New to this - I know this is long but please read and help me any way you can.

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Stella Marie
Veteran Member

Date Joined May 2005
Total Posts : 601
   Posted 6/18/2007 11:03 PM (GMT -6)   

sad  I know this is long, but please take time to read this and respond.  This is all very new to me and I would like as much information as can before my first doctor appointment.


I am suffering from a rare neurodegenerative disease called Multiple System Atrophy.  This is where areas of your brain deteriorate at a rapid rate.  The biggest problem is the disruption of communication between muscles, nerves and the brain.  My muscles are constantly cramping up and having all kinds of uncontrolled movements.  I also suffer horrific neuropathic pain.  Because of all of this, I had an intrathecal medication pump implanted and a spinal cord stimulator for pain.  I have had the major portion of this disease for about three years now.  All of a sudden I have started having what I think are panic attacks.  There are times when my diaphragm actually does have spasms and I have to take Baclofen and anything I have to stop them.  At other times I start have this odd feeling of not being able to breathe and it lasts for some time.  I have no cardiac changes at the time – and they scare me half to death.  At my neurologist’s request, I have an appointment with a psychologist next week.  Please help me better understand all of this:   1) How is treated?  2)  Who is the best person to treat this?  3)  What can I expect?  The medications that I am currently taking are:  Sinemet (Parkinson’s medication), Requip (Parkinson’s), Cymbalta 60 mg (depression & pain), Lyrica 300 mg Pain.  Fentanyl Patch 75 mcg, Intrathecal Baclofen (muscle spasms) and Klonopin (myoclonus).  I do not know how you all handle this – these events are driving me to wits end.  It use to be just having them was horrible, but not I have gotten to the point when I am always afraid I am going to have one.  It is like this vicious loop and I have no idea how to break it.  Please take a few minutes to respond and help me out.   I feel like I have gotten to the point where I am living on hell here on earth.

Stella Marie

 Dx:  Rare rapidly progressing neurodegenerative disease called Multiple System Atrophy (brain rot, autonomic system failure, neuropathic pain and a whole lot more).  Added improvements:  Intrathecal pump, spinal cord stimulator, oxygen and a nice shiny power wheelchair with a horn and all the trimmings!  At this rate I could almost be bionic by Christnas.


Medications: Sinemet, Requip, Klonopin, Baclofen, Provigil, Lyrica, Cymbalta, Fentanyl patches, Dilaudid, Fentora/Actiq, Zofran

(The cost of these meds are unbelievable and could feed a starving nation for a month or longer!)

Words that soak into your ears are whispered...not yelled.  Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to God......


Veteran Member

Date Joined Sep 2006
Total Posts : 510
   Posted 6/18/2007 11:14 PM (GMT -6)   
Klonopin is also used to treat anxiety, how long have you been on it for? Suffering all that you have to face and depression it wouldn't surprise me if anxiety came along for the ride.

Hopefully someone with more knowledge will come on soon to help you.

Veteran Member

Date Joined Sep 2006
Total Posts : 752
   Posted 6/19/2007 2:04 AM (GMT -6)   

Hi Stella Marie..Wow, you are one of the bravest people I have met here..I don't have medical knowledge of your many conditions - but I too wonder if when you mention "not being able to breathe" etc. if this is indeed anxiety - have you mentioned this possibility to your doctor?

Keep posting.




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Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 6/20/2007 5:26 AM (GMT -6)   
Hi there
You sure have your plate full hun and I want you to know that we are going to be here for you thru all of this okay

Keep posting and do ask the doc why you are on Klonopin as it is used for a/p pehaps it is for all the other diseases you are having to deal with not sure

STAY with us plz

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