[NeuroNixed Craig]

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.

[NurseNancy]

craig,

i'm so sorry your MS is so severe.
God bless you thru this journey.

[NeuroNixed Craig]

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.

[Dejibo]

I enjoy following your facebook stuff. you rock!

[Kitty]

So good to hear from you, Craig. I was just thinking a couple of days ago "I wonder how Craig is getting along?" and lo and behold here you are!! Guess God hears my "wonderins" and is just letting me know.

[SallyC]

Hi Craig, so nice to hear from you. I think of you often and pray for you daily. I'm happy you made and enjoyed your Son's wedding in June and hope you enjoy a great cruise in February..

You are my hero..

Love, Sally

[Sparky10]

Hold on tight to your plans and dreams, my friend!

[ANNagain]

Hi Craig,

Good to see you here. So glad that you were able to go to the wedding. And, you have the cruise to look forward to.

Bless you and your wife,
ANN

[Debbie D]

Glad you posted here...we love you, Craig, and rely on your strong and miraculous spiritual strength as a model for us with our various challenges...
Glad you were Able to participate at your sons wedding...and I it's great that you're planning a cruise!! Go for it! The worst that'll happen is you'll sleep through it, right?

[NeuroNixed Craig]

I thought you all might enjoy this. As you might also do, in situations like this, you suck it up and "throw the switch" never letting on your true feelings from symptoms. My "switch" was on a lot during that four days requiring almost two weeks to recover once home. All good and all well worth it.

Of course I was the consummate father of the groom, always presenting the highest of good impressions to the hundred plus other people at the wedding. Here, allow me to show you a couple of examples:



As you can see, I did my utmost to behave myself at all times ...... "NOT!"