Monday, March 26, 2012

MS.. looking at the ugliness of our brain lesions.. and still smiling!

I go in for my next batch of MRI's tomorrow so my neurologist can see if I have new lesions in my brain or if my old ones are active once again.  I'm hoping I do not have more lesions as this would indicate advancement in my MS and the more the MS moves forward, the more my health goes backwards. 

Most of us have seen this type of MRI picture, right?
Years ago one of my former, and absolute favorite, neurologists showed me my MRI's upon my asking.  Seeing the scans depressed me to such an extent that I pleaded with him to not show me any future scans, no matter how much I begged.  My outlook is very different now and I wish to be far more informed and knowledgeable about what is happening in my body, including seeing the scans of my brain (and/or spine).  The MS is not who I am so it no longer bothers me quite as much.. until I saw something a few weeks ago.

My friend Mike told me that the wife of a friend was diagnosed with MS and the way her neurologist had described MS was that she had "clouds" on her brain.  Hmm.  Clouds?  Really?  I guess that's an easy way to explain it when looking at an MRI but take a look at THIS and tell me if they still look like clouds!
The arrows are pointing at MS brain lesions.
When I first saw the above photograph, I literally cried.  It was the first time I literally saw what MS looked like and I wanted to vomit.  MS lesions are not clouds.  MS lesions are not little white marks on our MRI scans.  MS is FUCKING UGLY AS HELL AND IS EATING UP OUR BRAINS!!!  I think seeing this photo was also one of the first times, in recent years, when I felt completely helpless to this beast (MS) which lives within me.  It's taking bits of me away with each passing moment and all I can do is.. basically nothing. Yes, I'm on Tysabri and I still do my physical therapy exercises, go to my chiropractor and take whatever meds I need in order to make my life more tolerable.. but in the end, the MS will do as it chooses because it has more power than I do.  I do my best to keep a strong, positive attitude, but I can do nothing to eradicate the MS from my brain and that is as true as can be.

Will I allow this image to dictate how I live my life?  No, absolutely not.  Yet it has put a different spin on how I see the MS.  Not only do I know what it feels like to have MS, I now know what the bitch looks like when I'm cursing at it.  MS finally has a face so it deserves to be as ugly as it is.  Clouds are far too pretty to be associated with MS!  So I will take the knowledge I have gained and hold my head high and face it, as I always have, and smile in the face of adversity.  I am strong because I have no choice but to be strong.  Life goes on and will continue on.. and I intend to live it to the fullest.


  1. first your kittys are precious! I am glad I came across this blog.I have an appointment with a neurologist to check for ms. they suspect I have it. I hope to god that I don't, but if I do I will take it head on and fight. I currently have fibromyalgia, bells palsy, neuropathy in my feet, and sjogrens. you'll have to excuse my spelling i can't spell any more it's so frustrating. Thank you for sharing the raw pics of what it really looks like. like you I want the truth and don't sugar coat it. I can handle it.Best of luck to you...

  2. Oh that's what our lesions look like, they do look pretty and inoffensive on the MRI's don't they? Great post!

  3. Wow, this pic is pretty narly , my brain must look like it has a serious break out .

  4. I am at a loss for words. My husband suffers from this beast (DX 11 years) and I now want to cry.

    1. I know that MS is terribly overwhelming for both those of us with the illness as for our loved ones. I will admit that I have no way of confirming if the photo of the lesions is accurate or not, though I tried to find that information when I initially put up this post.

      Please, don't let this upset you too much. I let the MRI scans take over my thinking for a long time when I had first seen mine and the truth is that my scans are still ugly as can be, but I feel great. I'm at twenty-five years since diagnosis now and life is treating me well. Our disease is ugly. What it does to us can be ugly as well. The way we choose to deal with things is what shouldn't be quite as ugly. Chin up and look at the positive in life. I swear that's what I do! After all, life is truly grand.

    2. Many with lyme disease have lesions on their brain and it is often mis-diagnosed as MS.

  5. I too thought lesions looked like inoffensive little glowing spots until I found this picture on Pinterest. Now it make sense how ugly this disease really is.

  6. I have been fighting this for over 25 years- and I have never seen anything that looks like that picture. I have only seen the white spots on the MRI. I wish I never saw this. It just makes it worse, honestly. I almost threw up and started crying - My son has signs of it now- and my brother is in a nursing home with it- i fucking hate this disease- figures it would be hideous too

  7. Hi Lucy,

    We hope you’re well.

    After carrying out content research on brains in MS we came across your blog; ‘MS…Looking at the ugliness of our brain lesions, and still smiling’. We were amazed by your willingness to be more informed and knowledgeable about your brain and your body whilst living with MS; this must take real strength and courage!

    The reason we’re contacting you is to ask whether you’d like to collaborate with The World vs.MS (TWvsMS) by writing a blog similar to the one above, on your experience? When blogs are created by our community members, we published them on our website and across our social channels (Facebook, Twitter, and Instagram). If you’d like to see examples, please feel free to preview some of our more recent blogs here: If you’d like to get involved, please email us at: and we’ll be more than happy to provide you with more information. We'll look forward to hearing from you.

    Best wishes,
    The World vs.MS Team

  8. The article was probably very interesting but the print color with that background made it impossible to read