MRI-Evidence of Demyelination in Brain

[poeticsoul]

So, I got a letter from Dr. Duncan, my MS Neuro, at the MS Center, about my recent MRI's I had there.

In short, it says:
MRI Brain-there is evidence of demyelination seen in the brain which is nonspecific in distribution and appearance.
There is no gadolinium enhancement to suggest active inflammation.

MRI Cervical Spine-there is no evidence of multiple sclerosis involvement of the cervical spinal cord. There is no gadolinium enhancement to suggest active inflammation.

MRI Thoracic Spine-there is no evidence of multiple sclerosis involvement of the thoracic spinal cord. There is no gadolinium enhancement to suggest active inflammation.

He also asked for any previous MRIs to compare. I gave them the cd from my most recent Brain MRI (Nov-13) but never had T-spine done till now and have to get my C-spine one from Nov 13 too.

I know there are other reasons for demyelination but from what I've looked up, I certainly don't have any of the reasons I found! (Acute‐disseminated encephalomyelitis, Acute haemorrhagic leucoencephalitis, Progressive multifocal leucoencephalopathy, HIV, Acquired metabolic demyelination, Hypoxic–ischaemic demyelination, Compression‐induced demyelination)

So next up, is my evoked potentials-visual and somtosensory-on Oct 7th and then the LP on the 14th. Still have to make appt. for the urologist to have the urodynamic study done. I go back to the MS Center on Nov 2.

Have any of you had similar MRI findings-being told there IS demyelination seen in the brain?
My older MRIs have shown several small white matter lesions, over the last several years, but this is the first time ts ever been said there is evidence of demyelination.
Thanks!
Cathy

[jreagan70]

MRI Brain-there is evidence of demyelination seen in the brain which is nonspecific in distribution and appearance.

My immediate question is, if what's showing up on your MRI is nonspecific in distribution and appearance, what makes your neurologist and/or the radiologist think it's specific-looking enough that they think it's demyelination? Usually for nonspecific findings, the radiologist includes other nonspecific possibilities in the assessment such as migraine and ischemia. So something's missing from the description if one or both of them can say the findings are nonspecific but they're able to determine that it's demyelination. Without more information, those two things don't go together.

MS lesions look a particular way, so nonspecific lesions don't point immediately to MS.

I know there are other reasons for demyelination but from what I've looked up, I certainly don't have any of the reasons I found! (Acute‐disseminated encephalomyelitis, Acute haemorrhagic leucoencephalitis, Progressive multifocal leucoencephalopathy, HIV, Acquired metabolic demyelination, Hypoxic–ischaemic demyelination, Compression‐induced demyelination)

There's a bit more homework you need to do, because, according to your signature, you do have conditions that can be demyelinating. Both lupus and Sjogren's can cause inflammatory demyelination. There are articles in the medical literature about how the neurological signs and symptoms of both can be mistaken for MS. When I first started seeing one of my neurologists and he was getting familiar with my case and my MRIs, he asked me a couple of times, "Are you sure you don't have Sjogren's?"

So if your "demyelination" is nonspecific but your neuro still feels confident enough to call it demyelination, it's possible that the cause may be either lupus or Sjogren's and not MS.

Or it's possible that, being an MS specialist, your neuro thinks every brain lesion looks like demyelination. Just like if you're a hammer, everything looks like a nail. If you've had nonspecific lesions for several years and nothing that looks more specific (like characteristic MS lesions) has developed, it might be that what's causing your lesions isn't MS. And if there's been no change in your MRIs from you earlier ones, another possibility is that the cause of the lesions was a short-term condition like a virus.

So after all of your test results are in, it will be interesting for you to have a pointed discussion with your neuro about how nonspecific lesions are "evidence of demyelination," what the chances are that lupus or Sjogren's is causing inflammatory neuropathy (even though your latest MRIs didn't show active inflammation), and what the rationale is for whatever it is he diagnoses you with.

[poeticsoul]

Thanks for replying jreagan.

Well, the letter my neuro sent me wasn't the full radiologist's report, just his own letter letting me know what was seen as far as any MS activity and such. I am sure the report has much more on it, esp considering I already know I have spinal issues that will be listed too-bulging/herniated discs, areas of narrowing, etc.

I don't suffer from migraines and have no ischemia history. Those had already been ruled out as a cause of the small lesions found in my brain several years ago.

But as far as issues from Lupus, I have no other symptoms that would point to CNS Lupus-ie: seizures, strokes, etc. In fact, as far as I've been told and blood work, my Lupus is not even active.
Who knows at this point what is causing what.

I've done lots of reading/research over the years, so I do know a lot about Lupus and Sjogren's and fibro as well and how they can be mistaken for MS. But was going by what my old neuro and my rheumatologist have said for years now-that they thought MS was a big possibility-which is why I am now seeing an MS specialist.

I am getting to the point of not even caring or wanting to continue all this testing because after so many years and so many dxs and diseases I deal with, I am just tired of it all. Tired of the making calls, going to appointments, pills, the discussions, the info-overload, the tests and on and on....but my fiance is pushing me to keep going the course of this latest 'trial' and see what the MS specialist has to say in Nov.

I pray, once and for all MS can be scratched off the list! But also, that they can tell me the cause of all these issues-the ones that are in line with MS-are from and make them better and/or stop!

Cathy

[SNOOPY]

Hi poeticsoul,

I'm not sure you fully understand the symptoms Lupus can cause. Lupus can affected the nervous system: http://www.lupus.org/answers/entry/l...nervous-system

Lupus can also cause brain lesions.

[poeticsoul]

Oh, I understand very well how Lupus can affect the body and the nervous system. I've been reading, learning and living it for over 25 years now. lol My fear is that this IS CNS Lupus. From a 'Lupus patient perspective' as far as having CNS Lupus/Lupus of the brain, MS would be the lesser of these 2 evils. Lupus as it is...isn't usually fatal. It is when Lupus attacks the heart, brain, kidneys or lungs, that it can kill us Lupies. I've known of many fellow Lupies in recent years who have died-some suddenly-due to Lupus affecting one of these areas. Its a very scary thing and to be quite honest, I'd rather they tell me I have MS than Lupus of the brain. :/