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Aquaporin?... Subcortical?...

Hope everyone is feeling a little better today, now that the weather has cooled down a bit!

Now, I've been burying my head in the sand for the last few weeks, since my diagnosis. I read the consultants letter when I first received it, didn't understand most of it, and set it to one side. Almost like I was trying to deny it's existence, and I WASN'T actually diagnosed... I am now dusting off the sand, and trying to make sense of it. There are a couple of things I don't 'get', and have googled, and searched the forum, but everything I find is far too complex for me to take in. I am due to see the MS nurse, but not until mid September, which is a long way off.

What are Aquaporin markers? Am I right in thinking that these are markers in the blood that show that demyelination has taken place?

Also, I have periventricular lesions, which I understand are in the part of the brain that controls walking and memory, but also have 'Subcortical lesions'. I can't find anything I understand on subcortical lesions. What bit of the brain is this?... I am just wondering if knowing where it is will give me some indications as to what symptoms fit in with it, if you see what I mean! For instance, today I've had mild pins and needles in my right foot. They lasted a few hours, but seem to have gone now... I'm guessing as they were for less than a day it doesn't count as a relapse, but it might be a 'flare-up' of an old relapse that I ignored at the time (blaming it on my weight, being unfit and getting older!)....

I didn't have the spine MRI'd, but the consultant has also said she suspects myelitis, as I do get that 'wonderful' vice-like grip that we all know and love as the MS hug... Really, all that is confusing me is the Subcortical and aquaporin bits, as I don't know what they are!

Ben
I have MS

Loretta, have you seen the 'sticky' thread right at the top of this list by forum member  Rizzo?  'A Brief Beginners Guide to the Brain'. http://community.mssociety.org.uk/forum/new-diagnosis-and-diagnosis/brie...

 

 

Inactive user

Yes, I read through. Had real problems getting it to sink in, but it sounds like the Cortex is the outer 'wrinkly' bit and referred to as cortical, but what does subcorical mean? Is it simply 'in the cortex'? I also can't find any reference to the aquaporin when I search the forums. Apparently I had inflammatory markers that included aquaporin. Tried reading online but it's all very scholarly articles rather than written for the lay man.

Sorry - having a real brain fog day. Probably not the best day to decide to get a grip and try and understand what's been written!

Hi Loretta,

With all due respect, I don't think it's necessary to understand technical reports by medics - intended for other medics - in that level of detail, to be able to comprehend and manage your own illness.  I consider myself pretty well-informed about MS, and in the early days (been diagnosed nearly 5 years now) gobbled up every piece of research available.

But I still do not know in detail the anatomy of the brain, or indeed, exactly where my lesions were/are in it.  Why?  Because, although in theory, the location of visible damage should correlate with physical symptoms, in practice, it's much less straightforward.  You can have lesions with no corresponding symptoms (known as "silent" lesions) and, conversely, symptom-causing lesions which did not show up on the scan - perhaps because they were too small.  So the idea that you can just interpret your scan results and relate this to individual symptoms is over-simplistic, to say the least.  The theory is sound, but in practice, it works poorly - your scans are not a reliable predictor of disability.  Some people can be walking around with a head full of holes, and not even know it!

Peri-ventrical does not relate to a particular function of the brain, but just means the lesions were adjacent to the ventricles.  The significance of this is that it's characteristic of MS, so assists with confirming the diagnosis, rather than predicting what kind of symptom or disability you may have.

Despite being diagnosed for years, this is the first time I've ever heard of aquaporin - although that may be at least partly because I've never had a lumbar puncture.  Nevertheless, I'm confident whatever it is wasn't in your blood, because another characteristic of MS is it doesn't show in blood - the only purpose of the blood tests is to rule out other things that might.  So aquaporin could be a marker of demyelination that was found in your spinal fluid, but not, I think, your blood.  The central nervous system is a closed system, separate from the circulatory system, so the point of doing a lumbar puncture is, among other things, to distinguish between disease processes ONLY affecting the CNS (won't show in blood) and disease processes of a more general nature, which would.  There should be no way damaged myelin could ever enter your bloodstream.  If it did, something even stranger than MS is going on!

But seriously, it's great to be informed about your illness (I'm shocked, sometimes, that people don't seem to have made the effort to find out the basics), but it can go too much the other way.  If you don't want to get constantly bogged down with doctorate level information, you have to have some sort of strategy for learning only as much as is practical and useful for you, and accepting the rest is only for people making a career of it.

I'm not suggesting someone with MS couldn't make a career of it, if they were so minded (and started young enough), but bearing in mind the fatigue (mental as well as physical) that is so often a feature of the disease, you have to give some thought to whether you want knowledge to rival your neuro's, or just a sufficient day-to-day grasp, and leave the rest to the experts.

Tina

Inactive user

Hi Tina,

Thanks for the comment. I think I'm probably getting myself in a bit of a tizz over it all. Things in the letter weren't explained to me at the appointment, like a terminal tremor I apparently have, and brisker relfexes on the right hand side.... Was getting exasperated by trying to understand what was in the letter so I could better understand what's happening. I like to understand everything in detail - I've always been one of those people that researches everything and tries to absorb as much info as possible, for instance, I lecture on basic genetics to breeders, based on research I have done myself over the years. It's all self-taught, and started when I worked many years ago at a horse racing stud as kid. I wanted to know why foals were different colours to their parents, and started to study and learn about genetics. I'm a bit of a nerd like that!

Out of interest, the aquaporin was in the blood test, and it was written in the letter something like 'the blood sample showed inflamatory markers including aquaporin', or something similar. I guess the aquaporin is typical to demyelination.

I will ignore the letter. Just wish it wasn't such a long wait for my MS nurse appointment. Don't know how long I will get with her - hopefully not just a 10 minute slot!

It's the new era, now, where we're entitled to see everything that's said about us - whether or not we have the background and qualifications to understand it!

Whilst I do think that's good in terms of patient transparency, one unfortunate consequence is we're now bombarded with stuff that was never meant as "patient information", but instead is professional jargon between doctors.  We can't understand this rubbish, and the truth is, we were never meant to - however, we now have a "right" to see it, regardless that it baffles, confuses, and occasionally alarms, rather than actually helping.

I'm still sure MS doesn't show in the blood.  If it did, diagnosis would be so much easier, as we could all be diagnosed with a simple blood test, and that would be that.

There are some "MS-like" conditions that do show in blood, but if you've already been conclusively diagnosed with MS, I would think any inflammatory markers in the blood are probably incidental, and not clinically significant.

Tina

Inactive user

I'm not surprised by the inflamatory markers being there, as I have had knee pain for years, as well as a couple of finger joints. I was told by the doctor a couple of years ago, after the x-ray results came through, there's nothing wrong with my knee despite being in pain.

I've just found something I can understand. It's an NHS website, that states 'Approximately 80% of people diagnosed with NMO have Aquaporin 4 antibodies in their blood.'. Perhaps it's limited to patients who have ON.

http://www.nmouk.nhs.uk/healthcare-professionals/aqp4-antibodies

I remember when I had the blood test done, she filled in a special form for Oxford Radcliffe, as they were doing some kind of study or something. Perhaps it's a relatively new discovery...

I did see that, but didn't want to worry you - I should have known you'd Google it anyway.  I discounted it anyway, as I'm sure you wouldn't have been Dx'ed with MS if they were still deliberating whether it might be NMO.  So I'm not really sure what it means - if there were question marks over the diagnosis, I'm sure you should have been told.

This is an example of exactly what I meant about too much info causing more angst than enlightenment!

Tina

Inactive user

To be honest, I just find it fascinating. I'm still the same person I've always been, no matter what label they put on me.

The letters do nothing but raise more questions for people. It would be nice if the consultant would tell people more at the consultation. I knew nothing about the terminal tremor, and the first bloods done by the GP that the consultant referred to showed inflammation (when I rang for the results was told they were all normal). I would far rather know things than have them hidden, until I receive a letter I don't fully understand.

Thanks Tina, for having the time and patience to 'chat' with me! It seriously has helped!