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Avatar universal

Not Sure - Looking for a release right now!

Hi,
Ermmm where to start!  The begining maybe?  Just a warning it might be long!

Soooo...  I went on vacation in Feb to the US, while I was out with friends during the day I had an overwhelming feeling that I was going to pass out (light headed, feeling I was being dragged backwards into a tunnel) but didn't.  We went back the hotel room, I cooled down, took a cool shower, and after an hour we headed out to get something to eat.  Sitting at the counter my right leg went numb and the whole passing out feeling started over.  So we again go back to the room, by now I'm feeling pretty shaky and a little bit worried!   Again I took a cool shower, and sat on the floor leaning against a sofa, I got the numbness tingling, whole passing out feeling again (3 times in the space of 5 hours).  I put it down to heatstroke or something.
Anyway after I return home, having experienced no more episodes I started to develop headaches, always in the same specific place with varying degrees of intesity (left side only).  Well then the passing out thing started again, but I couldn't put it down to heat this time, it was snowing alot!  Long story short, I guess one night I did pass out, having had a major headache for week that no amount of Tylenol would stop.  I got taken to the ER and they were more concerned with the vast amounts of Tyelon consumed over a period of a week than anything (another story!)  I was given a CT during which I was asked have you hit your head hard recently (not sure if I did or didn't when I passed out).  The following day I was given an MRI.  Once out of ICU and on a normal ward, the headaches continued, along with passout feeling and numbness and tingling in the right side of face and tongue (like when novacaine is wearing off).  Unfortunately nobody seemed interested in this and said the MRI was fine.  After getting nowhere, I discharged myself.
I checked in with my own GP and after a week had him agree to send me to a neuro (at this point in time I was thinking along the lines of seizures).  He gave me the letter sent by the hospital to take with me.  Now I'm really inquisitive by nature and had a look, not easy when it's medical jargon, even harder when it's all in German and your German isn't very good!)  What I read and translated sort of bothered me.  Small demyelenating lesion at the tip of the anterior lateral ventricle left side.  They also wrote they recommended futher follow up MRI's.  Last week I requested and received the scans on disc plus the radiology findings. The lesion is approx 11mm in length.  But as of yet nobody in the medical field has even discussed this with me.  All they concentrate on is "you could have seriosly damaged your liver taking so much Tylenol - Well duh, that I know that now!!  (I didn't realise how potentially damaging it could be - I do now)  I don't know what tesla the machine is in the hospital I was in, or the thickness of the slices - could it be there are more that aren't showing up?
So now I'm waiting to see the neuro. Still having headaches but the blackout feeling is not so bad.  There are few other things that I put down to clumsiness (tripping over nothing, walking into stuff), getting old and or not sleeping well(serious fatigue, lack of concentration and so on - I can't remember the last time I had an un-interupted nights sleep) or being a moody cow (just ask my hubby and boss about the mood swings).  I have had an eye exam also, nothing wrong with my vision (he didn't do any opthalmic testy stuff, just the wall chart and is this better or worse).
Obviously I understand this could be anything right now, but all research that I have done with symptoms and the lesion keeps bring me to places like this! (Great site by the way)  I know too much info is as bad as non at all, but I wouldn't say I was unduely concerned right now - frustrated is a better description.
Well, that's about it right now.  Thanks for listening, if anyone can give me any specific questions to ask the neuro on Monday regarding the lesion and symptoms, i would be most appreciative
LB xx
8 Responses
198419 tn?1360242356
Hi LB,

Thanks for joining us!

Well, I am glad that you got copies of your records.  When are you scheduled to go to the neuro?  

I do think something got lost in translation w/that letter.  I've not heard 11 mm described as small, maybe if it was around 3 or 4 mm they may refer to it as small, or may say something like "smaller lesion" as if they were comparing to 11mm.  They can be larger - just trying to give you some context.

While waiting to meet us, check out our health pages.  You will learn a lot about lesions and how they are seen and much about MS.

Sorry your visit to the US was riddled w/the headaches, passing out, etc. And, I hope you get a Dr. who is willing to get to the bottom of what is going on.

Thanks again!
shell


Avatar universal
Hi Shell,
Thanks for the welcome.
LOL I hear you about lost in translation, but even my hub (who is fluent) read the radiology report confirmed that it is infact 11mm in measurementat it's widest point front to back and my guess would be about 4mm across (based on the front to back thing)!  To me that doesn't seem small either!  I have looked at the scan disc (had to download a viewer to do this) and it does seem quite big!  Not sure what else is there because I knew where to look for this.  There are other things that caught my eye, but could well be normal!  This is why I work in personnel and not a hospital! LOL
I've actually spent a good few days reading info on the site, as well as trying to research nice causes of demyelination, and I deceided to jump in so to speak!  you all seem like nice peeps!
I think what's bothering me most is not one single Dr at the hospital mentioned this to either me or my husband, and we still wouldn't know if it wasn't for the letter.  My neuro is on Monday and I'm going to tell him to be straight, not fluffy and full of BS.  Hopefully I will get some answers, if he can't can't them to me I will ask him to refer me to a neuro clinic about an hour away! (in reality I'll probably be a shaking mess!!)
The hospital I was taken to is notorious around here for being awful, it's not my first bad experience there, they messed up an ortho surgery and made the problem worse!  As a result I ended up on crutches for almost 18 months and have a bone graft done by professionals!

My trip to the US was fantastic, never been before, I had a blast (I work with alot of US folk tho, that's why I'm pretty fluent in American! :-)  I didn't have the headaches til I got back, so that wasn't a problem, and like I said after the 3 blackout feelings there was nothing else til I got home!

A little more about myself, I'm English, living in Germany, and I'm 40.
I have no clue what the lesion is or if it's totally insignificant and I'm perfectly fine.  Thing is I don't feel fine and haven't for a while now, I'm normally very active with very few health issues, mainly colds and coughs!

Sorry to ramble, thanks for listening!
L
198419 tn?1360242356
I think we are  nice...lol...though I'm predjudice toward us...ha/ha.

NO worries on rambling.  Saying what's going on is the only way we can offer or 2 cents...I'll not go on, as I want others to join in and make comment.  

Since you've read up on our site, you are already familiar w/what the Dr. should be looking into if MS is in the air.  Best thing to be is a good historian for the Dr. (like you did here - but for the Dr. - leave out the run around you got ..ha/ha) be clear, calm, honest, consise and keep to the point of 'symptoms and happenings,' and the timeframe....

see ya round!


Avatar universal
Well I did the neuro thing today, they didn't even look at the MRI's or CT, scanned the reports real quick.  Didn't seem to want to listen to or be interested in the other things that I been experiencing.  I had an EEG, which was fine, may be they should have done that in the hospital if they suspected siezure activity, I'm guessing 4 weeks later is a little late!
So she tells me I have a stress headache, take these anti-depressants, keep a diary and come back in 3 weeks.  Ugh!
I'll be keeping a diary alright, including everything and will give it to her when I go back.  She was more interested in where I came from! *sigh*
So I still am no closer to finding out anything regarding the lesion that is there right now, what it could be or what may have caused it.

Well that's my frustrated rant, it's late for me and I'm tired (still chasing that elusive nights sleep!)

Thanks for listening!
572651 tn?1530999357
Hi LB,
Welcome to the best MS forum around - I'm sorry I missed your original posts and didn't give you a proper welcome.  Shell has taken good care of you though.

I just want to say welcome to the world of limbo - over half of our members here are like you - looking for answers.  I hope you will stick around, despite the time difference we make pretty good company.

Don't let the frustration ruin your sleep -
Lulu
147426 tn?1317265632
Hi, LilBlu, and welcome to our place of shock, awe, bewilderment and brotherly love.  I'm glad you've been around long enough to get a sense of who we are and even more glad you jumped in to tell us your story.

Your story has me stumped.  First I apologize for the effect Florida had on you.  I guess that wasn't listed in the Visitors Brochure.  I have a couple questions.  It sounds like in the US the "passing out feeling and numbness" seemed related to the heat and that cooling down improved the situation.  Is this right?

But, when you returned to snowy Germany you still had the problems.  Any chance the sensations were related to being active in a heated building or exercising in general while bundled up?  Remember, in the context of MS (which I don't know you have or don't have) even moderate exercise can raise the body's core temp the fraction of a degree to cause the symptoms we have in the heat.

This feeling that you were falling into a dark tunnel...was it like other times you've fainted?  Fuzzy head, vision getting dark or snowy, hearing fading out....stuff like that?  If so , I worry about low blood pressure, low blood sugar, abnormal heart rhythm and things like that.  Does these episodes typically happen while you are standing or also while you are sitting and/or lying down?  If they seem at all related to being upright, then I think you may need a cardiology eval and possibly a "tilt table" test to check for neurocardiogenic syncope.  Any low blood pressure during any of this?

Does the numbness only come along with the faintness or does it persist even through the headaches and between?  I guess I am asking how the numbness behaves - other than badly.  Also, the numbness on the side of your face and your tongue (same side both?) - do those precede the headache and go away once the headache begins?  I'm looking for the pattern of migraine headaches.  Do you or your family have a history of migraine disease?

So now you are still having these symptoms, and looking back have been more clumsy than usual (and you are wondering if this is just getting old??? - NOT)  I gather you are moodier than usual, having some prior baseline of grouchiness.  And fatigued beyond the fatigue you have had before with this history of interrupted sleep.  So what has changed to make you feel even more tired, if anything?  Clearly you think this fatigue is different.

So, you finally do pass out and end up in an ER where you apparently have a high level of Tylenol in your system.  (For the others reading this.  Taking Tylenol at or above the max dose of 4gm/day or combining it even with social drinking can destroy your liver so that your only hope of living is a liver transplant.)  They worked you up, it sounds like, for a brain tumor or a head injury.  This would not be using high resolution or thin slices on the MRI.  Also know that daily use of any of the OTC pain relievers can cause "Persistent, Daily Headache."  This can be severe and is caused by withdrawal from the med itself.  Treated only by toughing it out and coming off the med (acetaminophen or ibuprofen, naproxyn)

Someone thought of a seizure disorder so an EEG was done.  It's okay that it was done a few weeks after the stuff began.  If the tendency was there it will be there weeks/months later.

So, you got the MRI and the report stated you have an 11x4mm lesion at the ventricle.  Sheeesh!!!  And no one has been concerned?  This is NOT a small lesion.  This is a moderate to large lesion.  Within the context of MS they count any lesion over 2mm.

I know I love to second-guess Neurologists, but this one was truly a doozy.  The history you give is NOT consistent with a stress headache.  Depending on the pattern a migraine "possibly," but not a tension headache.  She pigeon-holes you are being a depressed, middle aged woman with a headache and shoes you out of the office.  This was the product of a very lazy and/or mediocre mind!

So, could this be the onset of MS?  Yes, but you are far from having enough info to narrow anything down.  Many people have experienced the onset of their symptoms with feeling mentally off.  Actual fainting is not associated with MS.  However, onset of a new type of headache is not uncommonly reported.

You are having symptoms that arrise from a problem in the brainstem, specifically with the 5th Cranial Nerve, the Trigeminal Nerve.  This would cause the numbness/tingling of the side of the face and the numbness of the side of the tongue if it is on the same side.  Another member has recently told us (Saveone - Terry?) that lesions on the brainstem can cause migraines per her neurologist.

The first thing you need is a better neuro, one who will look at the MRI and at that "Not-related-to-age" lesion, do a thorough neuro exam, and a good history.  Before you can get toward a diagnosis of MS you would need to have the MS mimics ruled out, and another attack.  It seems that you are still in the attack (if that is what it is) from February.  I would also recommend an MRI of your spine with special attention to the brainstem.

With regard to the MRI that you had, when they are ruling out tumors and injury they use a slice often of 10mm.  Since MS lesions can vary from invisible to huge, it is obvious that such thick slices could miss lots of lesions.  The strength of the machine is also important, as is the use of contrast if MS is suspected.

In your case, I would want to have someone distinguish whether these faint episodes of yours are truly faintness or if they are the unsteadiness of vertigo.  The wisdom in the vertigo field is that nobody loses consciousness from vertigo.  I don't know.  If you are fainting - that is a whole metabolic and cardiac work up.  If you have vertigo, then that is often also a problem of the brainstem - or the cerebellum.

I think you also need a sleep study for ruling out a sleep disorder as the cause of many (but not all) of your symptoms.  Also, in MS disordered sleep is very common.

So, my ideas are migraine, syncope, sleep disorder, MS, vertigo....

There is still work to be done.  None (read that NONE) of what you said sounds like stress or anxiety - other than the anxiety of what you are going through.

I hope this helps give some order to a way to look at what you are going through.  This is a great place to stay while you pursue these things.  We have lots of experience with people in your position.

I asked a ton of questions and I really am intereted in the answers.  When you answer would you put double lines between the paragraphs so it is easier to read.  A lot of us have trouble with eye-tracking and lose our place in solid text.

Welcome, again.

Quix
Avatar universal
Thanks so much Quix for taking the time to really read what I had written, not much of what's happening makes sense to me right now, which I don't like!

Your story has me stumped.  First I apologize for the effect Florida had on you.  I guess that wasn't listed in the Visitors Brochure.  I have a couple questions.  It sounds like in the US the "passing out feeling and numbness" seemed related to the heat and that cooling down improved the situation.  Is this right?

                  I was in New Orleans, not Florida, close tho!  Cooling down seemed to help, as in when I went back outside after the first one it started over again.  But the third time I was actually sitting leaning against a sofa in an air con'd room!!!

But, when you returned to snowy Germany you still had the problems.  Any chance the sensations were related to being active in a heated building or exercising in general while bundled up?  Remember, in the context of MS (which I don't know you have or don't have) even moderate exercise can raise the body's core temp the fraction of a degree to cause the symptoms we have in the heat.

                       My office is heated, but I can control the temp, I always have it 'just right', not too warm (Or I find it hard to concentrate and stay awake!!)  Bundled up, sort of but never really wear a hat, just a short down jacket on cold days.  Excercise, I should be so lucky at the moment, I can barely get up in the morning!!!  I took me forever to get my eyes open and focused today!  But last night was bad - more below!  I used to be so active, this is killing me (so to speak), I really want to be out on my MTbike, but just can't muster up the get up and go to do anything

This feeling that you were falling into a dark tunnel...was it like other times you've fainted?  Fuzzy head, vision getting dark or snowy, hearing fading out....stuff like that?  If so , I worry about low blood pressure, low blood sugar, abnormal heart rhythm and things like that.  Does these episodes typically happen while you are standing or also while you are sitting and/or lying down?  If they seem at all related to being upright, then I think you may need a cardiology eval and possibly a "tilt table" test to check for neurocardiogenic syncope.  Any low blood pressure during any of this?

                         Until this I have never experienced fainting before, rarely even getting a head rush from standing up too fast!   "Fuzzy head, vision getting dark or snowy, hearing fading out....stuff like that?" - This is pretty much how it felt/feels.  I had a couple of minor ones last night, just like the fuzzy head, tingly feeling.  Thy happen any time, standing, sitting, laying - no rhyme or reason!  Blood pressure and temp were fine, even in the hospital

Does the numbness only come along with the faintness or does it persist even through the headaches and between?  I guess I am asking how the numbness behaves - other than badly.  Also, the numbness on the side of your face and your tongue (same side both?) - do those precede the headache and go away once the headache begins?  I'm looking for the pattern of migraine headaches.  Do you or your family have a history of migraine disease?

                    Again the numbness only related to to the 'faintness' once.  The rest of the time it's random - even when eating.  Like I said the only way I describe it when novacaine starts to wear off, or occassionaly it feels almost like is puffing up, like maybe an allergic reaction to something, but it's not - apart from zinc against my skin I have no other allergies, I've been tested.  I have no history of migraines, can't say about the family tho, I'm adopted (no medical history ugh!)

So now you are still having these symptoms, and looking back have been more clumsy than usual (and you are wondering if this is just getting old??? - NOT)  I gather you are moodier than usual, having some prior baseline of grouchiness.  And fatigued beyond the fatigue you have had before with this history of interrupted sleep.  So what has changed to make you feel even more tired, if anything?  Clearly you think this fatigue is different.

              The clumsiness has been around for a while, I can trip over nothing, slip and trip going upstairs, and slip coming down, leg giving way like when somebody push behind your knee with there foot - Not fallen over yet tho, off balance.  My legs usually have bruises on them from walking into stuff all the time!
Moodier for sure!  I would never have dreamed of getting 'stroppy' with my boss in the past, now it's often to the point he actually sat me down and talked to me about it, and not in a good way!  Past moodiness was like short flare ups (like 5 mins and I was done and usually right before my period!), now it's much more frequent and lasts for longer.
When I say fatigue, I'm talking about the entire feelings, like extremely tired, no motivation at all for anything, constant yawning (my Mom comments on this all the time when I call her, she say I'mn always tired!)

So, you finally do pass out and end up in an ER where you apparently have a high level of Tylenol in your system.  (For the others reading this.  Taking Tylenol at or above the max dose of 4gm/day or combining it even with social drinking can destroy your liver so that your only hope of living is a liver transplant.)  They worked you up, it sounds like, for a brain tumor or a head injury.  This would not be using high resolution or thin slices on the MRI.  Also know that daily use of any of the OTC pain relievers can cause "Persistent, Daily Headache."  This can be severe and is caused by withdrawal from the med itself.  Treated only by toughing it out and coming off the med (acetaminophen or ibuprofen, naproxyn)

The hospital didn't talk to me about my scans, I had no clue til a week after I discharged and got the report letter from the Dr when the neuro appt was made.  The longest it's lasted is a week right down to intermitent 'stabbing type pain.  Always the same side and same area (Front left)  They were only interested in my use of tylenol and the headache, nothing else I told them seemed to be of concern to them, or my GP for that matter!  The consultant neuro didn't visit me even after being called 3 times by the station Dr.  They did however send the phsyciatrist for my imaginary illness!
Avatar universal

Someone thought of a seizure disorder so an EEG was done.  It's okay that it was done a few weeks after the stuff began.  If the tendency was there it will be there weeks/months later.

I actually brought up the possibility of it maybe being seizures, and I think my GP was humoring me by sending me to the nuero.  At this point I'm still being told it's stress headaches and still don't know about the lesion.

So, you got the MRI and the report stated you have an 11x4mm lesion at the ventricle.  Sheeesh!!!  And no one has been concerned?  This is NOT a small lesion.  This is a moderate to large lesion.  Within the context of MS they count any lesion over 2mm.

The report gives it a 11mm long, I guessed the 4mm, but having looked at my scans yesterday at home, I would say it may be wider than that.  Nope, no-one is concerned!  I just want to know what it is either way!

I know I love to second-guess Neurologists, but this one was truly a doozy.  The history you give is NOT consistent with a stress headache.  Depending on the pattern a migraine "possibly," but not a tension headache.  She pigeon-holes you are being a depressed, middle aged woman with a headache and shoes you out of the office.  This was the product of a very lazy and/or mediocre mind!

That pretty much sums up my feelings too!!  Apart from the migraine, I'm pretty sure it's not that based on other people I know experiences.

So, could this be the onset of MS?  Yes, but you are far from having enough info to narrow anything down.  Many people have experienced the onset of their symptoms with feeling mentally off.  Actual fainting is not associated with MS.  However, onset of a new type of headache is not uncommonly reported.

Mentally off, as in the feeling of being very vague within your own mind and body, almost like you're not firing on all cylinders?  Ermm, difficulty concentrating?  I have that also, people can be in front of me talking and I've either drifted off to another place, or look at them like they are speaking martian or something LOL! Confusion and short term memory too, can' remember things I'm supposed to do, you know the sort of thing, I call them senior moments!!

You are having symptoms that arrise from a problem in the brainstem, specifically with the 5th Cranial Nerve, the Trigeminal Nerve.  This would cause the numbness/tingling of the side of the face and the numbness of the side of the tongue if it is on the same side.  Another member has recently told us (Saveone - Terry?) that lesions on the brainstem can cause migraines per her neurologist.

The first thing you need is a better neuro, one who will look at the MRI and at that "Not-related-to-age" lesion, do a thorough neuro exam, and a good history.  Before you can get toward a diagnosis of MS you would need to have the MS mimics ruled out, and another attack.  It seems that you are still in the attack (if that is what it is) from February.  I would also recommend an MRI of your spine with special attention to the brainstem.

With regard to the MRI that you had, when they are ruling out tumors and injury they use a slice often of 10mm.  Since MS lesions can vary from invisible to huge, it is obvious that such thick slices could miss lots of lesions.  The strength of the machine is also important, as is the use of contrast if MS is suspected.

I actually got the software that is on the scan disc to work on my laptop, I had previously download software on to my desk top.  I would say looking at the slices through the 'smartbrain' image (the little head cut in half in the corner) they are indeed 10mm slices.  The MRI in the hospital is dated, I was sent to another hospital about an hours drive away when I need an MRI on my ankle one time, the images from that are extremely clear.  The lesion ones are not

In your case, I would want to have someone distinguish whether these faint episodes of yours are truly faintness or if they are the unsteadiness of vertigo.  The wisdom in the vertigo field is that nobody loses consciousness from vertigo.  I don't know.  If you are fainting - that is a whole metabolic and cardiac work up.  If you have vertigo, then that is often also a problem of the brainstem - or the cerebellum.

Again, I only 'passed out' one time, I'm not sure how long I was out either, and have never experienced these types of feelings before.

I think you also need a sleep study for ruling out a sleep disorder as the cause of many (but not all) of your symptoms.  Also, in MS disordered sleep is very common.

So, my ideas are migraine, syncope, sleep disorder, MS, vertigo....

There is still work to be done.  None (read that NONE) of what you said sounds like stress or anxiety - other than the anxiety of what you are going through.

I think the same way as you on this.

I hope this helps give some order to a way to look at what you are going through.  This is a great place to stay while you pursue these things.  We have lots of experience with people in your position


Thank you again sooo much for taking the time to answer my post.  I hope my answers to your questions shed a little more light on things.  I find it difficult to describe thigs sometimes, so if you need more just ask

L
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