MRI's and brain lesions in CFS patients

[moonchild]

hi all

my neurologist has sent me off to have an MRI in a couple of days time - to see if we might be able to find something that could be causing the unbearable headaches/face pain/neck pain that have become my dominant symptoms in the last years and not responded to any treatment what-so-ever.

i had never heard of brain lesions showing up in CFS patients until a couple of friends from my local support group mentioned reading about this in 'osler's web'. not sure whether to hope for something to show up or not!

am wondering if anyone else has had an MRI with abnormal results and if there is any treatment or not? any other information you can give would be much appreciated...not sure how much my neurologist or gp will know about this if something does show up that is peculiar to CFS.

cheers

 

[MEKoan]

I did. I have a bunch ("more than a dozen") of "non-specific" lesions which led to a misdiagnosis of MS because of the region where many of them were found - deep white matter and peri-ventricular.

I could have a follow-up MRI if I wanted - this one was done many years ago - but I don't see the point, for me, now.

Don't panic if they find lesions and don't let anyone diaguess you with MS.

Good luck to you!
Koan

 

[moonchild]

thanks very much koan...think i would have been very likely to panic if something does show up and i hadn't been pre-armed with this information.

i guess what i don't understand is why these lesions are seen as a problem in MS but more as a strange occurrence in CFS (or am i wrong?). i don't really see the point in follow-up MRI's either if they do find lesions, unless there is something they are proposing actually doing about them. ugggghhhhh - confused!!

 

[MEKoan]

The lesions in MS are generally bigger or will probably get bigger with time. Our lesions tend to stay small but may grow in number over time. When I had my MRI I was more than 20 years ill.

Also, some people with no known disease have UBOs (unidentified bright objects) on MRI. Of course, so do people with vascular disease. The technology is so new that they really don't know what to make of this finding. I had a pretty primitive MRI. Maybe you will have a fancier and more useful one.

When they did the test, I could see a bunch of tech.s in the room where they were watching it. Mostly they were chatting and only glancing at my scan every once in a while. I thought, well, that's good, I'm boring! Then they all stopped talking and leaned over the screen. Then I thought: Uh oh!

Then, 2 weeks later when I asked why it was taking so much longer for the results to come back than I'd been told it would, the first radiologist told me it was a very complicated and long report and that she thought the UBOs were very significant and that I surely had either vasculitis or MS and, given my age, her money was on MS so I got a radiological diagnosis of "Probably MS". The second radiologist, a man who was not fond of the woman who read it first, scrapped her report, wrote his own and left the differential open.

The neurologist I took it to couldn't open it! OMG, just remembered that. He couldn't open it on his computer and no-one in his office could either. He said the report was enough and he concurred with the radiologist who wrote it because they went to school together. He offered me an LP but I was getting pretty sick of the entire nonsense by that time and decided to just go home and forget the whole thing since I was not the only person with ME who had this finding. He also offered to do the LP right there, right then, even though I did not have anyone to take me home so that I could lie down. He did not inspire enormous amounts of confidence.

It's confusing in the extreme.

I feel your uggggghhhhh!

Don't forget: the times, they are a changing!

 

[kat0465]

lesions here also, i was really surprised. and scared. they said ooh dont worry bout it, we see it a lot with this disease.
dr ruled out MS, but what the heck are they?!!?

 

[MEKoan]

...what the heck are they?!!?

That is a very interesting question.

Aint it?

 

[moonchild]

it certainly is! i don't get why they would be there (something i read suggested a relationship between MS and CFS that was yet to be established) or why they would come and go...strangely enough my dad - who is a biochem professor - did some work on MS years ago and is completely mystified by this. which doesn't help at all!!

i feel fairly confident that i am armed with enough info to convince them it's not MS whatever turns up...first neurologist i saw didn't even see the need for an MRI but then again he had more drugs he thought were worth trying and this one thinks i've pretty much reached the end of that road. have had the reflex tests done and they're normal though and although my symptoms have tended to be onesided they do change around. also i've been through my worst years so it doesn't fit the progressive pattern of MS. if anything does show up in terms of lesions will definitely be going to the appointment with some printed info on incidence rates etc in CFS patients to back me up in case it's not something she knows about.

the idea of lesions (whatever they are) i my brain is freaking me out a little. i'm also thinking though that people might take things a little more seriously if i was able to tell them i had those...wishful thinking? anyway, see what shows up. may be nothing at all...

 

[jackie]

Was going to go rest...but saw this thread and stopped in! I had my first MRI about 12 years ago...it showed 2 small lesions.

I also had a LP done..at the doctors office "NO TROUBLE"! they said! No driver...didn't know what to expect....told to sit very carefully UPRIGHT?! while driving myself home (like I intended to drive while laying down!?) But oh boy...when I DID get home! My CNS fluid levels were too far down (was told later, I should have had procedure done as an outpatient, and used an "Abdominal Binder" afterwards). The ensuing headaches knocked me to my knees (literally!)...could only stay in a prone position for over a week. If they are done at a facility...they ARE usually "No TROUBLE!" and when I have the next one that's where I will be!

Had 2 more MRI's over the years and always showed several white matter lesions...not indicative of anything "special" they said!

The first year of testing I was told "Possible MS"...as I also have Trigeminal Neuralgia (a demyelinating of the 5th cranial nerve)....but the "MS" was soon changed to CFS.

Funny, my husband has ALWAYS felt that I have some type of MS in addition to cfs...and he still believes that. But at this point...my time for any MS treatments helping me are long gone, I guess!

Also have had BAER tests, and Nerve conduction studies (dx'd c-fiber neuropathy, asymmetrical myelopathy) I'm due for a followup of all testing, this year...haven't decided yet whether to bother.

Someone recently posted here that the newer "fMRI's" are the best in SOME circumstances (don't think my ins. would cover them). These are functional mri's where you are performing simple tasks with your hands as you are being scanned, I think. MRI "follow-ups" are generally for tracking.

I don't mind another MRI (the weird sounds always lull me...but I AM very claustrophobic...so I ask for the "open ones"...and then I keep my eyes shut tight, put in earplugs, and I never have had a problem!)

Good luck, Moonchild! Let us know how things turn out!

jackie:Retro smile:

 

[Hope123]

Moonchild, since you're seeing a neurologist, have they talked to you about trigeminal neuralgia? It can cause symptoms like what you described. Getting the MRI might help clarify things.

 

[MEKoan]

Very interesting! I have trigeminal neuralgia as well which is often the first symptom of MS... but it's bilateral TN that is statistically significant more than just one side.

(By the by: Trigeminal Neuralgia responds beautifully to topical capsaicin! I had used Tegretol for years and it was the only thing that worked... until it stopped. Then was prescribed neurontin but it did not work as well and caused projectile you-know-what. Topical capsaicin works beautifully, is cheap and has virtually no side effects when used as instructed. Makes me soooo happy!)

Anyway, I think many people are being diaguessed with MS when they have ME. I don't know what the difference is between atypical MS and ME, for sure. I think it may happen that understanding ME will shed light on MS. In the years since the outbreaks of ME in the early 80s, much more has been written and accepted about "fatigue" as an important feature of MS. Lots of crossover, lots of mushy areas of understanding.

And, Jackie, did you see my neuro?!?! Seriously, are they idiots?! Ok, taking a breath!

PEACE

 

[flex]

I am really confused after reading all these posts. As far as I knew if you have neurological signs and symptoms and you have lesions on the brain that is MS by definition. Sclerosis means scar or lesion and "Multiple" speaks for itself. It would have to be considered a certain size lesions though and also lesions/scars can heal but still leave the damage to the CNS. The appearance changes over time on MRIs.

Nowadays, I was told, MRIs are the gold standard for MS diagnosis. They don't even bother with LPs if the MRI shows lesions. Also you have to get your whole spine MRId. The new generation machines (3T -7T) are much better at picking up lesions that often were not seen in the past. Also only active lesions causing current symptoms are likely to be seen on MRI. When they heal they turn into a "black hole" that's why its important to have regular scans so you can get the full picture.


Once you get passed fifty they will just say "oh some people get these scars in later life". But if you have got MS symptoms, (they are varied and many) and you have Multiple lesions then by definition you have Multiple Sclerosis. The prognosis is actually much improved for MS nowadays and life expectancy is almost normal. Also lots of Docs say the earlier you treat it the less disability you will encounter. Also MS can start very subtly and the symptoms can come and go. It is not necessarily progressive and you can have complete remission after the first episode which could be a short as a week. It is considered MS when you have more than one episode separated in time and you meet all the other diagnostic criteria. If you only ever had one episode which seemed like CNS damaged it would be called single sclerosis. There are four stages of MS, a little googling will explain it further.

Like ME it is also very political trying to get a diagnosis. In my opinion they say CFS when you could well have MS because they know they can dump you. It can be tricky, costly and time consuming to diagnose so sometimes they just don't bother.

What would be really amazing would be if PWMS starting testing positive for XMRV as well as PWME.

Its a great big minefield.

 

[Hope123]

MS depends on more than just symptoms and MRI lesions; it has to be a mixture of symptoms and signs related to both grey and white matter. Diagnosing MS does take time though so you might not get a diagnosis right away.

Right now, as we all know, the definition for CFS is very broad and we don't have definitive tests but there are certain symptoms of CFS not common in most cases of MS.......e.g. acute onset after a flu-like illness, insomnia, sore throat, enlarged lymph nodes, etc.

 

[moonchild]

thanks for the additional replies (and flex, i'm getting more confused now too...). just going to be quick for now - trying to stay off the computer today as the MRI is tomorrow and anything on here makes my symptoms worse. going to be a big stretch to do a 1 1/2 hr stint in there anyway and i can't take the one drug that occasionally helps things a teeny bit in case it masks any inflammation. they have put me in a non-claustrophobia unit which is more open i think because i'm not sure how i'll go with that and also i have the option of sedation which i think i'll probably take!

(not sure what an LP is and don't think i want to ask right now...)

will let you know how it goes and what the results are too. and thanks again for your support and the information.

 

[moonchild]

ps - will get to you on the trigeminal neuralgia bit later too (been seeing a craniomandibular physio for the last, oh 9 months maybe, and she's talked about the trigeminal nucleus a bit with me. also, koan, love your quote at the end of your posts by the way.

 

[MEKoan]

Now, Moonchild,

Didn't you say you were going to try to stay off the computer to rest up for tomorrow! We're not going anywhere - more's the pity - so we'll be right here when it's all over.

I actual enjoyed my MRI because I found the banging noises really fascinating - like experimental music - and I could just kinda float along listening to them!

Rest! You'll be fine!

You can fill us in on TN when you're all through.

Peace to you!

 

[moonchild]

very quick message to let you know i survived it! (wrecked and very sore...don't think they gave me the sedation in the end even though we decided to go with it - all a bit weird). repeated your quote about smiling, breathing and going slowly to myself so many times this morning koan...was SO nervous and it helped to calm me a little, so thankyou.

 

[Mithriel]

I go to an MS therapy centre so I know a lot of people.

MS was diagnosed clinically, still is really and you had possibly MS, probably MS and definitely MS. Nowadays with scans and things there is a feeling that there may be as many as five or more separate illnesses which are now called MS.

I have developed many of the symptoms but like that I was older when I got the scan and it was "within normal limits" so we'll wait and see. I don't know if anyone would admit it, but I think they just wait to see if things get worse so they can say it's definitely something :Retro smile:

I may have ME and MS, I might have XMRV, who knows. I suspect it might just be down to the individual neurologist what they say you have.

ME has the PEM which MS doesn't have but there is a grey area and symptoms are often the same.

Mithriel

 

[jackie]

Moonchild...glad to hear to came through it like a champ! Yep, just laying in one place, very still, for so long can wreck your muscles for days afterward (not to mention what the tension will do!). Let us know when you get your results.

Mithriel...I was older when I had my first two neurological symptoms (47). My "viral cfs onset" (the real start of fatigue, swollen glands, sick,sick,sick!) didn't occur until my early 50's.

My neuro stuff PRECEDED the "viral"....(I would catch the worst colds, flus every year UNTIL me/cfs!..then no more!)

In fact, I'd been having difficulty holding my paintbrush steady for some time and it was affecting my work, increasing numbness in my hands (often unknowingly cutting /burning my fingers) and I had several episodes where I lost color vision (later dx as Optical migraines) but I was too scared to go to a doctor (I was later dx'd with "intention tremors").

What sent me in, soon after, was T.N. I THOUGHT I was having some sort of dental crisis so I went to my dentist who was shocked to dx me with Trigeminal Neuralgia (I was his first "real" case!). His logical conclusion was the start of a demylinating disease so HE got me into a Neuro....started Carbemazipine, later Neurontin.

That got the ball rolling, clinical tests showed decreased pinprick sensations in a classic glove and stocking pattern, hyperreflexia ("worrisome" in his opinion), positive hoffmans, pos. Rombergs, BUT MRI only showed 2 small lesions (not enough in his opinion), BAER (normal range), Lumbar Puncture (within normal range) EMG's etc., further tests indicated c-fiber polyneuropathy and asymmetrical myelopathy, but no explanation why (which he said DIDN'T support an MS dx). There was some talk of a "Motor Neuron Disease" at that point, but then I got a letter in the mail (NOT even a phone call!) saying "I DID NOT have evidence of Amyotrophic Lateral Sclerosis, at this time"! (HMO's!)

The strange thing is that once or twice a year (for 12 years - one period 4 years ago - lasted for 5-6 months) I have exacerbations of terrible nerve pain in feet and legs (and my muscles painfully contract and stay that way!, and the pain in my feet feel like I'm walking on broken brokes!?) When I do complain, my doctor says I'm not getting progressively worse (so no MS, only me/cfs)...and mentions my age (59)!

When I asked why I have to see him every 3 months (for 12 yrs now) he says he's "monitoring" me. BTW...I've had Cervical and Lumbar MRI'S (for back pain) and they just show some disc degeneration. Again, with an HMO...no one is ever going to dx me with MS (and I've never been offered any treatment, although this neuro started me (4 years ago) on long term antivirals as that was what his I.D. colleague was using....and I eventually became HIS patient, too! At least I'm getting treatment for something.

My cog/memory probs are severe enough that my neuro dx MCI last year (wanted me to start aricept/amenda) but my probs were so erratic (up and down, appointment to appointment) and I showed him stats on cfs=cog/memory and he reversed his decision - twice! So now I DON'T have MCI. He does say time for another MRI this year.

What I'm MOST curious about - is that "possible MS" STILL in my Medical Records? (must remember to ask someday)

Thats MY LONG story!...........jackie:Retro smile:

ps Moonchild...LP stands for Lumbar Puncture (or Spinal Tap)...not used that often, anymore, I think. And isn't as big a deal (if done correctly) as I made it seem...sorry...Not to worry!)

oops! just saw you, Flex! YES! That's exactly the "feeling" I got...crummy MRI's "normal" as one gets older!? ha! funny! i was going to comment on something else you said...but I can't remember what it was from 2 seconds ago! yikes!

 

[moonchild]

well, taken me a while to recover and to process it all. had such a flare-up with pain afterwards and still settling really. and then got such a shock when i rang to get the results and was told they were normal. was so convinced after the research i'd been doing that, with the statistics i'd seen and the severity of my symptoms and my illness generally, there would at the very least be some lesions. you might imagine i would feel relief to know that i apparently have a healthy brain but have actually found it really upsetting. primarily because it gives no reason for the headaches/neck and face pain and i am no further ahead there (in fact this seemed more like the end of the road, all the medicos etc seem to have pretty much run out of ideas). and also because i had been feeling that this would be something that would prove to people just how serious it all is and 'show' the pain i am feeling. and i just don't understand how i can not fit into that group if so many of us with this illness really do have those lesions...so, been a bit of another emotional rollercoaster ride really.

 

[Mithriel]

These scans show up massive lesions and abnormalities but you're results are probably "within normal limits" for your age. Basically, they are looking for MS, or some other disease that they know and recognise.

But you already know you don't have one of those, you have ME/CFS where the brain damage is more subtle. Someone like Byron Hyde may well be able to see where the lesions match your symptoms. It is the same with cardiac tests; unless someone knows what to look for our abnormal results are written off as meaningless noise.

Resolution size is also a factor. My friend was told by the eye consultant that her cancer had spread to the back of her eye but the MRI tech told her their was no sign of anything. The eye doctor said it was there but too small for the MRI to pick up.

Also, many of our problems are to do with biochemical processes like mitochondria not producing enough energy and these will never show up in a scan of structure - like a car which will not go because there is no petrol even if it is structurally sound.

Our day will come :victory: but I understand your disappointment - ANYTHING rather than this uncertainty.



Mithriel