me you have ms before I really really get it. I know it is, I’m going to discuss treatment on Friday, my GP said it is, so why do I feel I need to hear it officially before it sinks in?! Beginning to think limbo land isn’t that bad after all!
Oh Becca I’m so sorry!
I think there is a little part in us all that although we kinda know…from our own body symptoms and then the clues from numbskulls who kind of skip the phase the niceties of being told your diagnosis…I don’t think it would sink in with me either until I saw the neuro.
I think it seems we ( I had a nasty bout of TM in March) all get told not to look over our shoulder after a bout of TM, and yet I am seeing so many of us having further episodes… which then become MS.
However as Karen (Rizzo) and the old timers will say…it really isnt the end of the world, life goes on and can be good…it’s also good that your neuro isn’t waiting for that MRI in 3 weeks to start treatment.
Keep in touch, and big ((((((((((((((((hugs))))))))))))))))
Gillian
Sorry to hear that you’re relapsing 
I have no idea what papers you have to sign, but it does sound like you have one hell of a GP, getting you such a quick appointment! Given the fact that they mentioned treatment, it might be worth having a look at the msdecisions website before you go. It might be too early and I’ve misunderstood, but if not, it can speed things up if you know what you want already. I hope the relapse is a short one! Karen x
So sorry to hear about your relapse. Hope it’s short and you get some answers on Friday. Xxx
Hi,
Thanks so much for your comments,
I feel very lucky to have such a great GP and now a fab Neuro Consultant, the awful thing is that it shouldn’t be just luck.
I am a fighter and don’t give in easily, and this won’t be any different. It’s just this initial bit i’m dreading, more appointments, more scans and the evoked potentials also starting the treatment. Have had a brief look at the ms descisions site but will have another good read. Think I know what I’d go for but don’t much like the sound of any of them! What is a VEP like?
I have no idea what paper work she was talking about either, could have misheard as i took the call with my girls rushing around me as we walked in the door from school, was a bit stunned by it all too!
will keep you posted.
xxx
VEPs are really boring, lol! You have some electrodes stuck to your scalp (bit messy, so don’t waste time on your hair that morning!) and have to sit and look at a screen showing very boring black and white patterns.
Nothing to worry about 
As far as DMDs go, I don’t think any of us really want to be on them, but they’re all’s that’s available that are proven to be able to give our MS a kick in the teeth, so it’s worth the hassle. They reduce relapse rates, delay the onset of disability, reduce disability, slow progression and even extend life expectancy - and all that for the bargain price of injection site reactions (some redness and bruising, etc) and potential side effects that include flu-like symptoms for some people. [I’m talking about the injectable DMDs here.]
Don’t worry about it too much right now - see what they say on Friday first?
Kx
Thank you Karen Put like that it sounds worth any side effect. Thanks for info on VEP, will make sure I don’t have my hair done that week! Really really appreciate your comments, hope you are doing ok Xxx
Hi Beccabi
Sorry to hear about your relapse. Really hope you feel better soon.
Reemz
X
when you go for your VEP, take someone with you - i didn’t and ended up walking round looking a right mess with my hair everywhere from where the electrodes had been stuck - doesn’t sound too bad until you have to get the bus home!! As for the injectable DMD’s you soon get used to them and they just become part of the daily routine. I just make sure that when i am planning on going out or swimming (normally with friends 7 year old twins who ask about everything!) that i inject in areas that won’t be on show so that i don’t need to explain any redness/bruising. hope you feel better soon and get some answers. take care.
Mel.
when you go for your VEP, take someone with you - i didn’t and ended up walking round looking a right mess with my hair everywhere from where the electrodes had been stuck - doesn’t sound too bad until you have to get the bus home!! As for the injectable DMD’s you soon get used to them and they just become part of the daily routine. I just make sure that when i am planning on going out or swimming (normally with friends 7 year old twins who ask about everything!) that i inject in areas that won’t be on show so that i don’t need to explain any redness/bruising. hope you feel better soon and get some answers. take care.
Mel.
Thinking about you today Beccabi, hope that it’s a good appointment,
Gillian
Hi all, Thanks for all advice, will definately take someone with me for VEP in fear of the walking scarecrow look. Saw my consultant yesterday who confirmed everything “yes this is MS” Hmmm… Was 99% sure he was going to say it, felt fine about it, but feel numb & don’t want to talk to anyone. Quite frustrated I’m feeling like this, want to snap out of it! Think maybe I would feel better about it all if I didn’t have the optic neuritis at the moment. It’s a very clear & constant reminder of what’s going on and i can’t just ignore it at the mo. Appointment was good, he reassured me about my eye, which I don’t think has got any worse for a couple of days. We talked about DMD’s a bit. Need to have my MRI & VEP, both booked for just over 2 weeks time. He is doing referral to ms nurse, so should hear from her soon to talk things through and discuss meds etc. need to wait for this optic neuritis to settle before I can start anything though. So here we go! Another journey, new experiences, new learning, not what I’d planned but interesting all the same. A big positive in all this will be all the new people I get to meet and communicate with. Thank you all for being there, having people about who REALLY understand is just great. Xxx
Sorry there wasn’t a different answer for you yesterday. It sounds like you’re in good hands and that will really help. There’s no emotion that’s not normal after this kind of news, so give yourself a break and just take it one day at a time. Karen x
Hi there, Those words hit hard, don’t they? Even when you are expecting them. Your response is totally normal and to be expected. I was dx’d in Dec last year and felt the same way. I hope you have lots of excellent support at home. Take things easy and allow yourself lots of time to get used to the idea. I’m still getting used to it after nearly 10 months. Take things very slowly and let people look after you. If you want to rant and rave, come on here, we’re used to it. Just wanted to let you know that lots of us understand how you feel and are thinking of you. Teresa xx
Oh Becca I’m so sorry.
Brilliant advice from Karen and Theresa as ever, particularly the aprt about coming on for a rant…it’s easier to do somehow on here amongst lots of people who really do understand.
Take care and as the girls say be kind to yourself and take it slow
Gillian xx
I’m so sorry. Hopefully nowyou can get help so you can feel better. Take care of yourself Xxx
Hi I’m so sorry that you’ve joined the club but there are much worse clubs to be a member of. You’ve already received excellent advice but do you know that you must now inform the Dvla and your insurance company of your dx. Also if you have critical illness insurance cover you need to claim as ms is a claimable illness. Some companies have a time limit on diagnosis to claim so it’s quite important to check. I really hope your relapse is a short one, Chis
Hi I’m so sorry that you’ve joined the club but there are much worse clubs to be a member of. You’ve already received excellent advice but do you know that you must now inform the Dvla and your insurance company of your dx. Also if you have critical illness insurance cover you need to claim as ms is a claimable illness. Some companies have a time limit on diagnosis to claim so it’s quite important to check. I really hope your relapse is a short one, Chis
Thank you all for your lovely & helpful comments. It is great to be able to share with people who understand. Am doing fine Xxx