Hello, I received a copy of my Neuro’s letter to GP confirming his diagnosis etc. On the management plan bit, he is asking for some extra tests, they sound quite interesting and I just wondered if anyone else has had or heard of them: Aquaporin levels Check ENAs and long stranded DNAs This will be done at the same time as LP. I have my first MS Nurse appointment next week. When I came off the phone to her I broke down and when I received this letter I cried. I’m fine one minute then crying the next. Thanks Sam xx
Hi Sam I was diagnosed 5 months ago and I can honestly say that this is the first whole week since, that I haven’t had a cry about something !! Xx
Aquaporin levels I think to my knowledge is to rule out something called NMO. Don’t google as it will just make you panic - my neuro sent me as a matter of ruling it out but it is a very rare condition. It sounds like your neuro maybe doing the same thing too so it’s a good thing he’s being thorough. Back in the day a few MSers were wrongly diagnosed when they had NMO (it’s a relatively newish concept NMO) which is why a lot of up to date neuro’s will do the test. Don’t know where you are but I think results take around 6 weeks (max) to come as they’re sent to oxford.
ENA I think is for some auto-immune conditions (but don’t quote me on it).
It’s a difficult time at the moment - your an emotional rollercoaster - you will get through this though. Take 1 day at a time. Good luck with the MS nurse.
Thank you both. This will make you laugh, I posted that then the door went, it was my MS Nurse!! I thought it was for next Thursday but it was today! My first major brain fog moment! She saw the funny side, I couldnt stop apologising She was nice and down to earth, straight talking. I felt really disorganised and I bet I think of a load of questions now she’s gone. My son is off sick from school today as well, I need a coffee!! (And a little chocolate ;)) Big hugs Catherine xx every time I see MS and then my name it starts me off. I have narrowed the DMDs down to Avonex or Rebif. I cannot get over the lipoatrophy with Copaxone, so it is interferon for me. How are you Reemz? Is your other appointment coming up soon? Sam xx
Oh no - darn brain fog. I’m sure the MS nurse is use to these things happening though.
I’m already on my second cup of tea this morning (de-caff though) and had my morning breakfast biscuits for some sugar
Had recovered from pretty much all my symptoms by last octoberish but then from early Jan just not felt 100% and some of the old stuff has crept back with new things and fatigue which knocks me for 6 when it hits - I feel like I’m having to really make an effort to focus on what I’m doing. Hey ho I’m better than I was last year though and am able to work fulltime just abouts.
My neuro has gone on sabbatical so been referred to another MS specialist - he’s meant to be pretty good so relieved about that. Hopefully should get an appointment through for April sometime, though I suspect I’m going to be in limboland for a while until something major and conclusive happens.
Hope your son feels better -enjoy the choclotae and coffee. So glad you’ve managed to narrow down your DMD’s.
Hi Sam Chocolate is a must at times like this !! Re DMD’s, I was exactly the same with the copaxone but it was the thought of injecting into muscle that put me right off the avonex…hence narrowing it down to Rebif. I have to say though, I am so glad I did. I got the rebismart and it’s so easy. I cried and cried last week when I received a copy of my neuro’s report which details brain stem damage. I hadn’t heard him say that when I saw him but hubby says he did and I had just blanked out at that point !! Xx
Definitely a big dose of chocolate Sam! Glad you’ve seen the MS nurse and that she is nice. It’s hard coming to terms with your dx - I was dx’d about 15 months ago and although I think I have accepted it, I am feeling very angry about it atm. Why me etc! It’s not easy. Hang in there! Teresa xx