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.
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......