I found this a few years ago and like everyone else wonder about its' significance or not. It is also interesting that it also relates to Autism. Published in the British Medical Journal blog.
WHITE MATTER THE SUBWAY OF THE BRAIN
blogs.biomedcentral.com/on-...
Keep raising peoples awareness by talking about your condition, we have nothing to feel guilty about by being unwell.
Take Care
Hi Dave
Just read the blog , I personally always thought white matter matters, as a couple of years back I had a brain scan and I was told there were changes to my white matter , but no further action, I couldn’t understand that no one interested and yet symptoms were physically visible, this was a frustrating time for me, now I look after my wellbeing and understand when my brain not functioning properly, I cannot believe neurologists do not seem to be interested. I also believe there is a connection to white matter changes and autism. Thank you for the information
It is one of the many anomalys out there. Needs some sort of study done.
Personally it reminds me of the other term out there when tests don't fit a clinicians view of things. The test is a "False Positive". Then never mentined again.
Take Care
Yes since diagnosed with FND and CFS any high readings or false positive tests I have done are no further action, Take care
Thanks for sharing this Dave , neurologists have told me I have white matter disease I’m 34 years old, but they’ve also been very clear that it has nothing to do with my neurological symptoms and slight cognitive decline and it’s never sat right with me. I don’t have any of the risks associated with white matter disease, I’m like a super healthy very athletic sick person. My neurologist has been suggesting FND and maybe MS for a couple years but won’t diagnose me with either which I don’t have any of the risk factors associated either anyways. I live in this in between world always looking for answers....
Yes the "Fence Sitters" as I think of them. There are a few reasons I think for this.
1. Afeaid of someone accusing them of qrong diagnosis, and poddinly taking them to task over this.
2. They have little understanding of FND, it was never taught in their training and no formal training is compulsory to the best of my knowledge.
I think it is the latter. Research has shown that with FND the quicker support is put in place from Physio, speech and language etc the better the outcome.
Give yourself a pat on the back, exercise and lifestyle play an important role in the recovery from any illness and you have it pegged.
Take Care
Interesting. A scan showed up that I had markedly increased white matter for my age. The test was carried out by a different hospital and doctor (when we were investigating what turned out to be drop attacks). I then developed FND and take full body paralysis daily. When I mentioned the scan result to my Consultant Neurologist who diagnosed me with FND he just ignored it and said it was irrelevant. Like the other commentators, it's frustrating when once you have FND stamped in your medical records you get no more answers.
Hi Louyse, I think that is my point. The white matter is there for a reason, yet there is this idea that it can be discounted out of hand especially when dealing with FND and I suspect many other conditions.
What does white matter do, it carries messages from one part of the brain to the other. Therefore it seems to me that if there is too much or too little there will be a difference in the speed or quality of the information passed.
I am no clinician but do feel a bit more insight to this subject is worth the effort.
Take Care
I thought the white matter was where they thought ms damage was mainly seen. Now they’re thinking the grey matter can also be effected? And aren’t they seeing changes or something in the grey matter with fnd?
That research isn’t that recent? Found it a bit confusing tbh.
It’s incredibly frustrating and baffling when drs say something is irrelevant when it appears SO relevant. I’ve had low (if I remember correctly) white blood cell count for several years now but the gp always dismisses it saying ‘but it’s been like that for several years’. Hmm. And I think this has been going on for several years...
Hi Artmom, like the name.
You are right thelink is a few years old and this is one reason I put it back out there. Yes your doctor may be right in saying that no two people are the same and one persons blood count may be different to another but seriously, if you are unwell and that is consistently low you are bound to be fatigued and out of sorts. Needs to have another look you would think, unless he knows you are on other meds that have that dide effect.
Sorry getting off subject there. there are dtugies to show that white matter damage/disfunction is often involved in emotional conditions and mental health
bbrfoundation.org/content/e...
There is another study which suggests that white matter and its condition will have a strong bearing on the Motor Function recovery of stroke patients. If it is acknowledged that in stroke mobility recovery why is it ignored for those FND patients with motpr deficit.
ncbi.nlm.nih.gov/pubmed/239...
As you state the whole thing is cery frudtrating and I am sure there id relevent papers out there but we seem to be ignored. Ordo we not publisice FND enough.
Take Care
Stress Stress and more STRESS
Had enough.. need to know I'm not the only one.
Do we get easier times from symptoms?
It’s hard to accept FND
