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Avatar universal

brain MRI results confuse me

Hi my name is Mary and I know my post is long, but I am trying to get some answers before I go to my next dr. appointment. I would appreciate any input from anyone :)

I was first diagnosed and hospitalized with an acute MS exacerbation in 2002, by a specialist, after having an optic neuritis attack, noticeable muscle weakness in right arm and left leg, general weakness, hyper reflexia on one side, bladder problems, numbness of fingers and areas of numbness on both arms, pins and needles sensations, gait disturbances, blurred vision. Although my symptoms first began in 1999, they didn't progress significantly until 2002. Since 2002, I have been hospitalized 7 times, each time my dx by hospital doctors was Acute Multiple sclerosis exacerbation. It is now 2010, and I had another attack this month which required hospitalization, this time I had weakness in both legs, extreme weakness in right arm (progressively weaker and cannot use it to drive anymore because of weak grip) extremely slurred speech, facial droop on left side, bladder problems, numb right side of face. These symptoms mainly resolve with administration of IV solumedrol for 3-5 days, however there is permanent weakness and numbness that does not resolve with each attack. With all of the clinical presentations, it seems the doctors feel my mri's are not that bad and neurologists within my insurance refuse to treat me for the ms, although neuros outside of my insurance are willing to treat me for MS IF I pay cash, which I cannot afford.

Here is one of the mri reports, written by a radiologist with 33 years experience:

Findings: On FLAIR sequencing which is a sequence sensitive for demyelination, there is no evidence for mass effect, edema. There are several tiny high signal intensities one predominantly near the anterior limb of the internal capsule at white matter anterior aspect of the lateral ventricle on the left. A second one is seen peripherally in the right parietal area in the white matter at the gray-white juncture and there is possibly a few high signal intensities at the vertex. The t2 weighted imaging reveals no additional abnormality. Brain stem shows no deformity. The vessels at the base of the brain, carotid and basilar arteries show normal flow void phenomena. Internal auditory canals are symmetrical on the sagittal view. One the sagittal view the sella is not enlarged. The ventricular size is appropriate. There is an additional sagittal FLAIR sequence accomplished. Findings are fairly subtle. There is punctate high signal intensity in the gray matter anteriorly as well as the density previously described on the left seen on sagittal imaging. No unusual enhancement is detected.

IMPRESSION:
1. MRI of the head showing findings that are fairly subtle. There is no evidence for unusual enhancement, edema or mass effect.
2. There are 3-4 punctate high signal intensities in the white matter which would be consistent with a diagnosis of multiple sclerosis although the examination overall is felt to be fairly benign.

I would like clarification of my MRI or any advice from anyone out there as to the MRI findings......why so many acute ms attacks with obvious clinical presentation of MS yet my MRI's never seem to have a huge lesion load?

12 Responses
Avatar universal
Hello,

This sounds really strange to me, how many neuros on your insurance list because I would try to see different ones!  You don't mention a MRI of the C-spine and T-spine.  I would think those might be of more significance then a brain MRI with your symptoms minus the ON.  Also, on any of these seven hospital visits did your neuro suggest a follow up LP to look for inflammation in your CNS?

Sorry, as far as your brain MRI goes, I can't really tell you much about what all that means.  All I can say is it is not so much the lesion load as much as the placement of the lesions.  I have all kinds of lesions and am fairly asymptomatic (however that is spelled) and other people will just have one or two that land in prime real estate and cause quite a bit of trouble.

Hope this forum brings you some help with your questions.  Joe
572651 tn?1531002957
Hi Mary and welcome to the forum here.  this is a great community to hang out with - definitely better than the neuros you have been seeing.


how on earth can you be hospitalized 7 times in 8 years for exacerbations and not be on a DMD?  This makes no sense whatsoever except for some hidden insurance regjulations that reward your doctors for saving the insurers money by not prescribing these drugs.  

Can I say your post really makes me fume ?  I am muttering all sorts of unladylike words as I am typing this.  

We know our brains don't work so well these days, but I want to know what excuse all these neuros can use?  

you write ...."With all of the clinical presentations, it seems the doctors feel my mri's are not that bad and neurologists within my insurance refuse to treat me for the ms, although neuros outside of my insurance are willing to treat me for MS IF I pay cash, which I cannot afford. "

not so long ago, before MRI technology became readily available, Neurologists used only their skills with clinical observation to make this dx.  Obviously your neuros want nothing to do with thinking and want to rely strictly on the technology.

They should also know that about 5% of MS patients NEVER have a positive MRI for lesions.  You sound like one of those lucky few.

And then there is the issue of money and insurance.........  when will our health care for everyone not be contingent on the almgihty dollar and focus instead what is best for the patient?  

This whole situation  shouldn't be - you are incurring more permanent damage with each exacerbation, and that possible could be avoided if they would just give you the drugs.

Ok, my blood pressure is now up and I am sufficiently Pi**ed  the more I type.   I will think about some ideas for you to pursue after I spend some time cooling off.  

in the meantime, welcome again.
I hope you will stick around so we can think through this together.

my best,
Lulu
  
Avatar universal
Hi Joe and thank you so much for your informative post. In answer to your questions, I would like to say that only 2 mri's have ever been done of my c spine and only 1 of my t spine.

The t- spine report is in storage 100 miles away and I need to retrieve it, it is from 2003 and basically said there werent any lesions  but there was a subarachnoid cyst somewhere in the middle of my spine, and I cant remember the level.

The c-spine had no lesions.

The last c-spine done this january had no lesions either and basically said c5-c6 had a minute central disc osteophyte complex without significant dural compression. Bilateral foramina appear grossly patent.
IMPRESSIONS: no significant central canal or formainal compromise. the visualized cervical cord exhibits normal contour and expected signal intensity without abnormal enhancement.

A lumbar puncture was attempted by a regular doctor (not anethesiologist)in 2003. He told me that unless I personally allowed him to perform the LP at his office, I would not be referred to any neurologist for treatment of the ms symptoms. So I was trapped in a corner and I went to his office. His receptionist told me he had never done this at his office before. He performed the spinal tap in his office on an examining table and spent over 2 hours torturing me, left 7 holes in my back as he attempted to do it multiple times unsuccessfully and tried to anesthetize me multiple times. I screamed according to my friend in the waiting room for hours, and she said it sounded like a woman in labor. I ended up jumping off the table during the procedure (youre not supposed to move) and then got back on the table for more torture but the doctor quit trying because he was tired of my screaming.   So since then doctors have mentioned spinal tap and I will never allow that to happen again......

Mary
Avatar universal
Hi Lulu and thanks for such a gracious welcome :). I have read other posts on this website and I can say I am definitely at the right place.

I wanted to mention that my last MRI in January showed  a punctate FLAIR signal within the left frontal deep white matter measuring 3 mm with additional hyperintense FLAIR focus within the right frontal parasagittal white matter.

Is this consistent with ms diagnosis? I know other mri's have shown lesions, but never more than 5, they are usually 2-4, but never less than 2.

Yes Lulu I have been so exasperated by the doctors from my insurance. The last neuro I saw told me to my face, "ms is too expensive to treat so I am going to undiagnose you.' I was shocked and angered that he did this and left me hanging with no diagnosis. He did a visual evoked potential test while I was in the midst of an ms attack with  optic neuritis  and he claimed the results were normal but I really doubt they were.

I really believe HMO's are very corrupt and exercise gate keeping and probably give kick back to these doctors. By the way I have BLUE SHIELD calpers access plus hmo, through my employer, the government.

thanks again and I appreciate any further advice or thoughts you come up with.....


Mary
572651 tn?1531002957
Is that the California government?  The bankrupt one ... maybe that's why they don't want to spend money on your care.

I have blue cross/blue shield too.  And despite my grousing about the copays and deductibles, I have pretty darn good insurance.

Is there an appeal process you can invoke with this hmo treatment?  I would pursue that because there is no legit reason for you that I can see to NOT be on a dmd.  

Perhaps its time to go public with your problem and seek media attn. or post your story on youtube, like I suggest to another member earlier today.  I'm sure your hmo would not like the negative attention.

be well,
Lulu
Avatar universal
Hi Lulu,

You guessed right, california government. I am feeling the crunch with the mandatory 24 hour per month furloughs.  I think they are skimping on our medical care.

I have gone through an appeal process with the hmo's but nothing ever happens.

After much thought, I have decided to consult an attorney and pursue my options.

Hmo's would not like the negative attention, so I am considering taking my story to the media. This is something I have thought about doing in the past and have not entirely ruled this out just yet.



Mary

562511 tn?1285907760
Hi Mary.  I also live in California and know there are ways to cure this problem.  It's not easy, but it can be done.  Give me a little time and I will get the tele#'s and contacts to help you.

My insurance is good, but I've helped others navigate their way through the HMO baloney.  The neurologist who took away your diagnosis needs a public flogging.  Navigating your way with the HMO's is like beating your head against the wall.  It is infuriating.  But I have a few tricks up my sleeve that can make them back down and roll out the red carpet for you.

The radiologist who stated in his report that that the examination is "benign" is a knucklehead.  

If you are comfortable, private message me with the city you live in.

I LOVE a challenge!  

562511 tn?1285907760
I'm ready to kick some booty and take numbers.  :-)  Your story infuriates me.  This kind of crapola is what we are instore for if our government becomes involved in insurance.

The name of this game is to dodge treating the patient, duck, throw up smoke and mirrors, and defeat the patient.  This behavior keeps the dollars in the HMO' pockets.

Arrrr!
Avatar universal
Hi Karen,

Thanks so much for your posts, I appreciate it.

I wasn't sure how to private message, but I live in the city of Inglewood.

Mary
562511 tn?1285907760
Hi Mary.  I will "PM" you so we can talk off forum. You will then be able to respond in private as well.
562511 tn?1285907760
Look at the upper right hand corner of this page and you will see  Inbox  Log Out  My Shortcuts just below the MedHelp box.  Click on the Inbox, there is a message waiting for you.  :-)
1142155 tn?1261770432
Karen, I'm sorry, but this kind of insurance crap is what I've received for the past 17 years as a heart patient without insurance.  I am all for a government option on healthcare.  I have been uninsureable for many years and denied appropriate care for as long as I can remember, and my memory is getting shorter and shorter since the MS diagnosis now too.  Many people on the forum seem to have insurance and I am glad for them.  I feel for those who do not have insurance and I know a bit of what you're going through.  There will be similarities in all our stories.  They are worth being angry over.  Each and every one.  Now if we could just target that anger in a way that gets us somewhere besides around in circles, chasing our tails.  
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