periventricular changes white matter -encephalitis normal for cfs?

vision blue

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I know ive seen this disuccion but my head hurts too much to find it. ditto eyes. Anyway, i thought was told an brain mri was normal. I already suspected there were cfs changes given they hid them as "age related" but am too young for that. Note this result was from WAY back in 2015 when i was just starting to get the nerve misfirings in my head that left me desperate as they repeated over and over again. I've also mentioned these started with my recurrent herpes virus.

ok, so here now how many years later i just see notes from neurologist who i saw again recently- and won't ever again since his note is filled with jabs of disbelief and what he says of mri is
"...trace of periventricular white matter ischemic change"

if that was . Back in 2015, i am quite concerned with what it looks like now given years of repeated episodes, cogntive decline, crazy high bps, labile bp , new onset brain fog, and throbbintg head the mometn i get stressed (I think aneurysm...but dont' know).

so others whose head and eyes hurt less than mine right now can remind me of all the things this means: CFS? accelarated aging from CFS? enceophalitis perhaps a low level smouldering kind, or AI, viral damage, hypertension damage? all of the above? If it were taken yesterday, i'd say wll that's not so bad given all i've been through- but fact it was 7.5 years ago now has me worried about the swish chese it looks like now. Words of encouragement helpful tto - like hell i've had that for 30 years and i'm still alive...
 

Zebra

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Hey, @vision blue

I hear you!

Can't really say more right now, due to illness, but I did find some easy-to-read information from a dizziness and balance center in Chicago specifically about periventricular white matter lesions, which may, or may not, be ischemic.

I know we usually only share articles, papers, etc. from more "high brow" institutions, but like I said above, I think the way the material is presented on this website is a good starting point, and you can do a deep if/when you are feeling better.

I will be revisiting my own MRIs in February or so. Happy to circle back here at that time with any new info or insights I might have at that time.

Here's the link: https://dizziness-and-balance.com/disorders/central/pvm.htm

In my humble opinion, it seems reasonable to ask your neuro (or a more helpful doctor) for a follow up MRI to compare the two.

Sending you a :hug:.
 

vision blue

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Hi @Zebra Thought i hadn't seen you in a while- hoped grazing in a nice green pasture. Hope whatever setback you have is on the upswing again.

Interstingly, i just came across that dizzy and balance center in chicago for unrelated reasons. I wondered why they were posting on something quite far afield but now don't remember what it was. Thanks for the link and for finding the link on PR on white matter lesions; i think that is the thread that I remembered.

i had also read a paper a while back that there were two brain changes that turned up more often in rheumatic AI disease, and I think CFS but not sure, one was white matter hyperintensities, and one was brain shrinkage. I think the latter is the periventricular stuff using synonyms.

Anwya, head already starting to fry again so i better stop typing

(Oh, i agree that any sane person would get a repeat mri for comparison and I also need an mra to check for brain aneruysim,, but question is can i do so. Given the pandemic (i'm unvaxed too), and how MRIs give me tinninitus for a year, and how i'd have to start with a new neuro and make him think it was his idea (....) and the effort that kind of manipulation takes on my soul - and i'm just not sure i can do it. If i've got more brain changes, as i undoubtedly do - what can I do about them? and if I do have an aneyrism, i would not be able to survive an operation, so best thing i can find out is how much time i've got and probability the ticking time bomb will go off each day. I supposed I would like to know, but the cost in exchange seems to high. So i'm stuick...)
 

heapsreal

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White matter legions here, Periventricular T2/Flair hyperintensities. Chronic microangiopathic changes and empty sella syndrome. Ive tried many things for headache prevention like different antidepressants. Lyrica probably one of the better meds but continuous high doses twice a day really plonked the weight on and i aint a small guy to start with so i use it as required which helps avoid some of the side effects.

My visit with my gp yesterday he actually came up with a suggestion. To change my bp med from olmesartan to candesartan which he said he has a couple of pts on for migraine prevention. Seems to be a few studies on it being effective for migraine prevention. Although i dont think my headaches are migraines but maybe it can still help. Time will tell.
 

vision blue

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@heapsreal And of course we both have the recurrent virus on head that plagues us- likely not a councidence. Since you still bother to talk to your doctors, what do they say about Your periiventriular changes? Abd how they relate to tGe virus abd to headaches and to brain fog?

on lyrica, i commented on that in my recent post on gabapentin. Helps me as well

for the new bp med, is it a calcium channel blocker by any chance? Thats how gabapebtin is supposed to work

i also have high bp that is very labile and i attribute to the dysautonomia which i in turn attribute to the virud.
 

heapsreal

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@heapsreal And of course we both have the recurrent virus on head that plagues us- likely not a councidence. Since you still bother to talk to your doctors, what do they say about Your periiventriular changes? Abd how they relate to tGe virus abd to headaches and to brain fog?

on lyrica, i commented on that in my recent post on gabapentin. Helps me as well

for the new bp med, is it a calcium channel blocker by any chance? Thats how gabapebtin is supposed to work

i also have high bp that is very labile and i attribute to the dysautonomia which i in turn attribute to the virud.
Drs have said little about my mri abnormalities other than its common in migraines and other headache disorders. They avoid mentioning anything about shingles and viruses.

The thing/s that help me stay functional for work are modafinil 50mg with hydrocortisone 10mg, but not at a high level where i could exercise etc

The BP med is an ARB/Angiotensin receptor blocker. Apparently in its class of drugs its the only one found to help prevent migraines. 2 days so far on it too early to say anything about it.

Up the creek without a paddle i guess lol