Life with MS & EDS

December 18, 2008

This is my brain…

Filed under: Uncategorized — by mseds @ 10:16 am
Tags: , , ,

This is my brain (Sagittal view):

Brain-sagittal view

This is my brain with white spots (3-plane loc view – whatever that means):

brain- with spots

This shows the larger white spot (I think) on the right side of my brain (Axial Flair view):

brain- axial view

I still don’t know if I am reading these things correctly, but I find it fascinating and want to learn more. I was trying to find photos of “normal” brains to compare mine against. My husband had an MRI two year ago and I thought it would be neat to compare what’s in our noggins, but his was on film, not CD (not sure why since they were doing CDs back then.) So, I searched around and found a site that explains Brain Anatomy. The pictures aren’t a one-to-one comparison, but it was interesting to see what the different parts of the brain are called.

Even with that, it only helped me understand the MRI report a little better. (Lisa’s comments a little while ago were more useful. Here are excerpts from the ’08 MRI report:

  • Discrete high signal intensity lesion in the right peritrigonal white matter measuring approx 1.7cm
  • Several discrete high signal intensity lesions specifically in the left frontal periventricular white matter, right frontal subcortical white matter, left parietal centrum semiovale and subtle high signal foci in the left frontal and right posterior parietal periventricular white matter.

If anyone can explain this in plain English or point me to a place that does, I’d greatly appreciate it! Next time I am at the neuro’s office I’m tempted to ask him to pull up the images in the CD. It’s kind of like looking at a baby’s ultrasound picture and having a nurse say, “oh, those are the kidneys” and you are staring at it and having no clue what you are looking at. At least then they have the image up and you are right there and they can point things out. Eventually you notice something that looks familiar, like an arm or a foot and it is so cool. Now I can look at other people’s ultrasound pictures and be able to recognize things. I’d like to get to that point with understanding brain MRIs and it doesn’t seem like you should have to go to med school to know what you are looking at in a picture. I want to understand what’s going on inside of my head. The MRI report was obviously written for a doctor, not a patient. They should provide plain-English details for the patient, too. Hopefully the doctor will take the time to show me some of this at the next visit.

Oh, the report does mention that this could be something else, but the Lyme test I had came back negative. So much for getting to blame this all on a tick!

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15 Comments »

  1. Basically what your radiology report says is, you’ve got classic periventricular lesions suspicious for MS. If you think of the spinal cord as one long tube of fluid that runs from your butt to your brain, there is a center where that fluid circulates (like the core of an apple) in the brain…this is called the ventricles. MS is believed to somehow slip T or B-cells into the spinal fluid and cross over what is known as the blood/brain barrier, or that place where the spinal fluid meets the brain in the ventricular region. It makes it’s way often into the brain matter that surrounds the ventricles, causing “periventricular lesions” classically in this area. Just wait until you learn the term, “Dawson’s Fingers”! Then you’ll pass to MS 201 class! LOL

    Techs and specs aside, I’m sorry to hear you’ve joined the MS Club…the good news (if there IS any with MS) is, the Club already has a lot of members, so you are not alone. :-)

    Linda D. in Seattle

    Comment by BrainCheese — December 19, 2008 @ 2:33 am

  2. I just had my second brain MRI today, I have the scan from this one and the one in 2007 with me, big mistake, I have been looking at them and have found some white spots, terrified it is a tumor!! I should get some information tommorow, but don’t know how I am going to get by until then!

    Comment by Scared — January 7, 2009 @ 10:00 pm

  3. I completely understand! I can’t tell you how many hours I spent looking at my MRI images (they gave them to me on CD) and trying to figure out what they were, what they meant, etc. It’s scary to look at current images and compare them against old ones. I Googled “tumor MRI images” and “Multiple Sclerosis MRI images” and they do look different, even to my completely untrained eye (at least from the pictures I saw.)

    Are you having any symptoms? Multiple white spots tend to indicate MS, but for me if there was something going wrong in my brain, hearing “MS” was far, far better than hear “cancer”.

    I hope that you don’t have to wait too long for your results. Waiting just stinks. I wish I had more words of wisdom for you. I was in the same boat 6 weeks ago. Please let me know what you find out.

    Ivy

    Comment by mseds — January 8, 2009 @ 7:14 am

  4. I recently had a brain MRI to dig a little deeper into an unusually long and painful cluster headache episode. I had white spots identical to this, and in the same areas. My neurologist told me that they aren’t fully sure what they are, but they are common, particularly in headache sufferers. He told me they were a non-issue. That’s a far cry from MS, if we are in fact looking at the same things. Hard to tell.

    Comment by TexRex96 — November 10, 2009 @ 6:40 pm

  5. I just had an MRI on Thursday after having episodes of immobilizing headaches in the lower back of my head over the past few weeks. I was given the images on CD and have been analyzing them over and over. I found multiple white spots depending on the image but the most prevalent is the one in the back of my head where I am having the headaches. It’s in the same spot and looks exactly like the 2nd picture above. I’ve been searching online for any chance that this could be “normal”. I called my Dr. on Friday to tell them what I saw/read and asked for the results. My dr. said the radiology report came back normal but she is going to send me to a Neurologist because they found [insert a confusing medical term] but I shouldn’t worry. After reading about MS, I’ve realized that I have been having these exact symptoms for years and have been complaining about them sporadically during my dr. visits. Unfortunately, I’ve never been able to give them exact examples of how horrible my memory is (because I can’t remember specific examples although I am a very smart and successful woman) or the strange foggy and tingling sensation in my head, tingling in my hands and weakness in my left arm. I jumped to conclusions once I saw the white spots, convinced myself that i have MS once I started reading about it but why would the radiology report come back normal?? Can it be?????? I’m soooo confused. Please help. :)

    Comment by Jaime — November 15, 2009 @ 12:55 am

  6. Hi Jamie! Sorry to hear that things are so confusing now. I think any diagnosis period is the hardest to deal with because there are still so many uncertainties and it’s hard to know what everything could mean. It’s good that you had the brain MRI. Waiting for information just stinks. I had my brain MRI on Wed. and am still waiting on the results. I thought I’d have them on Friday, but didn’t hear back.

    If you are concerned that you have MS, please make sure that they do a spine MRI as well. I know that I shouldn’t look back and wonder “what if”, but I do anyway. After my my initial brain MRI back in 2001 I was told it wasn’t MS because there weren’t enough lesions on my brain (although later found out that there were “multiple” ones.) I really wonder what my spine looked like back then. The vast majority of my lesions are on my spine, not my brain.

    I know how scary this can all be. Since MS is different for everyone, it’s hard to know based on the symptoms you shared if that is what you have or not. I guess the only way to know for sure is for a neurologist to see more than one lesion on your brain and/or spine and make the clinical diagnosis. Please keep me posted and let me know how things go with the neurologist. I’ll be thinking about you!

    Also, please don’t be too scared of it being MS. There are far worse things to have. Several people and doctors have told me that things are so different now than they were even 10 years ago in the treatment of MS. There are several disease modifying drugs on the market now that slow down the progression of MS. There are medications on the market that can help with symptoms, too. The part that I’m most grateful for, in addition to the drugs, is the fantastic on-line community of MS bloggers. I don’t have a local support group, but reading their experiences and suggestions and having each other for support has been helpful beyond words.

    Take care,
    Ivy

    Comment by mseds — November 15, 2009 @ 5:31 pm

  7. Hi there! Sorry I didn’t get to write back sooner. I’ve been out of town. Have you learned anything more from your doctor? Are they still trying to figure out what’s going on? I think it’s hard to hear a doctor say that they aren’t fully sure about something.

    Comment by mseds — November 15, 2009 @ 5:56 pm

  8. Hi
    I recently had an MRI done and I also have that little white dot on the bottom of the second picture. Did anyone posting above find out what it meant when you got your results? I don’t go to my neurologist for another month and a bit, and can’t get in touch with him. I hit my head about 7 years ago, and have had a pain in the right side of my head that goes right behind the eye. Lately it is worse in the morning, and tapers off in the PM, but always there, 7 days a week. Neurologist thought the pain was caused by nerve damage, but not even the opiates are working anymore, i am dizzy, i fall asleep now during the morning when the pain is the worst, doesn’t matter where i am, i wake up after sleeping all night, and my tongue is all sore, swollen and bitten, and i seem to be dizzy all the time. Does this sound like anyone else who has had that little white dot on the bottom of the picture (2nd picture) and if so, what was yr diagnosis. Any comments would be appreciated.
    Thanks
    Jo

    Comment by Jo — May 27, 2010 @ 11:46 pm

  9. It’s so hard to read all this and realize there is so much chance of me having MS. Im terrified! yes i am reading, researching trying to learn as much as i can about this. Still so worried about the treatment. The worse part? I have not been diagnosed yet. My last MRI (last wed) showed like 8 spots that i didnt have last Oct. Waiting to talk to the dr about this. For now, i suffer from the horrible headaches. I guess i am just tired of waiting for an answer. What ever happened with the results for the original post?

    Comment by JB — July 25, 2011 @ 9:35 am

  10. Hi JB!

    Sorry to hear about the MRI results. I was diagnosed with MS back in 2008, but should have been diagnosed back in 2001. Did they check your brain AND your spine? Most of my problems are on my spine, which is part of the reason for the delay in my diagnosis. I know this is a scary time for you. Having MS certainly isn’t the end of the world. For me, it was a far better diagnosis than other things it could have been. As far as treatment goes, there’s so much debate right now about whether any of the standard “CRAB” drugs (Copaxone, Rebif, Avonex, or Betaseron) even make any difference at all. Tysabri definitely scares me because of the potential for PML (a brain infection.) There are new oral medications emerging on the market. I’m about to switch from Rebif (shots 3 times a week) to Gilenya (pop a pill daily!) I’d love to check out LDN, but can’t get my docs to prescribe it. Definitely Google LDN to learn more about that! It looks very promising, but since it’s available in generic and has never had clinical trials on MS patients, neurologists are leery to prescribe it.

    Also, there are a ton of people blogging about MS and many of the blogs are quite good. Folks with MS tend to be a very active, involved patient community, so there are a lot of resources online. Let me know if you’d like any suggestions.

    While there’s never exactly an “exciting” time to be diagnosed with a chronic illness, this is kind of an exciting time for MS. A couple of years ago, a doctor in Italy, Dr. Zamboni, discovered that those of us with MS have malformed veins, particularly our jugulars. It’s called CCSVI and you should definitely Google that! I’ve had angioplasty twice to open my jugulars and it’s a pretty easy procedure. People are seeing amazing results! Restoring proper blood flow, especially with the brain and spine are involved, seems so obvious! A simple ultrasound, when done according to Dr. Zamboni’s protocol, can help you know if your jugulars are functioning properly.

    I’m certainly not an expert, but if there’s anything I can do to help or if you just want to chat, let me know. Hopefully I can at least point you in the right direction.

    Good luck with everything!
    Ivy

    Comment by mseds — July 25, 2011 @ 10:04 am

  11. I found this blog to be very interesting and helpfull at the same time. Back in 2008 my first neurologist did a brain MRI because I had really bad vertigo, numbness tingling in all of my arms and legs and crazy neck pain.So back then when I got my results then he told me just set him to take more b12 and my sinus are congested. Now in 2009 the vertigo went away but I still had everything else and some migraines My gen. Doctor recommended a great neurologist who requested the old brain MRI files then he says we have to do another one because ofyour symptoms and your original mri showed 5mm non specific focus of increase signal seen in left posterior periventricular white matter. Have the second study nothing new is found which he was happy about. 2011 I have some crazy headache attack one where I could move for two days from a dark room and my vision felt like it would shut on and off. My whole body was in pain all over. Then I was at work one day I had to actually levave and go he because my headache was so bad and all of my senses were heightened that they hurt and then my Neuro did another MRI and then he was calling me to come to office ASAP. They found a second one a 5-5 focus of increase signal seen in the deep white matter of the left parietal lobe. 14 days later we did the MRI with contrast he was happy that it showed nothing New and that the second lesion must of been some where in that two year window. However I’m required to do a brain MRI every6month To a year to make sure nothing has changed. He says the lab reports always make it sounds worse then it is better to look at the CDs which I have no clue what he’s looking for. All I have seen in my brain is what looks like a little man doing yoga. He doesn’t think it’s ms but he has to check especially with my track record. herniated discs and my migraines with aura. Besides him I see a great headache center get treated for migraines and some odd thing called primariy stabbing headache. So I think why interested me about this blog and the brain your story is I find myself doing the same thing. Especially since I have to do my yearly MRI this Monday so it’s like a game show what’s in your brain today. Im being positive but it makes you nervous. Because as my wife says nothing normal ever happens to me lol.

    Comment by Benjamin Rosen — December 1, 2012 @ 3:47 am

  12. Then the crazy part the fact my doctor says sometimes not all lesions always show up on MRI for some and that sometimes it can happen in lengthy patterns. This times it’s a more enhanced MRI

    Comment by Benjamin Rosen — December 1, 2012 @ 4:43 am

  13. Hi Ben! Thanks for sharing your story and experiences. Normal? What’s that?! Have they ever done an MRI of your spine? I didn’t know enough to ask for one when I started down this crazy path and that is what delayed my diagnosis. So many neuros ignore the spine, which to me is crazy. It’s kinda a big part of the central nervous system!

    Good luck on Monday! I hope you get some answers soon! I’ll be in the MRI tube this Tuesday and can’t wait to try to figure out what I see on my next set of brain pictures!

    Comment by mseds — December 1, 2012 @ 7:57 am

  14. Thanks for your response and normality. Good luck for Tuesday. I have had originally had MRI of both my neck and lower lumbar spine which just showed some tears and hernaited discs when I had pain. Neuro said we will see Monday what happens and then we may rescan and then possible lumbar puncture(shuddereds) I have sleep apenea so my doctor hopes that’s what might be causing but he dose t think it is for sure. And also it drives me crazy because originally my goal was to stop taking medication. But between many migraine medication and my recent attack with fast growing kidney stones lol what else? So usually it’s one after another but I try to go with the flow but with the brain it’s hard to controll. Though I enjoy the science of it and like looking at the images of the brain

    Comment by Ben Rosen — December 2, 2012 @ 1:26 pm

  15. Hope your MRI went well. Mine says I have two foci of increases T2 single of the left corona Radiata. This was done on a Tesla MRI which is a different one then before.. I’m assuming that these are the same two that they found before but I will see what the doctor says. So far so good

    Comment by Ben Rosen — December 9, 2012 @ 12:37 pm


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