Finally.... A Plan!

I finally got through to my neurologist!

We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options.  He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time.  I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.

Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no.  It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further.  While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:

His name is Dufresne, and I painted him on Sunday.  So I haven't completely lost my ability to make good art, and that's comforting.  It definitely wasn't the same, and painting on the black background certainly made it easier.  I'll have to re-teach myself to paint on light.  Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it.  I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours.  I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!

Well, here's hoping that I won't have any active lesions when we take a look in April/May.  Fingers crossed!
Love, MSloan

Sensational

The weirdest part of this latest flare up is the lasting sensations.

In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling.  For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates.  Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet.  Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.

It is possible that this is my baseline.  What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack.  Now I will compare future symptoms to what I am currently experiencing.  But, this could be much worse.  On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect.  Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot.  I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.

The last few days have been spent at a conference for my profession.  I planned to attend a long time ago; I am presenting a research poster.  The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down.  This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.

I talked to my coworker who also has MS and asked her when she was diagnosed.  There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist.  Her sensory absence was so bad that she would accidentally burn herself.  Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI.  I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.

What kind of lasting sensations do you have at your baseline?  Have you eventually gotten used to them, or does it still bother you?

Margo