MRI: White Matter Lesions?!

[lenora]

Hello everyone.....Thanks for the info. I had autoimmune encephalitis just over a year ago.

This sounds very similar to Mollarett's Encephalitis and prior to that I had a number of very serious hospitalizations, all with different causes - 8 in 9 mos., and also came away with a number of stents and had 2 separate spinal taps (much, much easier today than they used to be...at least if you don't have bad knees like I do). If this is the only way they can make a diagnosis, then I simply have to undertake it.

During this time I also developed epilepsy. Fortunately I was in the ER and there were doctors present when seizures occurred. I have two different types and will be on meds for the rest of my life. Epilepsy becomes more common with age. I've had no more attacks, but broke a wrist during one of the early ones.

I have been told about white lesions on MRI scans, but it has been a long time since I brought it up with my neurologist. I have a great relationship with mine....and I generally have MRI's every 18 mos. or so. I, too, have been told that the white lesions are nothing to worry about, haven't changed in many years and so I just live with them. It would be nice to know the reason why, but then what am I going to do with the info.?

The day will come when we know. As we get older, the brain shrinks. The very worst memory problems I've had have been as a direct result of the autoimmune encephalitis. No, they don't know much about that at this time, either. There are a few reasons, but none scientifically proven. It did, however, affect my memory and a psychiatrist is used here in the U.S. to determine exactly which part of the brain is most affected. I was lucky in that I didn't have a major problem, but I know myself that my memory isn't nearly as sharp as it used to be. To me, that's the most worrisome outcome of all of this.

There have been so many unknowns over the years (I'm in my mid-70's) that one actually learns to live with them, trust in your doctor(s) and just get along with life as well as we can. I have nothing to add to anyone else's experience.....reasons take time and plenty of research. In the meantime, we wait. Yours, Lenora.

 

[vision blue]

While I didnt have hyper intenities/white matter leaions on my brain MRI about 5 years ago, I did have brain “shrinkage” I believe around the perivertricular area (too depressing to look ut up to remibd me) . It was attributed on the report (and by my neuro) as “aging related” but clearly I was too young for that

When I looked it up I found that it and white matter lesions were the two changes seen more often in autoimmune theunatic or cfs patients (truth is I now forget which- i can see if i still have a copy of the paper id anyone wants).

I wonder if this brain shrinkage is the increased space that @Pyrrhus was talking about. If yes, its different than white matter lesions though perhaps sone T2 weighted hyperintenities can be from that?

Reading especially @heapsreal makes me think I reslly shoukd get another MRI to check progress/changes because i too am plagued with a herpes virus affecting head as I mentione in previous post here and a zillion other posts and believe it has caused small vessel disease as well as neuro degeneration. You mentioned for you normally normal blood pressure but then ip to 180 systolic. Does tbis mean you get wide swings? You can answer privately ifyou do t want to post off-topic and i may have already asked this) I do as well (again blaming . this whole process, brain shrinkage, small vessel disease , dysautonomia, sympathetic nervous system overload Amusing you said that when neuros dont know what's going on they claim migraine. I went to a doc and explained in detail the symptoms I was getting in my brain and head including these horrible electric sensations and head flying around that woke me up 30 times a night whenever I started falling asleep and tgat i attributed to the virus affecting head. Must’ve been like a 20 minute description of everything that was going on. And he wrote down one thing “headaches” and said I see a migraine specialist. It woukd be anusing if our lives werent at stake here

 

[lenora]

Hi Vision Blue.....Those electric sensations you get may be what is referred to as Lightening Pain. It goes away in some people and stays in others....I've experienced it, so know that it isn't pleasant in the least.

I have very frequent MRI's.....and have had so many that I lost count long ago. Thank goodness for them....at least in comparison to exploratory surgery (which was a given at one time).

My head has been hurting a lot since my bout with autoimmune encephalitis, but it's more of an allergy type pain. I've had allergies for years and never had this beforehand. It seems to be worse in the evenings for some odd reason and is OK when I'm lying flat. My Dr. has told me he suspects migraines, but as of now I haven't taken the medication for these headaches.

I have a friend who suffered from severe migraines for years....but with menopause they lessened at first, then finally disappeared. I hope you fall into that category. Yours, Lenora.

 

[Springbok1988]

Back in April I had a stroke-like event with numbness on the left side of my body, confusion, trouble speaking, trouble walking, etc. My MRI showed a lesion in my frontal white matter. Ever since then I’ve had bad short term memory issues, intense brain fog, numbness in parts of my body, daily migraines, and a lot of other issues. My neurologist looked at the MRI results and said the lesion was normal and did nothing other than prescribe something for migraines. I’m 33. Nothing about what I experienced was normal.

 

[GlassCannonLife]

I'm about to have a brain MRI in a few days, I'll let you guys know if I have anything strange. Last one was 3 months or so after I first became severe and that was clear.. Fingers crossed there have been no degenerative changes.

 

[Violeta]

Back in April I had a stroke-like event with numbness on the left side of my body, confusion, trouble speaking, trouble walking, etc. My MRI showed a lesion in my frontal white matter. Ever since then I’ve had bad short term memory issues, intense brain fog, numbness in parts of my body, daily migraines, and a lot of other issues. My neurologist looked at the MRI results and said the lesion was normal and did nothing other than prescribe something for migraines. I’m 33. Nothing about what I experienced was normal.

Maybe someone can give you some insight into endothelial function.
"Most previous studies reported an association between endothelial dysfunction or inflammation and clinical events, including stroke recurrence, ..."

 

[heapsreal]

While I didnt have hyper intenities/white matter leaions on my brain MRI about 5 years ago, I did have brain “shrinkage” I believe around the perivertricular area (too depressing to look ut up to remibd me) . It was attributed on the report (and by my neuro) as “aging related” but clearly I was too young for that

When I looked it up I found that it and white matter lesions were the two changes seen more often in autoimmune theunatic or cfs patients (truth is I now forget which- i can see if i still have a copy of the paper id anyone wants).

I wonder if this brain shrinkage is the increased space that @Pyrrhus was talking about. If yes, its different than white matter lesions though perhaps sone T2 weighted hyperintenities can be from that?

Reading especially @heapsreal makes me think I reslly shoukd get another MRI to check progress/changes because i too am plagued with a herpes virus affecting head as I mentione in previous post here and a zillion other posts and believe it has caused small vessel disease as well as neuro degeneration. You mentioned for you normally normal blood pressure but then ip to 180 systolic. Does tbis mean you get wide swings? You can answer privately ifyou do t want to post off-topic and i may have already asked this) I do as well (again blaming . this whole process, brain shrinkage, small vessel disease , dysautonomia, sympathetic nervous system overload Amusing you said that when neuros dont know what's going on they claim migraine. I went to a doc and explained in detail the symptoms I was getting in my brain and head including these horrible electric sensations and head flying around that woke me up 30 times a night whenever I started falling asleep and tgat i attributed to the virus affecting head. Must’ve been like a 20 minute description of everything that was going on. And he wrote down one thing “headaches” and said I see a migraine specialist. It woukd be anusing if our lives werent at stake here

Yes pretty big dwings in bp from 130/70 -180/110, usually high when getting headaches.
In the mid 1980s when Cheney and Peterson were in the Tahoe epidemic they were finding many cfs pts with UBOs on their MRIs, unidentified bright objects. I think they are the hyperintensities but dont quote me. Back then when the technogy was new it was mostly seen in ms or hiv pts but now scene in alot more people. Its not nothing but it could be 100 things so they dismiss it.
My experience is the only value of an mri is to rule out an aneurysm or a tumor, anything else they arent sure of or if you have headaches with it then its chronic migraines.
Theres definitely crap going on but technology cant work out the brain yet. Even lyme pts have similar brain abnormalities to cfs pts.
All we can do is keep our bp normal and homocysteine low which if high indications blood vessel inflammation. Then look into methyl vitamins b12/b6 and methyl folate to start with.

 

[lenora]

Hello Springbok1988......I'm a lot older than you, so you can't say this was a big surprise. Coming up two yrs. ago I felt both of my eyes giving me trouble...first the right, then it traveled to the left. At the same time I was walking for exercise inside my house and spending a considerable amount of time on our porch, in a shady area with a cool breeze, in Dallas in probably July of last year. My husband later said that I had been slow in answering a couple of questions, but did answer them so he wasn't alarmed.

The following morning I awakened, made it to the room I planned to spend the day in....and suddenly my leg was numb, followed by my husband asking me questions that I thought I answered, but hadn't. An ambulance was called. This was my 8th hospitalization in 9 mos., all for different yet serious problems....no trouble before this time, or at least that I couldn't handle with my doctor's help.

I was diagnosed with auto-immune encephalitis and was in a coma, near death for 2 days. My daughter from San Francisco flew in and the one here in Dallas stayed at the hospital. I also had a mild heart attack at that time, but 6 stents were implanted during another hospitalization.

There isn't much on auto-immune encephalitis and it takes both tests and working with a psychiatrist to determine the portion of the brain affected. My memory is not what it was before the attack and I was fortunate, it didn't really adversely affect my brain...at least not to the point where they though it would affect me very much. I had a number of tests run then, including a spinal tap and then another one probably 2-3 mos. later. My memory is not what it was, but things could have been worse. I was fortunate.

I was told that it was an imbalance of electrolytes in the heat, but I'm used to the heat, we sit on our porch almost ever day in the summer and I do go in when it's too hot. I didn't drink more or less than I usually do, and I was always careful about my electrolytes. The bottom line is that not much is known about auto-immune encephalitis, but it's becoming more and more common all of the time. Far more diagnoses.

I also have epilepsy, two different types of seizures, but this is something that can/does become common as we age. Medication will control this for the remainder of my life. I have had headaches since the ocurtence.

Check out your electrolytes...make sure you aren't drinking too much tea or coffee, have enough water, salt and the remainder of them. I can see where you're concerned about stroke activity....and I hope you haven't had a repeat of this event. I haven't. I feel most fortunate. Feel better. Yours, Lenora.

 

[lenora]

Hello I just checked out autoimmune encephalitis again....a whole lot more information than even a year ago. Electrolytes weren't even mentioned. Some of the video answers are excellent. Not a good thing to have.

MRI's are good for many things....but only if the radiologist knows what he's seeing. Unusual things are often overlooked that's why as many doctors as possible should look at the pictures. Hydrocephalus is an example of something that can be picked up on an MRI.

Many, many different abnormalities can be, but finding the abnormality is only as good as the doctors doing the job. It's not easy for anyone...doctors don't want to keep their patients ill. so a diagnosis is in the best interest of everyone. If you have a disinterested doctor (and most of us have had them along the way) fine someone new. This is not easy, but there are more and more names available today than ever. Check with groups in London....it's very hard especially if we aren't in cities. Wishing you well. Yours, Lenora.

 

[vision blue]

Y Its not nothing but it could be 100 things so they dismiss it.

All we can do is keep our bp normal and homocysteine low which if high indications blood vessel inflammation. Then look into methyl vitamins b12/b6 and methyl folate to start with.

I was going to make that same point about the white matter lesions but less poetically. If something is non-specific, they just ignore it. So if your WBC is low or your SED rate is high, they just shrug- could be anything. Agree used to be interpreted as MS back when the detection threshold of them was much higher (older techonology) so only thye really big ones showed up. Obviously, they should say "abnormal MRI of unknown cause" but of course they dont'

Quick thing on the methylation and homocyesteine, not all with blood veseel issues have high homocysteine. I do not for example. But i'm an over methylnot ator geneticlaly, so would likely take tons to push it into not having enough methyl donors to break down homocysteine whereas someone is is an undermethylator may get pushed into that state more easily. Having high homocysteine does not necessarily indicate blood vessel inflammation and not having high homocysteine does not necessarily indicate its absense.

interesting that you also get bigger than average bp swings. I was attributing mine to dysautononia but i guess if my vessels are stiff and unresponsive perhaps they don't expand and contract quickly enough fo rminute to minute corrections like normal people do , so maybe then there's delays and overcompensation etc.

 

[lenora]

Yes, my BP can fluctuate rather impressively also. My Dr. insists that I have to go on medication for it....and she's right, I do and am presently taking it.

In the early years with this illness, I had the usual extremely low BP....then came early menopause (right, but the symptoms stayed until I was probably 72) and my BP shot to the stratosphere. I'm talking stroke territory...right up to 300 systolic. I'm also on medication (statin) for my very high cholesterol and have 6 stents, and will be getting more. Is this a surprise? Not really as everyone in my family had high familial cholesterol, yet no one died from heart problems. My father did at age 40.

I eat and have eaten extremely well, so it's not me. (My husband has had 2 cardiac arrests, so you know we're careful). I thought I could control it myself....but there is no such choice in my case. I definitely don't want/need a heart attack or stroke. I've already had a mild heart attack, so I'm quite aware of the choices that have to be made.

Ever since my autoimmune encephalitis I've suffered from headaches that I never had before. To me they feel more allergy driven.....but I can't say for certain, although they disappear when I'm lying down. I'm sure it's possible that some of my meds are causing them or, in the alternative, my BP. I have a pretty relaxed attitude towards it all....I'm rather shocked that I've lived this long and can only do what I can for myself. Genetically, I think I'm a bit of a nightmare. Let's just say that you wouldn't want to use me for egg donations.

 

[SWAlexander]

Does anyone else know enough about this subject to comment on the significance of this?

My Neurosurgeon told me that he is worried about "my white matter". That´s all he said.

I researched and found that some Symptoms fit (bold) me:
Symptoms of white matter disease may include:

• issues with balance.
• walking slow.
• more frequent falls.
• unable to do more than one thing at a time, like talking while walking.
• depression.
• unusual mood changes.

 

[SWAlexander]

(truth is I now forget which- i can see if i still have a copy of the paper id anyone wants)

I would appreciate it if you post a link or the paper.
Thank you.

 

[SWAlexander]

Update on white matter.
Abstract
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) subjects suffer from a variety of cognitive complaints indicating that the central nervous system plays a role in its pathophysiology. Recently, the ratio T1w/T2w has been used to study changes in tissue myelin and/or iron levels in neurodegenerative diseases such as multiple sclerosis and schizophrenia. In this study, we applied the T1w/T2w method to detect changes in tissue microstructure in ME/CFS patients relative to healthy controls. We mapped the T1w/T2w signal intensity values in the whole brain for forty-five ME/CFS patients who met Fukuda criteria and twenty-seven healthy controls and applied both region- and voxel-based quantification. We also performed interaction-with-group regressions with clinical measures to test for T1w/T2w relationships that are abnormal in ME/CFS at the population level. Region-based analysis showed significantly elevated T1w/T2w values (increased myelin and/or iron) in ME/CFS in both white matter (WM) and subcortical grey matter. The voxel-based group comparison with sub-millimetre resolution voxels detected very significant clusters with increased T1w/T2w in ME/CFS, mostly in subcortical grey matter, but also in brainstem and projection WM tracts. No areas with decreased T1w/T2w were found in either analysis. ME/CFS T1w/T2w regressions with heart-rate variability, cognitive performance, respiration rate and physical well-being were abnormal in both gray and white matter foci. Our study demonstrates that the T1w/T2w approach is very sensitive and shows increases in myelin and/or iron in WM and basal ganglia in ME/CFS. https://www.sciencedirect.com/science/article/pii/S2213158220302035

Safety and efficacy of leriglitazone for preventing disease progression in men with adrenomyeloneuropathy (ADVANCE): a randomised, double-blind, multi-centre, placebo-controlled phase 2–3 trial

Background
Adult patients with adrenoleukodystrophy have a poor prognosis owing to development of adrenomyeloneuropathy. Additionally, a large proportion of patients with adrenomyeloneuropathy develop life-threatening progressive cerebral adrenoleukodystrophy. Leriglitazone is a novel selective peroxisome proliferator-activated receptor gamma agonist that regulates expression of key genes that contribute to neuroinflammatory and neurodegenerative processes implicated in adrenoleukodystrophy disease progression. We aimed to assess the effect of leriglitazone on clinical, imaging, and biochemical markers of disease progression in adults with adrenomyeloneuropathy.
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(22)00495-1/fulltext

 

[lenora]

As we get older, it's common for us to accumulate more "white matter" on an MRI. It's more than likely a sign of aging in most of us.

I have the same problem....and do find that I trip and/or fall far more easily than I did when younger. Mind you, clumsy has always been my middle name. So, yes, I can see where this occurs and for a lot of us the why. It doesn't mean necessarily mean that it will continue....it just is. Perhaps we all need to do jumping jacks and have a trampoline. (Wouldn't that be an easy cure?) Yours, Lenora

 

[SWAlexander]

Please read: https://forums.phoenixrising.me/thr...or-myelin-repair-in-multiple-sclerosis.90241/

I´m on an antihistamine since March 2022 and believe some of my remaining white matter was saved.
There is a drawback - slight sleepiness.
The biggest histamine producer - precooked food such as potatoes, rice and noodles.

 

[SWAlexander]

I have now confirmation about

"my white matter"

It is Encephalitis.
https://www.hopkinsmedicine.org/health/conditions-and-diseases/encephalitis
and
https://www.braininjury-explanation...VRvzvwVMA9Sb0DzwJIXHoUjz4cMwtbjX5Dw9spo10MD8k

 

[lenora]

Hello @SWAlexander. Are you being treated with an antibiotic, I assume the answer is yes.

I have two different types of epilepsy and came through one attack of autoimmune encephalitis. I was in a coma, so can only tell you the "after" of that story. After many tests, a real life psychiatrist who specializes in the brain needs to make the diagnosis because yes, there can be damage to the brain. I may or may not have another attack. I was one of the lucky ones, my brain, except for forgetfulness, wasn't really affected. Nevertheless it was not a good experience and many people develop mental symptoms and are in hospitals for a time.

It helps to have a diagnosis. Just within the 3 year time span since I had it, they're doing a lot of work in this area. There is a big book (not the greatest, but informative), by a fellow victim, much, much younger than I am. She almost ended up in a mental hospital. Her doctor was one of the first to recognize the symptoms. The author's name is Susan Cahallan and I'm sorry that I don't remember the name of the book....oh, here it has just surfaced, 'Brain on Fire.' If you want to read it, fine....but the information is there. I hope you'll feel better. Yours, Lenora

 

[SWAlexander]

Are you being treated with an antibiotic,

I have been, but I always have the same problem with antibiotics. My stomach starts acting up halfway through the meds and I have to stop.

 

[Methyl90]

I also have these demyelinated areas and the symptoms vary from those related to leukodystrophy to ALS. I'm waiting to repeat the MRI and do the muscle biopsy. Prevalent cachexia, hypotonia, edema, bone demineralization / arthritis, very intrusive neuropsychiatric disorders.