Life with MS & EDS

May 18, 2009

Did Not Expect This

Filed under: Uncategorized — by mseds @ 4:13 pm
Tags: , , , , , ,

Well, it looks like I’ll be seeing Dr. Specialist sooner than my October visit.  I called to talk with her nurse on Friday to ask about my latest symptoms.  My left arm from the elbow down is still getting pins-and-needles and that same sensation that was happening on my upper lip, left side, is now spreading across the lip and to the bottom lip.

The nurse returned my call on her drive home Friday night and said that she’d tell Dr. Specialist about the symptoms and that they’d look at my MRI results again on Monday morning.  I said that other than not feeling quite as fatigued, I’ve not noticed any improvement from the steroid treatment, which I finished on May 5th.  She said that it was probably still working in my body, which I thought was strange until my husband reminded me that antibiotics keep working well after you’ve swallowed the last pill, too.  Duh, that makes sense.

So, the nurse called back this afternoon and said that Dr. Specialist wants to see me and that they are fitting me in Wed. morning.  She didn’t elaborate and I didn’t ask, but I have a feeling Dr. Specialist wants to change my medication.  I’ve gotten used to Copaxone.  The shots don’t itch like they used to (except sometimes on the tummy.)  They still sting afterwards, but I’ve gotten kind of used to it and the ice does help.  I’m not sure what I think about switching, but if this drug isn’t working, then I suppose I need to try something else.  I’m not thrilled about changing to something that can cause liver damage.  My mom was just diagnosed with adult-onset Still’s Disease, which is an arthritis disease that causes liver problems, and several other family members have had liver disease, including my aunt.  This is going to be a big part of my conversation with Dr. Specialist on Wednesday.  In the meantime, I need to read up on the other drugs again.  I’m glad I wrote down what I thought of them back in December when I was doing my initial research.  It’s helpful to have something to look back on. I have a feeling she’s leaning towards Rebif based on my last conversation with her.

I’ll let you know what happens on Wednesday!



  1. Best of luck!! We’ll be thinking about you!!!!

    Comment by Posey — May 18, 2009 @ 8:10 pm

  2. I know hwat you’re feeling with the pins and needles. My right hand and arm has had pins, needles and some numbness since last july. I guess I just learned to deal with it, although some days it’s more intense and bothersome. I also get the numbness on my face, usually right side that covers my forehead, cheek, lips and chin. It usually goes away in a day or two though.

    Good luck with the specialist today!

    Comment by Erin — May 20, 2009 @ 8:43 am

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