Anyone with a 'negative' MRI brain scan had a second opinion?

[Daffodil]

I had an MRI several years ago, which was normal. I had another one a couple of years later, which showed one bright spot, I think...or white spot, not sure.

for some of us, there is global brain shrinkage and no lesions.

 

[duncan]

Yes, I had global shrinkage as well - cerebral atrophy. MRI's - always get a copy of your write-up. You may want to compare what one shop has to say vs another - or better yet, different depts in the same shop. They are kinda like Western Blots - you can take a single blood draw from a single patient, divvy it up and send it to four distinct labs spread out across a country, and sure as you're born, you will have four disparate Western Blot profiles. Each major lab seems inclined to identify the same bands over and over, and the different labs can show different bands. I know what labs from Mayo will look like, just as I do for Imugen, and just as I do for my local lab.

I think MRI reads are similar, certainly in the Lyme community. The only MRI shop I've ever heard universal praise for is Columbia U, and I've never gone there for that.

 

[pemone]

Hello.

I had an MRI recently and was told the result was entirely normal, and with great emphasis placed on the normal part. Due to this I was refused a follow up neurological appointment to discuss my ongoing worsening disability.As happens to so many other patients, I'm just left with everything put down to 'CFS' and nothing further explored.

Does the MRI talk about "mild cortical volume loss" which is language suggesting the brain's overall size is decreasing?

 

[Hip]

@Research 1st
Your poll says "yes I challenged the incorrect diagnosis successfully," but as far as I am aware, MRIs are generally normal in ME/CFS, so it is not an incorrect diagnosis to say that the MRI result was entirely normal. That is a correct conclusion.

 

[physicsstudent13]

I've heard DTI MRIs are better at finding damage like white tangles. Will brain damage from Lyme's disease or encephalopathy show up on an MRI for sure?

 

[Research 1st]

@Research 1st
Your poll says "yes I challenged the incorrect diagnosis successfully," but as far as I am aware, MRIs are generally normal in ME/CFS, so it is not an incorrect diagnosis to say that the MRI result was entirely normal. That is a correct conclusion.

That is correct. Although this is only in relation to if you normal MRI brain scan, is, actually normal because 'normal' is open to interpretation of the radiologist. Without doubt, when reading mild changes it's easy to dismiss them as normal, however on my MRI's I get the actual radiologists report (not the disbelieving doctor letter) and usually the radiologist does mention 'mild' or 'some' changes. Fine if you're 65, perhaps not if you're 25.

Meaning a person would be correct to challenge the opinion, if it wasn't deemed normal by others, hence I asked the question and gave one option of:

''Yes I challenged the incorrect diagnosis successfully'. E.g, it was called normal by the first radiologist, but when a 2nd opinion was obtained, the normal became abnormal.

All brain scans are open to interpretation bias of the radiologist, particularly when the referring letter states the patients symptoms are functional or CFS related.

I say that as I found in one my my scans, the doctor had altered a long term ME diagnosis to one of hysteria!!!

Naturally, the 'mild' deficits found, weren't seen as relevant to any clinical symptoms I was presenting with, as these symptoms were deemed 'functional' (balance, pain, cognitive, memory) before I even got under the scanner.

Ironically MRI's may be the correct method to detect ME pathological changes to the brain, but when using cutting edge software overlays, which naturally as they aren't in common practice aren't used the result is normal!

E.g: CFS brain scans are abnormal using new techniques alongside the actual scan itself.

They applied three different MRI techniques: volumetric analysis to measure the size of different compartments of the brain, diffusion tensor imaging (DTI) to assess the integrity of the signal-carrying white matter tracts of the brain, and arterial spin labeling (ASL) to measure blood flow.

Source:http://www2.rsna.org/timssnet/media/pressreleases/14_pr_target.cfm?ID=772

The above in bold aren't done on a standard MRI we have, that are called 'normal'.
Hopefully one day, they may be.

 

[physicsstudent13]

can you rule out brain damage with just a head CT (the radiation levels and cancer risk is high with CT)?
a head CT raises cancer risk from 40% to 40.5% lifetime and this is SHOCKING 1 in 1800 patients will develop cancer from imaging only

global shrinkage can also be from B12 deficiency, kind of scary to think about this

can a SPECT or ASL test measure oxygenation to the brain as for asthma patients?
http://en.wikipedia.org/wiki/Single-photon_emission_computed_tomography

I have cognitive disability which doesn't show up on an MRI which cannot measure such precious things like clarity and fogginess or oxygenation it seems. I had a neurenteric cyst that grew 3mm between 2 MRIs. The cyst was eroding my clivus.

 

[Daffodil]

you have to do some comparative analysis to detect shrinkage and i don't think anyone in my area does this kind of thing...

 

[Little Bluestem]

I had an MRI a couple of decades ago. It was normal. I think that:
1) it was a brain MRI
2) it was before my CFS diagnosis, so I had no reason to doubt it.

Without doubt, when reading mild changes it's easy to dismiss them as normal, however on my MRI's I get the actual radiologists report (not the disbelieving doctor letter) and usually the radiologist does mention 'mild' or 'some' changes.

I have read that sometimes radiologists don't even mention mild, 'inconsequential' changes in the report to the dr.

 

[Jammy88]

I had a 'normal' MRI, with little dots in the white matter, not considered as a pathologic concern.

Spine MRI was normal, too.

Lumbar puncture showed altered CSF. Thus, something's clearly going on, even though I understand it's not easy to figure it out.

I have dizziness and vertigo, although they were much more pronounced in the beginning of the disease. I'm 100% sure the cause of my disease is an infection and I'm treating these neurological symptoms with dedicated supplements.

 

[Debbie23]

I had a plain, as in no contrast, MRI and also an EEG last year, both were recorded simply as 'normal' despite being a severe patient and having bad cognitive symptoms. The neurologist was perfectly nice and didn't seem to indicate that he felt ME wasn't 'real' or serious, or that it would mean anything about the severity of my ME or my diagnosis if the scan came back as normal. Simply that the scan would just prove there was nothing else there cause the symptoms if that makes sense. Since I was mainly worried about the fact that I felt that the seizures I had at the start of my illness may have been retuning, I was largely content with that. Especially as, as I said, he was honestly really nice about it.

I got the impression he wouldn't have known how to help me beyond reassurance, so while he offered a follow up appointment after my results were through, I politely declined to go back because I didn't see the point of wasting his or my time. Going to hospital is also utterly exhausting for ages afterwards and it it couldn't lead to anything that would have positive effect on symptoms I didn't see the point of wasting energy either. I often wish I had gone back to see what he would have said, but I don't think he could have offered me anything other than reassurance there wasn't anything clearly there to see in the scan that could have been causing my symptoms.

I haven't seen the scans either, I kind of wish I'd asked for a copy. I didn't know you could do that till afterwards. I would be interested (more for curiosity's sake than anything as I'm not sure if anything could be done even if it showed abnormalities) in getting a second opinion from someone who knows about ME and MRI scans but don't know as I can be bothered tbh. I've accepted the results, the neurologist was nice and I had it done for reassurance that it was 'just' ME, which I got.