so i had my MRI on july 25th with more indepth pics of t area requested and done 4 days later, still awaiting results anxiously this week i decided to call consultants secretary who told me he had taken my MRI into the discussion meeting, and had dictated a long dictation which she would type up weds and let me know results by end of week, its now fri i am still waiting MAYBE i will know whats wrong with me finally by end of today
Poor you. That is a long time to wait. Really hope you hear today. I had my first mri today of head and cervical spine. It’s quite a weird experience isn’t it. Were you told anything straight after your scan? I was hoping maybe I’d be given an idea if not was normal or not. Hoping I don’t have to wait as long as you for results. Good luck. Let us know if you hear anything. X
i had to have a full head to tail scan, the first time i was told nothing, the second time i was asked by the radiologist if i had ms, when i questioned him further if he had seen something on the pics i was told i am not allowed to say so have been panicking every since, not heard anything yet so far today im still hopeful, i will let you know outcome when i get it, its been quicker to be awarded PIP than get mri results
Why not try phoning the neuros secretary again. If the letter was typed up on Wednesday, they are usually ‘unsigned to avoid delay’! Hmmm!
If it’s been typed but not yet sent, then you could ask when it’s being posted (any chance of an email?). If it’s not been typed up, why not?
It’s actually inexcusable to be waiting all this time. And the worst of it is, unless you are nice and polite and friendly to the admin staff / secretaries, you will get nowhere.
If you haven’t had the letter by Monday, I’d be tempted to get onto the hospitals PALS unit (stands for Patient Advice and Liaison Service).
I’m sure you’ve heard this before, but apparently the reason we are called ‘patients’ is because we have to be incredibly patient.
Hopefully you’ll get the letter very very soon.
Sue
letter just arrived they have found lesions on my spine at t5 on the right and c6 posteriorly but my brain is normal also i have a vitamin d level of 20 nmol/L what ever that means and i have to start on daily vit d injections also my aquapoin-4 antibodies and parietal cell antibodies are negtive and they want to review me from a coeliac perspective, next stop lumbar puncture, does this mean MS
Hi
I just looked up the vitamin D thing and found this site: I tested my vitamin D level. What do my results mean? | Vitamin D Council it looks to me that your level of nmol/l equates to 8 ng/ml which is seriously deficient. So that’s relatively sortable and they are starting you on injections so that’s good.
Your lack of brain lesions may of course mean that you don’t have MS, pending your LP of course, given that you do have a few oddities in your spine.
Parietal cell antibodies are for vitamin B12 deficiency, so that’s good. Aquapoin-4 I don’t really understand, seems to relate in some way to kidney function, but negative seems to be a good thing!
However, the potential for coeliac disease would bother me more; whatever you do, don’t start a gluten free diet whilst you’re being tested / investigated for coeliac. It completely skews the results of any tests they do. One of my brothers has very severe coeliac, so I do understand it a bit. If in fact you are coeliac, then it should be possible to control it with diet, so I would suggest that you keep on top of getting that resolved.
So, as you’ve now figured out, there’s still a whole bunch of things to rule in or out as well as MS. It seems that it’s a pretty amazing thing, the human body. There are a zillion things that can go wrong with it. But in the process of identifying what’s actually wrong, you can find out a ton of stuff that is working right!
Sue
Hi, I can’t answer all of your questions, however a friend of mine has been so poorly this last year, so visible and hardly able to walk etc. It turned out her vit D level was v low, since she’s been taking the supplement she looks and feels so much better. Unbelievable how one vitamin deficiency caused so much illness. It was thought she had ms for a while. All the best x