Good luck for tomorrow Debc xx

Hello Deb, Just wanted to wish you luck for tomorrow. I hope I’ve got the right date! Sam xx

Oh you love, yes, it’s exactly the right date…hopefully tomorrow I will, at last, have a proper explanation of what is happening to me!

THANK YOU so so so much Sam x x

Good luck Deb! (Well remembered Sam!)


Good Luck today Deb! Teresa xx

Good luck Deb x

Good luck Deb… Pat x

Good luck from me too :slight_smile:

Well, I think it’s good news… I don’t have lupus - so that’s very good! But we’re still only ticking things off.

They want me to (16 months down the line without one!!!) at last have a lumbar puncture and also a functional MRI. I still need to have a heart scan too to see why I have a heart murmer.

They’re interested in Hashimoto’s Encephalopathy which the Oxford doc brought up as a possibility although they have to google it to find out about it. Having done that myself I can see why; it’s quite a rare one. He said ‘well you certainly have an encephalopathy so this might be it but I don’t like that such high steroids are the treatment.’

They think I’m interesting - lol - even my referral letters call me ‘a very interesting 43 year old lady’! - and I should be part of a research project. The doctor apologised that the technology isn’t yet good enough to find out what is causing my problems!! Pretty amazing for a specialist huh?

Thank you all sooo much for your ongoing support.

Deb xxx

It sounds like they just have to keep ruling things out Deb and eventually they’ll get to a dx. At least they find you interesting. Lol! Hang in there - your day will come. Teresa xx

SO pleased that they are on the case! Functional MRI is a lot more interesting than MRI because you get to look at stuff while you’re in the scanner, although I must have used the most boring thing ever in my experiments (gray lines of varying thickness!) so my participants probably wouldn’t have agreed :slight_smile: I hope it’s not too long before you get a definitive answer. Karen x

It’ll be very interesting…does it show teeny tiny abnormalities or just have an entirely different purpose? I’d like to be wired up for a sleep study too so they see the myoclonic jerks as I drop off and see if the electrical discharges I feel can actually be monitored. Given how violent my surges are and how disturbing the burning pain is I’m shocked there’s nothing to show for it.

I think I’ll end up being diagnosed with JWS… ‘Just Wierd Syndrome’!


Really pleased the appointment went well xx I was going to ask what a Functional MRI was - thanks Karen. You are really testing their knowledge! I hope they can give you the right one very soon xx I love the Just Weird Syndrome! Sam xx

Standard functional MRI (or fMRI) basically measures blood flow in the brain. The body sends lots of blood to areas of the brain that are active. The difference in oxygen levels between blood that is new and blood that is exhausted creates a change in the magnetic field that’s detectable by the computer. (Rather unintuitively, active areas have more fresh blood than other areas - the body doesn’t like to risk not sending enough :-))

So, e.g., if you are lying in the scanner doing nothing but gently tapping one finger, the computer detects excess oxygen-rich blood in your motor cortex (the furthest back bit of the frontal lobe, on the opposite side to the finger). If the scanner has been set to pick up information from tiny voxels (have you read the Sticky “guide”?! :-)), it will show activity much more precisely - right where that finger is controlled. Same goes for any task. Get asked to imagine pain? fMRI will show what parts of the brain are involved in doing it. Look at pictures of faces and a place called the fusiform gyrus is activated. Do your times tables, parts of the brain that control language are active (bet you thought I was going to say maths, not language :-)). It’s amazing technology - we can basically map anything! (Assuming you can come up with an experiment that works and that’s not so easy.)

For those who are curious, the basic experimental technique is the subtraction method: get someone to do exactly the same thing twice, but on one occasion add the thing that you are interested in. When you get the results, subtract the two and the areas that are still active are the ones that did the extra thing.

I know I’m a geek, but surely anyone can see that that is COOL?!

K :slight_smile:


It is actually !

Oh Karen, I’m all embarrassed now, I didnt mean for you to go into all that detail. I’m glad you did though, very cool. Sam xx

Any excuse, me :slight_smile:


HI Debs - glad to here they’re finding you interesting. It certainly sounds like they’re ‘on the case’ now, so here’s hoping you soon have some answers. Keep us posted, won’t you?

And Karen - WOW - you give such brilliant explanations of what’s going on. The human body is amazing - and I guess we only understand a tiny part of how it all works!

H x

Hi Debs,

Having Lupus myself I’m really pleased that you haven’t got it, but wow, well some strange thing that I can’t spell or even heard of no wonder you’re a mystery woman. Hope they discover what it is very soon.

Karen, that was very interesting, thank you.



Hallelujah…truth prevails! The neuroshrink has discharged me as I’m ‘clearly not depressed, somatic or in need of his help and should go and keep searching for what is really wrong’ OH YES BABY … one happy bunny

Obviously I’m restraining any temptation to be rude in an immature ‘shove that up your a#se neuro’ kind of way!