New here, any info on white matter lesions ?

[angela1961]

Does anybody know what causes white matter lesions? I was diagnosed with one after having memory issues following being in an induced coma. I have also been diagnosed with cognitive impairment and impairments in 3 other areas(I cant remember which ones). My coma happened after gallbladder removal surgery, my oxygen level dropped to 84 but I felt fine, then the next day I had severe difficulty breathing and collapsed. I was taken to intensive care and intubated. I don't know how long I was not breathing, but when my husband came he was told to prepare for the worst, as it had taken 2 hours to stabilise my just enough to get me to the scan. Hubby was also told that if I did wake up I probably would not know him due to oxygen deprivation. Thankfully I woke up and I did know him. It is only after leaving hospital that I started getting symptoms, memory problems with new information, concentration problems, fatigue etc. lAny ideas if it was the coma or lack of oxygen when I collapsed?

[mel-21]

Hello dear,

I too am desperately trying to find out what all can cause the white matter lesions or spots to show up on brain MRI Beside MS?

The docs and the neurologists have no clue as to what's going on and can not figure me out yet.

They only thing that they say is I'm to young (37 years old) to have them on both frontal lobs but they don't know how I got them. So they thing nothing about them since it says several tiny none specific lesions.

I too saw diffrent specialist with five diffrent neurologists that the last two were at Stanford university Nerology clinics.

My brain MRI was without contrast to but it only freaked out the radiologyst not the rest of the specialists that I've seen.

I too am looking for answer and I want to see if it is really normal to have white spots on the brain that mean nothing.

I think something might have cause them. They just can not appear there out of the blue.

[CCSP-27 in reply to mel-21]

Hi again Mel - I should have added I've had two grand mal seizures (next step fatal) and am now classed as Epileptic More than one episode and they slap the label on !

I don't believe I am - I think it's a side line for whatever is the cause of these multiple lesions.

[Hidden in reply to CCSP-27]

The more you have the more likely you are to mine are finally under control.🤞After years of experiments that went wrong!I find clonazipam a must lamotragine great(that's new and major help)And also carbamazepine but slow release(don't dispaire anyone can get them at any time some never get more so 🤞And just make sure they sort out your meds (if you need them until they are controlled)Any dajavu feeling "weird"or funny taste or smell mine burning or feel "weird" or feeling like you are reliving a day that you have already had just tell anyone or lie down ASAP on your side .Don't eat within a few hours sips of water you will chunder...I really hope you get no more if you do get the neurologist on to it my worst ones I've been out of it for days...So fingers crossed epilepsy of this sort is easiest to diagnose mine showed up immediately (left tempreol lone damage)Orhers much harder to see or not see.Let alone treat.Keep me posted and very good luck🍀

[angela1961 in reply to mel-21]

So far I have not had any further investigations, as I had to change doctors due to a house move, and my new doctors have had other priorities with my health (I had a serious heart attack) but my own reading has suggested the lesion could be related to my heart attack, having high blood pressure and high cholesterol levels. I have been told that I have vascular heart disease now. By the way my dad had vascular dementia, and my own problems have escalated, according to hubby my personality has drastically changed, and I get very angry for stupid reasons. I have lost all motivation for most things and don't want to leave home anymore. Is this all related?? Please help if you can.

[mel-21 in reply to angela1961]

Aww sorry to head that dear. I know that how hard it is to find a right dr that can help us to find a right diagonoces.

I'm still searching for the answer. I am truly tired of going to diffrent specialists and doing multiple scans. I just had another brain MRI with contrast mounth ago. Just to see if there were any changes beacuse I was complaining about my vision. I sent the result to the Stanford neurologist the one that also told me the spots are nonespecefic and I should not worry about them. He just sent me message and told me that the spots look the same and this is reassuring that i don't have MS but we should see what's the cause of your vision problem. So I think he gonna do diffrent scan or more tests to see what is the cause of vision darkening. I just don't understand how and when I've got throes white spots. 😔

I told him that isn't vision problem one of the oblivious MS symptopms and he said not always. I'm afraid that I'll lose my vision before they find the cause of it.

[angela1961 in reply to mel-21]

hello again, since my last post I've been to see the consultant in elderly care psychiatry (elderly care?? i'm only in my 50's) and I have had a follow up CT scan to compare to my last one and have just been told that I have a noticeable shrinkage of my left frontal lobe. any idea what this means?

[CCSP-27]

Oh my goodness how glad am I to have found your post ! I have multiple brain lesions and no one can tell me why. I've run the whole gambit of other possibilities- MS etc and it's all negative.

I've had a brain biopsy for a suspect tumour - negative. Pathology report couldn't confirm nor deny Vasculitis though ???

No results - passed over - we don't know - go away basically!!! Funny enough the Neuroradioligist doesn't agree with the Neurologist ...... Radio thinks it's inflammation Neuro says it's not !

Well what is it then ????

Very frustrating and worrying . I'm very determined to get to the answer even though Neuro tells me there isn't one 😡

I promise to keep you updated if I find out anymore

Susan 😊

[mel-21 in reply to CCSP-27]

Aww so Susan you've been through so much. I was thinking they might have touched one of your important nerve which is vegas nerve during the surgery and when that nerve is irritated you can have al those problems.

I mean passing out and many more. I've learned about when I passed out half way behind wheel. Thanks god I could still turn the wheel and hardly park in the middle of the park. I could not breath well, I could not move my body as I used to, I was feeling heavy and I just turning off on my self. Then some how I felt better I gained back by streanght and jumped out of the car I was shaking and swearing that what happened to me for few minutes. When I get home my sister took me to ER and everything came back normal the only thing that they could tell me was that I had a near syncope or vaysel vaygel episode due to irritation to the big stomach nerve which is called vegas nerve but why they didn't know.

I too had a galbladder surgery fives years ago. I had a very sick gallbladder beacuse of it I had a one week drainage attached on me for one week. Since the surgery my whole stomach system is up side down. Pain, constupation and irritation. I did stomache MRCP ( it's a special MRI for stomachs) and didn't show anything. I kept doing tests seeing gastronologist with no results. I just gave up and kind of make a way to deal with pain.

And now I'm dealing with eye issues and the mysterious White spots.,

It seems whatever happens to me comes from another planet or it's far ahead of this doctors knowledge . Cause they easily turns to me and say we don't know.

[Hidden in reply to CCSP-27]

Bloody neurologist😡😡😬😬Mine the same to complex -£400 cash!!!Last time I get my mum to count out correct money I got a reciept that was it.A referral first for an MRI was all he suggested!That I am not paying £1000 for I don't have it!!I have been going round in circles since October!Got no further other than very cross and skint!!I am back to where I started the medication he took me off a muscle relaxant has made the muscles no less floppy the only thing it has done is started back the spasms in my neck.And feet...

[CCSP-27]

Mel I didn't see your other msg so I'll answer that later - I'm off to the hairdresser. Gotta keep the standards up 😂