Non-specific white matter changes on MRI

[tmarie0183]

When I was first having symptoms and was diagnosed about 1 1/2 years ago I had a brain MRI that showed one small non-specific white matter change, and now a little over a year later I had a repeat scan that showed 5 small non-specific white matter changes.  I have yet to follow up with the doctor, but her nurse called and said the doctor wasn't too concerned with the results, but how can having one spot and increase to 5 over a year not be alarming??  Am I just supposed to sit there until my whole brain is covered with spots??  Has anyone else had this show up on a brain MRI??

[LeoLady]

Hi.  I had an MRI of my brain which was to rule out MS.  The "white spots" are usually (but not always) lesions, which is the hallmark of MS.  I'm certainly not a neurologist, but I researched a lot of information before I had the scan, that's why I know they look for lesions associated with MS.  I wonder if you could take the scan to another neuro for a second opinion...?  Did they use the term lesions?I wish you good luck in finding answers.

[SLEEPY101]

tmarie,
  I was also told I had non specific white matter in my MRI. I was told that there is a difference in the white matter and lesions typically found in MS. My Neurologist told me that white matter is usually found in people with cases on migraines and could be a sign of a audioimmune disease(Sjogrens or others.
I do agree if you feel uneasy about the answer you are given please get another opinion. I am hoping to get another MRI soon to see if there are any changes.

[Carolina]

Dear tmarie and all:

This is what my MRI, from January 14,  said:

"There is mild periventricular white matter gliosis with scattered foci of increased signal through the perventricular white matter of of the frontal lobes as well as within the subcortical white matter of the right frontal lobe, the largest measuring 4mm in diameter."

Now, of course, that sounded really scary.   It turns out, to the best of my ability to state this accurately, that this means that there are scattered little holes (gliosis) in the white matter of a couple of parts of my brain. They show up on the scan.

This is evidently often associated with old age.  I was 67 when the MRI was done, nearing my 68th birthday. 

The doctor wasn't in the least bit concerned about the white matter gliosis.  My husband, who is a PhD Biologist, was on the faculty of a large Medical school, did research on transplantation immunology (some of his work laid the foundations for current transplantation protocols), and taught Gross anatomy for 10 years (he knows the human body, physically, functionally, and biochemically, inside and out).  He also determined that the white matter gliosis is nothing to worry about for ME.

BUT, they can be related to migraines, MS, vitamin B deficiency, and the risk factors for ateriosclerosis (high cholesterol, high blood pressure etc.).

I don't know the age of everyone who posted here, but here is what I found:

http://www.dizziness-and-balance.com/disorders/central/pvm.htm

Causes of periventricular white matter lesions:

Causes of periventricular white matter (PWM) lesions include normal senescent changes (then they are called UBO's, for "unidentified bright objects), small strokes, and disorders related to multiple sclerosis (MS). PWM are correlated with vitamen B6 (pyridoxine) deficiency.

My physician determined that I do not have MS (I had a spinal tap after this MRI), but you need to get clarification from your physician and perhaps a second opinion.

The hard part is that doctors give us results, or throw out terms, without realizing how scary and confusing they can be.

I hope this is a bit of help.  We are all dealing with so many different issues and different levels of the insanity of Sjogren's.  All we can do is share what we know, and try to support each other.

Kisses

Carolina

[SLEEPY101]

I am 31 but it does make since that your MRI would change as you age

[Shashi11962]

My physician determined that I do not have MS (I had a spinal tap after this MRI), but you need to get clarification from your physician and perhaps a second opinion.

Carolina, did you know that an LP is not definitive in ruling out MS, especially when you have an MRI with white matter changes? LPs can be negative, in fact, MRIs can be normal, and you can still have MS. (Many neurologists aren't even doing LPs to diagnose MS anymore because they aren't that reliable.)

That is what is so dadgone frustrating about trying to get a diagnosis of anything. None of the tests are conclusive! I've gone for the past four years with my doctors telling me they think I have MS, but with all of the tests normal. Then my ENT says that she is certain I have SJS, but again, my tests are normal. You'd think that is the end of that, but no, turns out these tests can be normal and you can still have SJS or MS or whatever.

So, when does a negative test really mean that you don't have that condition? It seems that negative doesn't really mean negative anymore. Why can't there just be a definitive test that you can take that says yes you have it or no you don't and none of this, well, it's negative, but... stuff. AAARRRGGGHHH!

Sorry, I think a bit of frustration just surfaced there.

[tmarie0183]

Thank you everyone for your replies.  The MRI report stated white spots and also called one of them a lesion.  I follow up with my neuro and my rheumy next week so we'll see what happens.  I just turned 27, so I don't believe that I am old enough to have these spots due to aging.  It just worries me because the reason I had the repeat scan was because my symptoms of numbness/tingling, weakness, and neuropathy were getting worse.  This is all so scary, and not knowing "exactly" what is wrong with me makes it worse.  Thanks again guys!!

[Carolina]

Wow, 27?

All my good wishes!

Keep us posted.

Carolina

[BonusMom]

My recent brain MRI and CT scans didn't show any lesions but a calcified maningioma--a brain tumor.  I'm seeking an opinion from a neurosurgeon at UCSF.

[Rhonda]

My recent brain MRI showed that I have lacunes and a calcified hemangianoma.  The lacunes are apparently "infarcts".  I am concerned about the results, but am waiting for my rheumatologist to see the report before I get too worried.  The neurologist said it means I do not have MS, but then said it wasn't a sure test for MS either.  How frustrating.   I am 50, so guess, it could be from aging?