NeuroNixed Craig: Day by Day
It's been several months since I checked in on you guys and find many have improved, more have not and some are brand new. So it goes in life especially the chronically ill, diagnosed and undiagnosed.
The best news I can provide you is I survived to attend and participate in my son's wedding on June 2nd. Many photos are located in my personal blog and on my Facebook page, should you be interested. Of course I maintained my professional decorum to present an honest impression when meeting the bride's family. OK! That lasted about 20 minutes then the partying began for the next four days.
I have progressed to the point I no longer see nor need to see any specialists. They all say there is nothing more they can do for me so my PCP handles all treatments of symptoms. I did rupture my left bicep, requiring surgery and luckily I felt no pain during the event. The first week post surgery the pain was excruciating requiring Morphine to control. By the first post op follow up I was back to 90% requiring no PT. The Ortho was amazed saying most people require a year to fully recover. I am now totally healed and 100% pre-op recovered.
I've been allowed the advantage of access to life insurance funds without the penalty of personal death. I decided I wanted to go on another Princess cruise to the Southern Caribbean in February. Seven nights to Aruba from Ft. Lauderdale with 3 days at sea. My PCP "medically" could not give his OK, however, as a person with great interest in my well being said, "Awe screw it, I'll sign whatever you need so go and have a great time." He believes, "doctors prescribe, God decides" and treats the whole person, not just medically.
Finally, I have progressed to having what I call mini-comas. They come like a train wreck out of the blue, I'll have to crash and will be totally out for up to 28 hours straight. No trips to the bathroom, missing all of my med times, just unconscious in bed. My wife constantly checks to insure I'm breathing. The seem to be coming every 36 to 48 hours now and range from 6 to the 28 hours above. My doctor simply says it's part of the progression and nothing he can do for me.
So, that's about it to this point with each day its own unique battle with the rules changing each day. Our motto, "Just go with the flow and pray God keeps me afloat." May Peace and healing health be with you and your family.
SIDE NOTE: Please allow me to let everyone know how I got here. Back from 2000 to 2004 I was misdiagnosed with RRMS and SPMS. Then undiagnosed to the proverbial, "we have no idea what's wrong with you but it's not MS" category.
Then they believed I had hereditary spastic paraplegia, which lasted about a year and-a-half, followed by a "No, we don't think you have that either." In the meantime I experienced and unrelated near fatal brain stem stroke requiring the med TPA or the "clot buster drug" to keep me alive.
It wasn't until 2009, I believe, I saw a neurodiagnostic specialist who diagnosed me with the following: 1) Spinocerebellar Ataxia and Atrophy; 2) Cerebellar Degenerative disease with Ataxia. Bottom line, the symptoms are very aggressive, progressive with no cure or treatment and a terminal prognosis.
All of this begs the question why am I here? Because of my long history of association and the strong similarity in my symptoms and those of MS to the point I don't fit into any other category.
I hope that provides more accurate information for a better understanding.
The best news I can provide you is I survived to attend and participate in my son's wedding on June 2nd. Many photos are located in my personal blog and on my Facebook page, should you be interested. Of course I maintained my professional decorum to present an honest impression when meeting the bride's family. OK! That lasted about 20 minutes then the partying began for the next four days.
I have progressed to the point I no longer see nor need to see any specialists. They all say there is nothing more they can do for me so my PCP handles all treatments of symptoms. I did rupture my left bicep, requiring surgery and luckily I felt no pain during the event. The first week post surgery the pain was excruciating requiring Morphine to control. By the first post op follow up I was back to 90% requiring no PT. The Ortho was amazed saying most people require a year to fully recover. I am now totally healed and 100% pre-op recovered.
I've been allowed the advantage of access to life insurance funds without the penalty of personal death. I decided I wanted to go on another Princess cruise to the Southern Caribbean in February. Seven nights to Aruba from Ft. Lauderdale with 3 days at sea. My PCP "medically" could not give his OK, however, as a person with great interest in my well being said, "Awe screw it, I'll sign whatever you need so go and have a great time." He believes, "doctors prescribe, God decides" and treats the whole person, not just medically.
Finally, I have progressed to having what I call mini-comas. They come like a train wreck out of the blue, I'll have to crash and will be totally out for up to 28 hours straight. No trips to the bathroom, missing all of my med times, just unconscious in bed. My wife constantly checks to insure I'm breathing. The seem to be coming every 36 to 48 hours now and range from 6 to the 28 hours above. My doctor simply says it's part of the progression and nothing he can do for me.
So, that's about it to this point with each day its own unique battle with the rules changing each day. Our motto, "Just go with the flow and pray God keeps me afloat." May Peace and healing health be with you and your family.
SIDE NOTE: Please allow me to let everyone know how I got here. Back from 2000 to 2004 I was misdiagnosed with RRMS and SPMS. Then undiagnosed to the proverbial, "we have no idea what's wrong with you but it's not MS" category.
Then they believed I had hereditary spastic paraplegia, which lasted about a year and-a-half, followed by a "No, we don't think you have that either." In the meantime I experienced and unrelated near fatal brain stem stroke requiring the med TPA or the "clot buster drug" to keep me alive.
It wasn't until 2009, I believe, I saw a neurodiagnostic specialist who diagnosed me with the following: 1) Spinocerebellar Ataxia and Atrophy; 2) Cerebellar Degenerative disease with Ataxia. Bottom line, the symptoms are very aggressive, progressive with no cure or treatment and a terminal prognosis.
All of this begs the question why am I here? Because of my long history of association and the strong similarity in my symptoms and those of MS to the point I don't fit into any other category.
I hope that provides more accurate information for a better understanding.
) so I read that section too. Very interesting and I kinda, sorta see how the CCSVI procedure can make some feel better, at least temporarily.
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