Could anyone shed some light on my initial MRI feedback?

Pixie51

I went for brain, and full spinal mris 3 weeks ago and received a letter yesterday with a brief overview of results to be gone through fully at my next neuro appointment in 4 weeks. I dont really understand the information and wondered if anyone could shed more light on it? The main section i dont fully understand is the brain mri showed 'a few areas of high signal in the supratentorial brain in the deep white matter which are not classical for inflammation/demyelination '.

I realise they are saying its not in line with MS but feel a bit lost. Anyone had any experience of this that could shed any light? Not looking for diagnosis's obviously just if anyone has had this terminology before?
Many thanks
Pixie x

Cher_Alumni

Hi @Pixie51

I haven't heard of that clinical terminology before and wouldn't want to give you inaccurate information from online research.  Believe me, I know how difficult it is not to google and look on forums when you are undergoing tests but my advice is to wait for your appointment with the neuro specialists.  I appreciate 4 weeks must feel like an absolute age to wait, but you don't want to be worrying yourself (perhaps unnecessarily) in the interim based on other people's opinions/experiences.  

I really hope for the best possible outcome, and if you need a place to vent/scream/shout in the mean-time we are here! 

chiarieds

Hi @Pixie51 - All the report seems to suggest is that your referral for neuroradiology included looking for MS. MRIs are great for picking up any signs of MS, & the lesions are often of a certain shape &/location. So looking at your cerebellum, no such lesions, or areas of inflammation or demyelination were found, as you know. I hope Cher doesn't mind me saying this, or perhaps I should say that's just my humble opinion.

Did anything show in your lower spine? I remember you were wondering about tethered cord syndrome. I hope you are keeping well, or as well as can be expected.

Pixie51

Thank you! I guessed that MS was being looked at and from that was kind of ruled out just wondered about the high signal elsewhere. She said lower spine only picked up the spina bifida occulta, i was surprised at this as had a private lumbar mri last year which picked up 2 bulging discs, spinal stenosis and a tear. So seems odd none of this appeared this time. But no nothng regarding tethered cord. So thats that theory of mine out. I have been crippled in pain the last week in buttocks, sacroilic joint area both sides and loss of feeling through groin area. Am at a total loss. Guess I just have to wait and see what she says in March ?
Thanks as always for following up. How are you doing? Xx

chiarieds

The high signal, in my humble opinion, is likely that you had a T2 weighted scan which means that the white matter in the brain looks a darker colour the better to see any typical MS signs. You can get as in your case, some areas that also show up brighter/whiter (the few areas of 'high signal'). Small white spots are usually perfectly normal, & are caused by blood vessels. You can also get areas that show whiter due to what is known as artefact, in other words down to a computer error. 

It seems like back to the drawing board for you! I'm sorry you're having such a rough time; I get sacroiliac joint pain, but just on one side, & know how bad that feels,

I'm doing not too bad, but this cold weather gets to me & increases my pain. I just can't seem to get warm due to my temperature control being all to pot due to dysautonomia. I'm just longing for warmer weather.

Do let us know how you get on in March. My best wishes as ever.

Pixie51

Bless you I do feel for you. Constant pain and the cold is awful. Hopefully spring will bring and early warm up.

I will update in March. Feeling so low right now. My gp more or less said it was all in my head. I just want a life back where my yoga is daily teaching again and walks dont mean needing 2 days rest after. Anyhow nothing more I can do now. Thank you so much and you take care xx

Waylay

@Pixie51

I don't want to worry you, as I'm not an expert, but are you still having loss of feeling in your groin area? If so, this could be a sign of cauda equina, which is an EMERGENCY. Please seek urgent medical advice if this is still the case. 

gillian72

@Pixie51 hiya pixie I've had same brain scans as u , mine came back as multi focal bilateral deep white high signal foci, differentials to concider would include demyelination an premature chronic small vessel ischemic changes so I'm not sure but guessing this is what they have narrowed it down to by ruling out anything else it could be, it's just abit scary not knowing isn't it, I also have problems with my back aswell ?

Pixie51

Hi gillian72 thank you for that. I had SSEP tests on Monday and am going in for a lumbar puncture on the 19th. Sorry to hear you aee suffering too. In some ways I am glad that someone is now taking me seriously after so long, in another and mainly I dont want a crappy diagnosis lol. 
Pix x

gillian72

@Pixie51 hiya pixie, hope ur doing well ? Why r they doing lumbar puncture. I thought they do that for meningitis? I'm wondering if ur disc bulging is pinching some of your nerves in ur back or maybe trapping the nerve as I get the same problems and pain like you ?

Pixie51

Hiya @gillian72 its for ms. They check for o-bands in the spinal fluid. I  have quite a lot of neurological symptoms along with the back pain. I was diagnosed with fibro several years ago and am crossing everything its not ms. Hope you are doing ok 
Pix 

Cher_Alumni

Hi @Pixie51 How's it going today?

I'm glad to hear they are giving you a full MOT, so to speak, and doing lots of investigative tests to explore what might be going on.  Please do let us know how the lumbar puncture goes and we will all be supporting you virtually with it 

@gillian72 I'm sorry you're going through the mill too    Do you have an appointment to discuss those results and the next steps?  I hope so, and that you have some relief from the pain soon.

Pixie51

Thank you @Cher_Scope