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photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/2/2006 4:32 AM (GMT -6)   
Hi everyone,
 
Well I saw the neurologist on Tuesday and she thinks the return of my symptoms is because I'm working too much.  She told me to take a week off, and maybe cut back my hours at work (30 hours at the moment).  Not what I wanted to hear because work is my sanity right now, but I will listen.  My right arm just isn't getting a chance to get better because it's in use working the mouse my whole shift.  Figures that the one limb I really need to do my job is being difficult! argh
 
I also asked her about Low Dose Naltrexone, she didn't get too excited about it.  When I asked her about Tysabri however, she thought it looks very promising, but she said she is somewhat conservative and would wait a while to see how other people are managing on it first, another 6 months at least.  She also mentioned the cost is about $40,000 Canadian a year! 
 
The other thing I wanted to know was about the chances of waking up paralyzed in a limb, not able to talk or some other horribly scary debilitating symptom.  I was kind of expecting her to say that is very rare, but she did not.  She just said, "it does happen and it could, but it is hopefully only temporary".  ACK!!!  That was a real wake up call for me to take this seriously and listen to my body more. 
 
Shar 
 
 
 
 
 
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/2/2006 5:44 AM (GMT -6)   
Yeah, waking up with one (or more) of those really scary symptoms can be...uh...scary for sure. What's that expression..."...been there, done that!"...
 
While that really is a scary notion to contemplate, I'm glad your doctor didn't brush off your question, and answered it honestly and straightforwardly.  Those things can happen...and they generally will improve, over time.
 
All the meds for this darned disease are expensive.  I don't know about the cost of Tysabri here in the US, but it wouldn't surprise me if it indeed was that around here, too.  I'm SO glad the drug companies are making money off us.. (note sarcasm in that last sentence!..)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/2/2006 1:36 PM (GMT -6)   
Hey Shar

Geez, what a scary thing to hear!! I know u were shocked, but as Uppity said, it's good the doc was straightforward with u. I'd much rather know the worst possible situation for myself than to find out alone later on and i'm sure that's the same with u.

I've seen only a few things about Tysabri and that was since it's been re-released. The one figure i saw was about $3,000 US dollars per month. OHMYGOSH!!!! HUGELY expensive!! Yep, they're making plenty of money on the sick folks of this world! Hey, we could wait for what everyone else seems to be waiting for...walmart to come out with their version for $4 a script! ;) Yeah, yeah...just wishful thinking.

Take really good care of u'rself and REST now that u'r hours are cut back. Use the time for u'rself and feel better.

rhonda

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/5/2006 6:51 PM (GMT -6)   
Hi guys,
 
Thanks for your responses.  I have been resting/cleaning this week and am feeling a bit more in control, mentally.
 
I meant to ask the neuro this question.. maybe you guys can help.  If the lesions are in my brain or spine, then how does resting my arm help it? I can't seem to make the connection there about how my arm is actually affected, if that makes sense...  I know it's numb, tight, and uncoordinated but if those sensations are all caused by a lesion, then it can only get better when the lesion settles down, no?  I know when I overuse my arm it gets achy, that must come from the arm itself.. which leaves me more confused about how it's connected to the lesion(s).  Sorry this sounds so confusing.....I guess it boils down to me wanting to know if continuing to use my arm at work so much is adding to it's problems, or if they'd be there anyway...  eyes
 
Thanks!
 
Shar
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/5/2006 7:05 PM (GMT -6)   
photogirl1358 said...
Hi guys,
 
Thanks for your responses.  I have been resting/cleaning this week and am feeling a bit more in control, mentally.
 
I meant to ask the neuro this question.. maybe you guys can help.  If the lesions are in my brain or spine, then how does resting my arm help it? I can't seem to make the connection there about how my arm is actually affected, if that makes sense...  I know it's numb, tight, and uncoordinated but if those sensations are all caused by a lesion, then it can only get better when the lesion settles down, no?  I know when I overuse my arm it gets achy, that must come from the arm itself.. which leaves me more confused about how it's connected to the lesion(s).  Sorry this sounds so confusing.....I guess it boils down to me wanting to know if continuing to use my arm at work so much is adding to it's problems, or if they'd be there anyway...  eyes
 
Thanks!
 
Shar

The lesions are indeed in your brain. And apparently they are in an area of your brain that affects the neurological signals..nerve signals..that go to your arm, and say "arm, it's time to move!"  If the signal is blocked from one path, it will try to take another path. 
Think about it this way: you're driving along in your car and suddenly you come upon orange barrels -- and you have to detour.  The road you were on is smooth...but the detour is rough and you bounce all over the place.
The nerves are like that - -they'll follow their standard route, but then if there is a blockage -- the myelin is destroyed because of the lesion -- they'll go around, but the path is rough and the signal is weak by the time it gets to the arm. So the arm is weak, numb, uncoordinated, all that. The muscles are trying to "read" the signal from the brain, but it's not getting through properly, so the arm is weak.
Sometimes, early on, the lesion will repair. The myelin will regrow. And the signal will be strong again (and so will the arm.)  But if the lesion is large enough, it wont repair, won't regrow, so the arm will always be weak, or at least affected by the destroyed myelin.
Will it further be damaged by using it? No.  You'll just have to learn to cope with the weakness, and work around it. But using it as best you can won't harm it, or make your MS worse, or create new lesions, or any of that.
 

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/6/2006 12:06 AM (GMT -6)   
Hi Uppity,
 
Thank you so very much for the explanation! 
 
So i guess my neuro told me to take the week off to rest my whole self, not my arm.  I notice since I've been back at work my arm isn't as good as it was when I returned to work.  I take it then, that it's probably because my whole body is probably worn down a bit, it's not because I've been using my arm more. 
 
My work is not physically demanding, but I guess it is mentally which is just as tiresome.  POOP.  (unhappily cutting back my work hours)  nono
 
Oh one other thing, you've been on Betaseron a long time... I sure notice I'm warmer than before, which makes me sweat more, and I have to shower more.  That stinks!  literally... LOL
 
Thanks again!!
 
Shar
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron

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