Life with MS & EDS

December 2, 2008

Diagnosis Basically Confirmed

Filed under: Uncategorized — by mseds @ 8:48 pm
Tags: , , , , ,

Well, the Neurology appointment was less eventful than I expected. He looked at my records and then we started chatting about my symptoms and history. It seems to be a good sign that my only symptom is the Optic Neuritis. I did all of the standard tests every neurologist I’ve ever seen does. This includes the standard drunkard tests (walk a straight line, touch your nose and then my finger, how many fingers do you see, etc.) He also tested my reflexes and that I almost kicked him seems to be a good thing. My strength seemed good, too, as I was able to keep him from pressing down my arms, legs, and feet. My vision was 20/20 in my left eye (I could read the tiniest print) and my right eye was only 20/40. That was pretty good.

I learned that the 1.7cm white matter is on the right side of my brain and that the other smaller ones are on the left. I asked if it mattered where the spots are located and apparently it doesn’t. None of them are near the optic nerve. I figured something would be near the nerve since that is where I keep having problems, but that isn’t the case. 

My husband (still not sure what to call him here, so I guess I’ll use his blog name, NothingKnew) came with and I’m very glad he did. It was good that we got to hear things at the same time and that we could both ask questions. The doctor said I could pick from my choice of 4 medications and he sent us home with an armful of materials from the companies. NothingKnew asked if I could switch medications after I’ve chosen one and apparently I can. We’ll go through the materials together and I imagine there’s a blog post or two to follow on them. I can’t wait to see how each one tries to win me over. Apparently there are no studies that pit one drug against the other. They’ve all be tested against placebos and none of the studies have exceeded 3 years. Three years seems to be the magical number beyond which it becomes unethical to keep someone on a placebo. 

My next steps are to get blood work done on the extremely off chance this is Lyme. I’ll schedule that tomorrow. I go back to the dr. next month to let him know which medication I want to use. He also recommended that I see a neurologist that specializes in MS since he’s only a generalist. He gave me the names of doctors at Jefferson and Penn. I chose the Penn practice and have an appointment there in MARCH! I guess it shouldn’t surprise me that they book that far out. 

Tips I picked up today:

  • Do moderate exercise, but stop at first sign of fatigue. Working through fatigue is good when you are healthy, but apparently a stupid thing to do when you have MS.
  • Get an MRI once a year.
  • The IV steroids only really help if started right away. If you want 6 weeks or so like I did and your symptoms have already plateau, it’s too late and there’s not evidence they are useful.
  • Waiting another month before starting treatment isn’t a problem, especially since I’ve already gone 7 years without medication.


  1. I got distracted reading this once I read 1.7cm white matter. Why? Because white matter in the brain is something we want lots of. It is the part of the brain which has the myelin that protects our nerves.

    Then I read your post “lesson learned” and now I understand that you mean lesions. My confusion is explained. BTW, my MRIs still have not shown any lesions on my optic nerves although I’ve been affected by optic neuritis at least three times.

    And, there have been studies comparing one disease-modifying drug with another. The studies were called REGARD and BEYOND. Read a little more about them here –

    And the IV steroids really do make a huge difference. I’m surprised that you didn’t do them the first time round with optic neuritis.

    I’ve got more thoughts but should leave them on the appropriate posts.

    Comment by Lisa Emrich — December 3, 2008 @ 11:21 pm

  2. Hi Ivy: I’m from Bucks County and my neuro is at JEFF. I’ve had MS for 32 years now and am doing ok. I don’t take any disease modifying drugs as a choice and instead treat with diet and supplements.

    If you want to talk and trade war stories, etc. I am available by email. Click on my name and it will pop up.


    Comment by Anne — December 4, 2008 @ 9:57 am

  3. Thanks Anne! It’s nice to “meet” someone nearby. I was torn between seeing someone at JEFF or going to Penn. I have an appointment scheduled with Penn for March. I’d love to hear about the supplements and diet changes that you’ve found helpful.

    Comment by mseds — December 4, 2008 @ 5:31 pm

  4. Hi Lisa,

    I’m not sure why I’ve never been given the IV steriods before. I passed on them this time just because it started over 6 weeks ago and this neuro didn’t think they’d do much to help at this point.

    It’s interesting that so many of us get optic neuritis yet nothing shows up on the optic nerve.

    Thanks for the link! I’ll definitely check it out.

    Comment by mseds — December 4, 2008 @ 5:33 pm

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