Scared of losing my dominant hand

[Zacksmomi]

It is so wierd.  In Dec '08 I woke up one morning but my right thumb and forefinger did not. Over the next couple of days the sleeping fingers became hand then arm.  I was dx'd with pinched nerve/ thoracic outlet syndrome and sent to PT.  My arm ended up almost paralyzed and the entire time I was not concerned about permanent damage.  IDK why, I just never panicked.

After about 6 weeks the feeling started coming back and within 2 months I had 99% of my feeling back.  The tip of my index finger never came back to life.  All of this did lead to my dx of MS. Even then I did not panic about what I heard.

For the past 6 weeks the numbness has been spreading in my hand.  Some mornings I wake up and just the tippy top of my index finger is numb, but as I go through the day my entire hand goes numb and even up into my wrist.  My thumb and index finger are pretty much numb all the time now and I am finding it impossible to do buttons and tie shoes.  Just now I couldn't take the lid off a tuperware and gave up on doing dishes.

I guess I am scared because when this happened last time, it took my arm quickly.  This time I can't tell if it is a flare or a permanent, daily, live with it problem.  It has been going on for a while now.  I did have a sinus infection over the summer which I think did start a flare.  I saw the MS specialist and she chose to simply go forward with Tysabri treatments and skip solumedrol for now.  

Since May of '09 I have had four 5 day treatments of solumed with the last one in June '10.  I don't want anymore.  I just don't know what to do.  Am I risking permanent damage to my hand by not asking for steroids?  Is the fact that the numbness goes away sometimes mean this is not from a flare, but already is a permanent thing I have to deal with?

It just seems like things are going downhill way too fast and I can't find the brake pedal.

Thanks for any insight
D

[jensequitur]

Hey, nothing's permanent when it comes to the human body.  Serious nerve damage does take a while to heal, it's true.  It can be as much as seven years.  But if there's an actual connection to the CNS, and blood flow going to the area of tissue that's damaged, then you're going to see some improvement.  Where we MSers get in trouble is when the damage is accruing faster than our ability to heal.

[Zacksmomi]

Thanks so much everyone.  I know we all get frustrated with this DisEase lots of times and it is so nice to be able to come here and get reassurance that my worries are not always necessary.  
I am getting Tysabri treatment number 3 on Oct 7 so hopefully these flares will settle down soon.  

I am going to go around the house and open everything I might need for the day in the morning before my hand goes numb lol!!

[doublevision1]

I don't think you are risking permanent damage by not asking for steroids at this time.  Steroids only speed the rate of recovery, not the degree of recovery.  It's possible that what you're currently experiencing is due to acute inflammation brought on by a flare up, and will remit when the inflammation is over.  My neuro gave me a rough guideline that if you still have residual damage from a flare a year later, it's most likely permanent.  I have no idea how valid this statement is.  I will say that my double vision ended up improving probably to 95% of normal function, and it improved excruciatingly slowly over a year or so.  

It seems in your case that it is still too early to know if what you're experiencing will be permanent or not.  The frustrating thing of course, is that there isn't much you can do that will make a difference, it will be what it will be.  Steroids might speed things up to where you will eventually be, though given you had them so recently I understand your reluctance, and they are apparently less effective the more often they are used - again, this is according to my neuro, and also an ER doc who administered them to me on one occasion.

I have similar concerns with my left hand, and in my case, I believe it's permanent as it's never improved since it first developed in 2008, despite most of my other symptoms remitting.  I have often worried about how I will function if this spread to my right dominant hand.  So far it's just affecting the tips of 3 fingers on the right side.  I really empathize with you and what you're going through.  You use your hands for just about every task of daily living, and it's hard to imagine trying to function without them, esp your dominant hand.  But try not to worry, again, it's pretty early to be worrying about permanent damage.  In the meantime, you might find some OT useful for some adaptations and coping mechanisms that will help in the short term.

[jensequitur]

Steroids don't fix things, they just reduce inflammation from a flare, so that you'll get over a flare sooner.  The damage is still there.  :-(

However, I would just wait and see what happens.  I've had my right hand go away and come back several times.  Right now the thumb is numb, and the tips of my fingers.  

I do find it extremely irritating not to be able to open things.  Shampoo bottles, the top of a bottle of Coke, pickle jars, etc.  And when I'm having trouble I'm always dropping stuff.

[figuerpa]

D,

I am sorry for what you are going through. I started yesterday with my face going numb and then my hand. I wasn't going to call my neuro and just wait it out but when my hand started going numb I thought I better call.

He prescribed me some steroids, which I have had in the past and now my hand is just tingly, face is still numb and parts of my leg are numb again. I was going to wait it out but when it hit my hand I panicked because I can't live without my hands so I called.

I will do the oral steroids and see where it takes me from there. If it doesn't get better I will call him again and see if I can get in to see him. It is a personal choice to take the steroids, but for me I would rather try it than not do anything.


I hope you feel better soon,
Paula