Thanks Pat. Had neurophysio lady here yesterday so asked her if I could get a report from OT with details of my balance and walking issues (fingers crossed).
It’s awful isn’t it Pam? I keep feeling the need to justify to myself that I just can’t do much these days as opposed to being lazy/unmotivated.
Well, finally got the letter yesterday (spinal MRI results), for what it was worth…
No lesions on spine, wear and tear not affecting spinal cord (didn’t say where). Three sentences in all including one about slightly high blood sugar. Looks like I’ll be calling again this week to ask for radiologists report and results of LP…
I can’t quite believe the 'mild MS ’ label. There is clearly nothing mild about it. I wish neuro’s would stop using it as it is not a proper dx. Hope you get the reports you need to help you Mags! It’s horrible that thing that you’re being ‘lazy’ when you have to rest loads. We all know deep down that we have no choice but to rest - laziness doesn’t come into it! Keep well all, Teresa xx
Good luck on Monday Mags. Glad you’ve had the appointment brought forward. The same thing happened to me and I was dx’d three months earlier than I expected. I was so glad to get the waiting over! Let us know how it goes! Teresa xx
Thank you so much Teresa and Moyna. I know it shouldn’t make a difference after all this time (10 years now) but as you know, there’s a big difference between thinking it and having it in writing.
I feel fine (mentally) at the mo, just hoping my brain feels fine too! I shall let you know…
Hi Mags, did you see my post on sjogrens. It can be really confused with ppMS and so can lupus. If your lumbar puncture is negative then I would strongly suggest that you ask for these tests. I am going to ask for these next time I go. sjogrens when it affects the central nervous system can be treated quite well. It also causes glands to swell which I think I remember you saying once.
Hi Moyna, I did see it and I had a quick Gurgle but I don’t think it’s me. Thank you for the info though hun. I was tested for Lupus last year I think. Will just have to wait and see I guess…
Hi Mags, I was on the Barts MS blog the other day. The Prof G believes that MSers with a negative LP are not true MSers. Go on and read it yourself - type in ‘negative OCB’ bands. I would ask them to check for sjogrens if the LP turns out negative. You have nothing to loose.
Oh dear! What a bizarre day, my head is in a spin…
Well, LP was positive, so no surprises there but wasn’t really prepared for what happened. I think he had a ‘cunning plan’ before I went in…
I told him about newer symptoms (pain behind right eye, buzzing in right foot and stabbing pains under ribs on right side - all usually on my left). We discussed the fact that the one time I had steroids they made me really ill and in fact it was the week that I started them that I first had problems with my right side.
Then he asked me if I would consider taking DMDs, which really surprised me as he told me last year that I didn’t qualify due to lack of relapses (or remissions).
He told me that technically, he ‘could’ consider new symptoms to be a form or relapse and if that was the case and I told him that I could walk 100m, then he could refer me for DMDs.
I told him that on a good day, I could walk 100m although I would suffer for it later.
He then said that if that was the case, then he would put me down as RR and send the referral for me. I asked him whether he thought it was PP and he said ‘we don’t really know yet but I’m putting you down as RR and referring you’.
I just feel so lucky that he is prepared to do this for me. I’m pretty sure that I have progressive and I think he is too but at least I have a chance now to hopfully slow things down a bit. Fingers crossed eh, would be daft not to give it a try! I love my neuro!
So if it’s ok with you guys, I shall hang around on this board? Thank you all so much for being so supportive. I’m not going to go all gushy on you but you know how I feel.
Firstly, well I don’t know about you, but I was quite relieved when I got a positive LP. I now knew what was causing all the problems. Followed of course by disbelief. It couldn’t be true… could it!? That was nearly 5 years ago so I think I’ve got my head round it now (although on the occasional good day I still think there’s been a mix-up!).
Yes, it’s great that he’s prepared to try DMD’s. Who knows??? Possibly RR or that new ‘type’… progressive relapsing? Anyway hon if the DMD’s do work… fan-bloody-tastic… and if they don’t well at least you will then know it’s definitely PP.
As for staying on the board… don’t you dare leave us!!! You know once a member of this gang we never let you go. Sorry hon but it’s a lifetime commitment!
Just because you expected it, don’t think that you’ll miss the emotional rollercoaster. It will still happen. We are all here to help hon… and if by chance you don’t get the rollercoaster ride don’t for heaven’s sake feel guilty. ALL emotions or lack of are acceptable so go with the flow.
Oh Pat, thank you so much! He’s picked one out that hopefully won’t affect my fatigue too much (thank goodness, I’d be permanently comatose! ) so I’m keeping everything crossed on the basis that brains are unique and it could be a miracle cure (I know, but DeNile is a positive thing from my point of view!). Having said that, had a good meeting with occy health last week. Didn’t realise how much I’d hoped the neuro-physio would sort me out and help me ‘get better’ but as she said ‘your body just can’t produce the energy you need any more so you’re going to have to learn to do less than you want to’. I used to see it as a challenge but I think I’m finally starting to accept that this is me now and I’m not just being lazy. It’s only taken me ten years (slow learner, me)!
If I’m stuck with you lot for the duration, that’s not such a bad thing.
Hi Mags, I am glad that you finally have an answer. Great too that you can try the dmds as I am sure they can never be positive which ms anyone actually has. Which one is he putting you on?