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Try again to see if it will post

Hey, Tried a couple of times to post yesterday but wouldn’t work. Try again: Hi all, I know they can vary from weeks/moths even years but it’s still new to me and so learning. Brief overview: - dx in dec 2013 after a year of sporadic systems inc sensory problems and optic neuritis. - started Copaxone at the start of March this year. - relapse started in March also with optic neuritis/nerve pain and fatigue. - was off work and went back for 5 days before falling ill (end of April) - had a really bad time (Labyrinthitis symptoms) and my balance vision is still not great. This has been going on for nearly 7 weeks now. I’m still off work, not able to drive, having to get a walking stick as can’t walk without someone’s support and just anxious. I’m 32 with a good job I’ve worked hard at. Work are being great but I’m scared my balance won’t return now. I struggle with screens/lights as have random double vision (apologies as this is physically hard to type so there are probably lots of typos, grammar inaccuracies) For the first time since my dx, my independence is being lost. I.m really worried about having to face up to changes I may need to make etc. I’m going to ring my MS Nuurse on Monday. Had no contact since just after I was really ill. I kinda hoped I’d be well on the mend by now but I’m just not. I’m not asking for answers, just needed to get it out of my head. I’m thinking about MS a lot now which I didn’t before. Hope everyone is good/well though :slight_smile: L xx

I’ve just ordered a walking stick so hoping that will help with balance?

You poor thing - hope you feel a lot better soon. You could ask for steroids - I would have high dose oral ones if I were you. You feel grim while on them but may find that you feel a lot better soon after and may be able to get back to work quickly. Your GP may be able to prescribe but I’m not sure about this.

Do you see a neurologist? You might be able to go onto a more effective drug than Copaxone. I beat the drum for Tysabri but you might be able to get Gilenya or Alemtuzamab - worth talking to a neurologist and looking into all of these.

Thanks for replying. I feel like I’m bumbling along and don’t know what to expect. I think (but could be very wrong) that it seems quite active. Two seperate counts of ON and this new balance/double vision/sickness thing since November. I’m going to ring the nurse tomoz and be quite pushy. I just keep getting told to get signed off work and rest, not been offered steroids etc. Work can only pay full time for 6 months and I’ve been off pretty much since the start of a March. Worry of that doesn’t help xx

Thanks for replying. I feel like I’m bumbling along and don’t know what to expect. I think (but could be very wrong) that it seems quite active. Two seperate counts of ON and this new balance/double vision/sickness thing since November. I’m going to ring the nurse tomoz and be quite pushy. I just keep getting told to get signed off work and rest, not been offered steroids etc. Work can only pay full time for 6 months and I’ve been off pretty much since the start of a March. Worry of that doesn’t help xx

Hi L

As suggested steroids have shortened my relapses considerably (when I used to have them) SPMS now.
I believe your MS nurse should be able to prescribe them for you.
The only down side for me was the “Moon face”, I used to look like Billy Bunter for a few weeks!
Another up-side used to be a few weeks after that when people would say WOW youv’e lost so much weight!
Which I really hadn’t.

Hope your’e feelind better soon!

Steve.

Thanks Steve. Waiting for a call back from nurse hopefully. I’ve got a HR meeting on Wed so would like a better idea of the plan etc I know it shouldn’t but the Billy Bunter thing made me laugh! :slight_smile: L xx

Hi Star, From my own personal experience of HR meetings as a result of sickness, given your dx, if you are in a union, please take a union rep with you. My HR dept and line manager kept coming up with all different stuff that should not have been discussed etc, but I didn’t realize this until the union rep got involved. I didn’t ask for a rep initially, as I didn’t think I was going to be off sick for so long, but eventually I had no choice, and the end result was ill health retirement. So please, utilize a union rep if you have one. Failing that, join one today if you can and take one with you. Good luck!

Star, I was sick for nine months a few years ago, also had full pay for six months when that ended I went down to half pay. As soon as my six months ended I got a letter from my H.R advising me to go the job centre and sign on sick with them which I did. I don’t remember how much I received or any details ( can’t remember what I did yesterday) but that and my half pay seemed to good to be true. I don’t know if things have changed since then but worth looking into. Good luck Jan

Thanks both. I think it’s more of a welfare check/tick box thing at this stage. I has one when I was dx in dec and then when I went back to work (for all of 6 days!!) in April. It’s like Groundhog Day :slight_smile: I am really luck with my manager and hr officer, they are very understanding at the moment. Spoke to my manager today as meeting is scheduled for Wednesday and I’m seeing my ms nurse on Thursday. She wants to try and sort it out now…maybe steroids!? Xx