Wednesday, August 18, 2010

Got Nothin' Up Top...Still

Yesterday, I had a neuro appointment.  This was a follow-up from an appointment I had two weeks ago, during which time we discussed some symptoms I had been experiencing this summer.

I also told her about the week or so of new bowel issues in the spring and the two weeks in June when my left forearm felt like it was on fire and the slightest touch made me jump and recoil.  Previously this arm had simply been very numb (still is).  I wondered if I weren't feeling the effects of nerve repair, or more likely two nerves just sending cross signals.

She put me through all the normal neurological silly human tricks.  My balance was obviously more off than it had been previously.  I was more numb than before.  My hip muscles were weaker than usual. face was becoming annoyingly numb.

I reported how I had felt really good MS-wise when I got a bonus dose of steroids with the Rituxan infusions.  Feeling that I had too many little things going on, she scheduled me for one day of solumedrol the same day as my appointment.  Basically just to see if I got a boost or any relief from the boost.  We also talked about doing some pulse steroids.

But first, I had to get a baseline bone density scan.  The following week was a new MRI scan.  I was curious and nervous to see if lesions had started growing amok since I stopped Copaxone last fall.  I also wanted to see if there had been any improvement since I started Rituxan. 

The results.  My bones are rather dense.  My scores are 1 and 1.5 standard deviations from the norm of a 30-year old healthy woman.  That's really good.  So I'm going to do another 1-day of steroids at the beginning of September.  We'll see if it makes a difference in how things are going.

The radiologist's report couldn't have been more boring or less exciting.  In fact, I think he must have been bored while studying my brain.  Absolutely nothing to see there.  I'm all clear up top.  I still do not have any brain lesions.  Whoohoo!

The one nasty cervical spine lesion which seems to cause me all the grief is still there, but didn't seem to have grown any.  In fact a smaller neighboring lesion which was seen in my neck back in 2008 was apparently no longer there.  Improvement!!

Like I said previously, I'm feeling pretty good.  My symptoms have flared up randomly during the past six months, often lasting for a week or more.  But the severity hasn't been anything to get excited about, meaning nothing to warrant a call to the office to get steroids.  If we call those mini relapses, and if this is representative of what my relapses will be like (having not much bite), I'm almost venturing to say that the Rituxan experiment is working for me.

During yesterday's appointment, I had improved in several of the neuro tests.  I actually completed the heel-toe walk without landing on the table.  I wobbled for sure but managed to save it and hold on.  Two weeks ago, legs lost position and I did practically land on the table.  Two weeks ago, my face was really acting up and I was very much fatigued.  Basically, I was in a mini relapse which has resolved now.  Whether it was the steroids or simply time that "fixed it" - who cares.

My hip muscles are still very weak (which would account for the difficulty I have walking sometimes).  My arms are still very numb, like completely boring with the pin-prick test, like please make me go ouch or I'm going to yawn here.  LOL.  My legs are only numb up to the knees now.  More improvement.

Basically all good news.  Now I need to give myself permission to feel good about it all.  Sure, I'll do the pulse steroids (if I want) over the next five months.  It's really up to me and how I feel.  Right now I think that I'll decide to feel good.  How's that?


  1. So glad to hear that your current treatment is working for you, Lisa.
    Lazy Julie

  2. Thanks Julie!

    I was nervous of what the MRI might show, but pleasantly surprised. Nothing like getting confirmation that you have every right to think you're feeling pretty good. LOL.

    Hope you are enjoying the end of summer. :)

  3. Great news. I took LOTS of IV roids and bones always good--I think it is genetic.

  4. All in all, it sounds like a pretty good appointment. Pulse steroids sounds like a good plan.

    So, your arms are numb - what about your hands? And does it affect you ability to play ...anything?

  5. Sounds like it was a good appointment. You seem to do well on steroids. I don't... they make me crazee. Most peeps seem to like them. I run!

    I'm glad they work for you. =)

  6. Diane,

    I think you might be right about the genetics. My mom has very strong bones which she attributes to my granddad being a milk man during part of her youth. Me....I don't like milk so didn't gobble it down like many kids.

    I also have really good teeth. Very fortunate.

  7. Webster,

    The numbness in my arms travels along the outer/upper side, then over my wrist and down my 3 outer fingers. My thumb and index fingers are not numb.

    Some of my fingertips are dulled and the piano keys do not "feel" like they used to, especially for the fingers on my left hand. And my muscle memory and strength are affected in my left hand. I have to look at my hand too much and it is sloppy.

    But my left hand/arm is the one which MS attacked very strongly at the beginning. It was useless for quite awhile and I did 3 months of PT/OT to rebuild the nerve message pathways. And the same 3rd-4th fingers on my left hand are the ones which RA caused to blow up to twice their size at one point.

    I just get kinda silly when my NP is poking me with the safety pin. "Come on, go ahead and press harder. Make me go ouch," I say. "Well I don't want to draw blood," she says. So it's kinda humorous.

  8. Sherry,

    I am able to tolerate IVSM. Oral prednisone is nasty and we don't get along AT ALL!! I have had mild hallucinations on that one. I have to use decadron if my need oral steroids.

    Previously we had only ever done 5-days steroids (except for last summer when we repeated IVSM and only did 3-days the 2nd time). Going for just one day was kinda nice. I didn't have all the usual side-effects which come from multiple days.

  9. all really great news Lisa!!! Sometimes I think boring is absolutely best....well at least when it comes to mri pix. I have my next one scheduled for this evening...hoping mine is as uninteresting as yours.