Life with MS & EDS

December 2, 2008

Lesson Learned

Filed under: Uncategorized — by mseds @ 9:50 am
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My optic neuritis arrived right on schedule this year. Fall arrived and the weather got cooler and my vision got cloudier. Thankfully it was still only in my right eye. I can’t even recall exactly when it started. I was crewing at the Breast Cancer 3-Day in Philly in mid-October and I think I started to notice it then. By mid-November, things were a bit different than in the past. I had pain behind my eye. I don’t recall that happening before. Here’s where keeping a journal would have been helpful. (Lesson #1 – keep a journal or start a blog sooner!)

So, I called my regular eye doctor. The last time I saw him was 2006 when this happened soon after we moved back to the Philly area. I didn’t get an MRI back then, although I’m not sure why. I thought that the 2001 and 2003 MRIs were clean (I’ll get to that later) and I guess it didn’t occur to me that this cloudy vision problem could be something more serious than a seasonal inconvenience.

Last year I was so busy finishing grad school that I didn’t even bother to go to the dr. I’m glad I decided it was finally time to get this checked out again.

I called the eye dr. on Monday, 11/17 and got squeezed in first thing the next day. Many eye drops later the dr. confirmed that my eye looked great and that it was the nerve that was the problem. If it wasn’t for the nerve problem, I’d have better than 20/20 vision! So, he asked me to get another brain MRI. I called the MRI place and they’d have taken me that day, except my eyes were too dilated to get there. So, Wed. morning, 11/18 I went off to get pictures of my brain. Wow I had forgotten just how loud those machines are! That night my husband got me a thing of Ben and Jerry’s and Frito’s and we waited. What’s better than Phish Food when stressing?!?

The doctor’s call came around 8 something Thursday morning, 11/20. He confirmed that I have “white matter” (which I’ve decided I much prefer to “brain lesions!”) in my brain and that it is almost definitely Multiple Sclerosis. I had done some research that week and learned that optic neuritis usually (but not always!) turns into MS within 7 years or so. It also tends to affect females more so than males and comes on between 20 and 40 years old, frequently after some kind of hormonal change (within 6 months after a pregnancy, for example!) or other major event. It tends to affect those in temperate climates with Northern European ancestry. There seems to be a genetic predisposition, but it’s something else that brings it on. There’s a belief that Vitamin D deficiency (lack of sun light) plays a role. Go figure that I try to avoid skin cancer and end up with an auto-immune disease!

So, the risk factors and my symptoms all point to MS. There doesn’t seem to be anything else that this could be. I called my family doctor that morning and, just like the others, he could fit me in that morning. It seems to be a sign of something serious when everyone is willing to see you right away! (Lesson #2 – the faster doctors are willing to see you, the more serious things are.) He recommended the name of a specialist. I’m seeing a neurologist today (that’s equivalent to a right-away date for neurology) to find out what to do next. We need to decide if I want to do IV steroids to clear the eye up faster (I’ve always declined this in the past) and I also need to find out what medication(s) they want me to take. Unfortunately they are all shots!

Friends Help

Talking to my husband’s friend down in MD who was diagnosed with MS around the time I was first dealing with optic neuritis helped calm me down and put things into perspective. The amazing brownies she sent me really helped, too! She even sees the same neuro I did. It sounds like I’ll have to give myself needles every day or week (depends what the dr. prescribes), but that they can significantly slow down the progression of MS and even reduce the white matter. That was encouraging. Although the thought of needles freaks me out, I’d take that over chemo any day.

Biggest Lesson(s) Learned

Over the past week I did manage to track down my 2003 MRIs (Maryland only keeps medical records for 5 years, not 7 like PA), so I have those for comparison. I think it’s neat to look at the brain images. The white matter is definitely visible on the new images. I have no medical training, so I don’t know exactly what I am looking at, but there are white spots on the new pictures that are not on the old ones. I was showing Big Sister the brain pictures without pointing out the spots. She wasn’t as interested in them as I was and thought it was kind of creepy to see what is inside of a person’s head.

The bad part about having received the old medical records is that I got to see the report for the first time. It clearly said I had MS and this was back in 2003. The report was very short and didn’t specifically mention where the white matter was, but it did say things were “unchanged from 2001”, so I likely had MS back then. I don’t ever recall my old neuro saying, “you have MS.” I remember the discussion completely focusing on the optic neuritis and that the brain MRI looked “fine.” I’m pretty angry that he didn’t clearly say, “come back after you’ve had your baby and we’ll chat again,” or something like that. I never would have waited 5 years to get another MRI! (Lesson #3 – always get copies of reports for yourself!) (Lesson #4 – if you have optic neuritis, get more frequent MRIs since there is a chance it could be caused by MS and the sooner you can treat MS the better!)

Not Telling the Girls

If you are ever around our girls, please don’t mention anything in front of them since we are not telling them it’s MS. Big Sister is high strung and too emotional to begin with and wouldn’t be able to handle it and Little Sister is too young. We’ll tell them when they are a bit more mature. I know that the MS Society has some great materials for kids, but they talk about gross and fine motor problems that I don’t have and we don’t want the girls to be concerned about things that may not happen for a long time. They know something is wrong with my right eye and that I’m seeing doctors for it and we’re leaving it at that.

What’s Next?

Between the Ehlers-Danlos diagnosis and now MS, I’m feeling genetically screwed! This has been a lot of info to take in during the course of less than 6 months – too much to really digest.

I hope to get decent news from the neurologist today. Thankfully there are much worse things to have in life than MS, so things generally look very promising.



  1. If you don’t mind sharing, what EXACTLY did that 2003 report say? Did it mention multiple sclerosis as a differential diagnosis? If so, that just means it’s one possibility which the doctor should consider. Radiologists can’t diagnose, but they can present the evidence. I’m just trying to make sense of it, as I’m sure you are.

    Comment by Lisa Emrich — December 3, 2008 @ 11:30 pm

  2. Thanks, Lisa! The MRI report compares it against the 2001 MRI, which I don’t have and can’t get. There seems to be enough info in this report to tell me what was in the other one. It says the MRI was basically unchanged with a “few punctate areas of increased intensity in the periventricular white matter on the long TR images and a single legion within the corpus callosum” (where ever those things are.) No new white matter was identified and no evidence of “mass effect” (not sure what that is either). This part sounded pretty good, right?

    The conclusion was:
    “Significant decrease in the amount of enhancement within the lesion adjacent to the right frontal horn” and “only a minimal amount of enhancement was present.” (Also sounds good!)

    “Otherwise the examination is stable with a few punctate areas of increased intensity in the periventricular and subcortical white matter including a single lesion within the corpus callosum. Again, presumably this represents multiple sclerosis but the orbits and optic nerves remain normal in appearance.”

    It’s that “again, presumable this represents multiple sclerosis” part that Dr. Katz never mentioned and last week was the first time I ever saw it.

    The current MRI report shows a whole lot more than this one did, so there’s certainly been a change over the past 5 years.

    Comment by mseds — December 4, 2008 @ 11:54 am

  3. Oh, I think I get it!!!

    First MRIs – there was a single enhancing lesion “adjacent to the right frontal horn”. The frontal horn supplies blood to the frontal lobe.

    A single lesion does not make MULTIPLE sclerosis.

    Second MRIs – corpus callosum is the white matter of the brain which connects the hemispheres allowing them to communicate. Punctate means very tiny, little spots. Again, only one (the same) lesion showing “only a minimal amount of enhancement.” Yes, good.

    Still not enough evidence to diagnose MS. The radiologist is going under the guidance that this is “presumably” MS.

    A different neurologist MIGHT have asked you to undergo a lumbar puncture and you did do the Evoked Potentials.

    Current MRIs – what was maybe, perhaps, Possible MS has finally developed into Definite MS.

    What Dr. Katz should have said to you is “this is not MS; there is only one enhancing lesion which doesn’t fulfill the diagnostic criteria for MS; we call this Clinically Isolated Syndrome (which definitely can be caused by response to a virus); certainly if you experience any further neurological events, we will take another look to see if this CIS has developed into MS; your risk of developing MS after a CIS is increased slightly for the next 5 years (according to studies); but until the next neurological event, if there is one, you do not have MS.”

    I believe that a lot of lobbying has been done to advocate for the use of one of the DMDs following CIS. But I think this might be after 2003 (?). I’m not sure; it would require some research on my part.

    So, the other foot has fallen. I’m so sorry, that really sucks!! It fell for me five years and two months after my CIS. Although, I think that I probably did have some neurological events which I didn’t recognize at the time between those years.

    Does that help, too?

    Comment by Lisa Emrich — December 5, 2008 @ 4:15 pm

  4. Thank you so much, Lisa! I greatly appreciate the explanation. I have a lot of vocabulary to learn. I do hope that they’ve made changes in how they deal with and monitor CIS. I wish he would have said to definitely have another MRI after I had my little one. I don’t think it was wrong to attribute the ON to the flu shot (which was either badly timed or triggered something already in progress,) but I wouldn’t have blown it off like I did if I knew there was something to be concerned about, even it if was only a possibility. There’s nothing I can do about it now, so no use kicking myself about it. I’m thankful you were able to help me understand what the results said back then. That helps put things in perspective!

    Comment by mseds — December 6, 2008 @ 11:00 am

  5. […] 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 […]

    Pingback by This is my brain… « Life with MS & EDS — December 18, 2008 @ 10:17 am

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