Life with MS & EDS

March 6, 2009

Seriously, this could still be something else?

Yesterday I finally got to see my new specialist!  She was great!  I am very glad that I found someone who knows more about MS than my general neuro.  She suggested that I’d be happier if I kept Dr. Generalist as my primary since he’s certainly easier to get in touch with for prescriptions, appointments, and things like that, but that I see her a couple times a year.

Then I started chatting with Dr. Specialist.  She asked why I was there.  I thought that was funny.  I told her I was diagnosed with MS back in November.  She asked about my symptoms, which so far only include optic neuritis and fatigue.  We talked about my first instance of optic neuritis after that flu shot in 2001 after Big Sister was born and about how it was in both eyes that year and that it’s only been in my right eye since.  I really cannot remember when my vision gets back to normal each time, but I imagine it takes several months and then I eventually notice the ON is back every October.  We also talked about the rest of my medical history, including the Ehlers-Danlos Syndrome.  She didn’t know much about EDS, but is going to do some research on that and see if there is anything I need to know about having both of these lovely things.

After talking, she took a look at my MRI images from 2003 and the CD-ROM from the MRI in November.  This was the first time I got someone to really explain the images.  She said that there were multiple lesions on the 2003 MRI!  She pointed out to me how the black part in the middle should look all black, but how that wasn’t the case in my images.  She explained what was different on the 2008 scan.  It showed a newer active lesion on the right part of the brain.  She looked for traces of it in the 2003 scan and said there may have been some minor bit, but she couldn’t get a good enough view from the images that were available.

Brain MRI Image showing white matter in the center

Brain MRI Image showing white matter in the center

After talking about the MRI images, Dr. Specialist did her exam.  I always have fun during neurology appointments.  The first thing we did was to go out into the hallway.  I got to walk back and forth, walk toe to heal in a straight line, hop on each foot (that was a new one), walk on my toes, and walk on my heals.  Then it was back into the room for more fun activities.  I got to do the other drunkard tests – touch my nose, then her finger, touch my nose which she moves her finger, touch her finger, etc. as well as the “how many fingers am I holding up” test.  I was able to easily read the bottom line of the eye chart card with my left eye and it wasn’t completely clear with my right, but I got a lot of them!  That was pretty good in my book and is an improvement from November!  She asked me to cover one eye and look at the red stitching on her lab coat (it’s smart of them to use red stitching for their names.)  It was a duller red than it was with my left eye.  It was like someone put a tint over it.

She also checked my resistance.  She had me put my arms out and she pushed to see how well I could resist.  She did the same things for my legs.  She used the neat hammer thing to check reflexes and sensation.  I was able to feel everything and apologized for almost kicking her when she ran the thing up the bottom of my foot.  She also kept flicking the top of my middle fingers, but I have no idea why!  I should have asked about that one.

I passed all of the fun tests with the exception of the red being dull and my optic nerve looking pale, so I guess it wasn’t quite passing with flying colors.  We talked a bit more after that.  I asked if it was unusual to only have optic neuritis and no other symptoms after 7 years with no treatment.  Her response seemed to indicate that it wasn’t completely out of the relm of typical, but it didn’t seem common.  Perhaps I am just fortunate.  But, given that optic neuritis is my only symptom, she wanted to do some blood tests to see what’s going on.  She also wants another brain MRI on a better machine to see if she can get better information on what is going on in my brain.  I’ve never had a spine MRI, so she ordered that, too.  I’ll get those done in a couple of weeks.

Before I left the hospital, I had to go to the outpatient lab.  I scribbled down what they were testing for:

B12

Folate

Complete Metabolic Panel

Thyroid Stimulating Hormone

Blood Count w/ Diff

Anti-Nuclear Antibody

Sed Rate

AntiSSS, AntiSSB

Angiotension Converting Enzyme

Rheumatoid Factor

Lyme (they already tested for this, but she wanted it checked again)

NMO IgG

This took 8 vials of blood!!!  That’s more than I’ve ever had taken at one time.  I’m known to pass out or at least black out while having blood taken, so I warned them ahead of time.  They gladly gave me some water and OJ, which was really nice of them.  Thank goodness the nurse was quick and was good at small-talk.

I thought the NMO IgG one was interesting.  She told me not to Google it, but of course I did anyway.  That one gets sent out to the Mayo Clinic for analysis.  It tests for Neuromyelitis Optical (NMO) which is also called Devic’s Disease. This disease also affects the myelin.  It can lead to a loss of myelin and can also damage nerve fibers and surrounding tissue.  While in the past it was thought to be a severe variation of MS, it is now known to be a separate disease.  In addition to causing optic neuritis, it can also lead to paralysis of arms and legs, cause sensory disturbances, and lead to bladder and bowel control issues.  Again, I don’t have any of the sensory problems and no bowel or bladder problems.  So, I have a feeling it’s not this.  Has anyone else been tested for NMO IgG?

I go to see Dr. Specialist again next month to see what she’s learned based on all of these tests.  I love seeing the brain images, so I can’t wait to see what the ones look like on the better machine.  What I’m not looking forward to seeing is the co-pay bill for all of this!  I bet I wipe out the healthcare FSA by June at this rate.  At least I’m lucky enough to have one of those.

In the meantime, she said to keep on the Copaxone.  She said I can take thighs out of the rotation and do other areas more frequently, but that makes me nervous.  I’m going to call her nurse for more ideas.  She also said I can do the upper part of my tush, as long as it’s not a part I sit on.  That was good to know.

I’m very happy that I found this dr.  My husband and I both really liked her.

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7 Comments »

  1. What a great visit!! I’ve been tested for NMO, but was negative.

    In 2005, lesions were found in the C-spine and the neurologist said Transverse Myelitis. But in 2000, my case of Optic Neuritis completely took away all vision in my right eye (starting with the color red) for 2 months. So Devic’s was considered, although the events of TM and ON usually happen within a small time frame. After more lesions showed up in the C-spine, I finally got the MS diagnosis. (also, the color red and intensity of light are still a bit duller for me)

    That’s wonderful that your neurologist took the time to discuss the MRI images and wants to make sure that you are diagnosed correctly. Awesome. If she does think that it’s NMO after viewing the C-spine films, then I know somebody who received that diagnosis last summer. You guys could talk.

    Comment by Lisa Emrich — March 6, 2009 @ 6:59 pm

  2. Perhaps this isn’t anything you could help with, but I am 28 and have been experiencing neuro symptoms along with other symptoms for several months. I am generally a assertive person, but I keep feeling that because of the kind of insurance I have, that I am not being evaluated as thoroughly as I could be. I have had only a few tests so far, so I can’t say any diagnosis has been missed and I have more scheduled, but the gross examination done upon first meeting the doctor wasn’t anywhere close to what you described. Do you have any suggestions on how to go about suggesting or requesting tests or information?
    Thanks!

    Comment by Samantha R. — June 3, 2009 @ 9:27 pm

  3. Hi Samantha! Sorry to hear you are having neurological symptoms. If I could do one thing differently from when I started meeting with doctors about my symptoms, it would be to demand a spine MRI in addition to the brain MRI they did. I had a brain MRI in 2001. It was expensive even with my good health insurance. It didn’t show enough lesions to be called MS, so I didn’t think anything of it. I guarantee, knowing what I know now, that there was already sign of damage on my spine back then and I would have gotten treatment 8 years soon. I try not to be bitter about that, but it’s hard to let go of things like that. I wasn’t educated enough to ask about that then, and I try not to beat myself up for that. That song, “I wish that I knew what I know now…” is now stuck in my head!

    I guess the first thing to do is to find a doctor you really like. Hopefully you have some choices in who you see. I’ve seen about 3 neurologists in my life, starting back in high school (I was passing out and they didn’t know why) and my daughter has seen 2 (when trying to diagnose her developmental delay.) All of the exams we’ve had have been pretty similar to this one (although the amount of blood work was something very different!) Doing your homework before you go helps, too. I like going in with questions to ask and it makes me feel like I can challenge things better if I don’t like what I’m hearing.

    As far as tests go, blood work to rule out other things seemed helpful and definitely the brain AND spine MRI!

    I wish I had better advice to offer! Good luck! Please let me know how things go.

    Comment by mseds — June 3, 2009 @ 9:49 pm

  4. Hi Erin (?)

    I did a google search on ‘white spots on a brain mri’ and one of the results it pulled up was your blog.
    Your MRI looks like mine. Is the white spot on the back of your brain the MS?????
    I have Chiari malformation (have had two surgeries – fisxing to have another one for that and for…) and have spinal cord damage at C2. But my NL isnt even looking at my MRI cause of the C2 damage he is letting my NSG deal with everything.
    So i am doing my own research…and then presenting him with it…and it is sad cause he is an NL that specializes in MS and his first thoughts are that I have MS.

    thanks for your reply!!!
    have a blessed day –
    Terry Lynne

    Comment by Terry Lynne — June 27, 2010 @ 12:32 pm

  5. Sorry for taking so long to get back to you, Terry! I really wish I knew how to read MRIs. All of the drug companies offer lunches and dinners about symptoms and their drugs. I wish one would sponsor a walk through of an MRI, even at a very basic level.

    I made a giant mistake in not doing more of my own research back in 2001 when I first had symptoms. My neuro only checked my brain and said I didn’t have MS, even though there was more than one lesion (I didn’t have the lab report until 2008 to know this.) I’d absolutely demand a spine MRI. I lost almost a decade of treatment since my diagnosis was so delayed. It’s worth the money, if nothing more than for peace of mind.

    I’m constantly amazed at how much research we have to do on our own when they are the doctors who apparently specialize in the field. It’s crazy!

    Good luck and please let me know what happens!
    Ivy

    Comment by mseds — July 7, 2010 @ 6:00 am

  6. I was looking up NMO and found your blog. I was diagnosed with MS about 2 years ago but now that more lesions have showed up on my c-spine the dr wants to test for NMO. I am terrified of what the results may say and am praying for a miracle cure.

    Comment by preciouskissessara — December 25, 2012 @ 5:16 pm

  7. Hi! My main symptoms are optic neuritis, toe cramps, and fatigue. My C spine is a terrible mess. That’s where most of my lesions are. I read the symptoms of NMO again and they are so similar to MS. I’m not sure how they ruled that out for me. I guess that special blood test said it wasn’t NMO. Have you been trying any medications or treatments since your MS diagnosis? Hang in there and keep hoping. Mind over matter is so important.

    Comment by mseds — December 25, 2012 @ 10:48 pm


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