Forum

Has anyone else had these tests?

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.

Reemz

X

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 :confused: 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 :slight_smile:

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.

Reemz

X

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