Roller Coaster Update

Brain, Brain, What is Brain?

Thank you, Leonardo for finally helping me see what my brain on MS looks Like! Or at least feels like...

And, thank you to everyone who has emailed and commented and prayed and helped out over the past few days. We are still here and some things are better. I am always so glad to be able to report that. Here is the latest:

• I saw an ENT on Tuesday and, amazingly, he was knowledgeable, believed me, and told me this throat closing thing isn't going to kill me. I say that rather flippantly, but, after four years of that flitting around on the edges of my consciousness, I am over joyed. 
• Apparently the throat spasm is triggered by a signal from my brain and if I were to pass out, the signal would be interrupted and my throat would open up. I am seeing a speech therapist to work on this and taking a new med.
• My cough is helped by the med-but it makes me loopy. Not too surprising given my life long membership in the blonde camp. And, that the doc said only a few MS patients get loopy from this med!
• As I suspected my intermittent nasty sounding cough isn't from sinus or throat problems. Nothing quite like having a nasty tasting numbing medicine sprayed in your nose followed by a scope. Not my favorite test, I must say.
• So, I am tentatively eating solid food, swallowing pills and trying to let go of the fear and panic that Sunday's scary episode brought to the surface.

Again, thanks to all for the love and support. Especially my hubbie who stands by me through everything-even magically procuring an emergency appoint with an ENT for just 24 hours after he called my neurologist. 

Take a wild ride on the MS_symptom rollercoaster

Yesterday was all over the map in MS adventure-land. Started my day with too much arm pain and fatigue to make an attempt at church, later the sun came out and hubbie and I took our dog on a longer than usual walk, and after a couple hour rest, I even managed a trip to the grocery store. The kind of day that might seem normal to some, but for me was tilting more on the plus side.
In seconds that all flipped on its head. It seems that the way MS manifests itself in my body follows a simple rule: if it is odd, rare, unheard of, or untreatable then my body says, "come on in and join the party."
One of the reasons I stopped working was a diagnosis of laryngeal spasm. As simply as possible, this condition is the weakening of the nerves that control the opening that leads to the larynx. Sounds rather benign until one considers the word 'spasm.' As in sudden tightening of muscles, that, in this condition, causes coughing and choking and, rarely, causes the throat to snap closed. The doc warned me this could happen any time, any where. I was deeply scared at first, imagining myself suddenly unable to speak or breath, but after years of on and off bouts of coughing, swallowing trouble, and drooling, and no outright episodes of not breathing, I thought I had this particular annoying symptom under control.
So, back to yesterday. Manageable day, throw in a load of laundry, see about dinner, and watch a movie with the old man-no problem. As I carried an armload of socks and underwear down the hall, my throat constricted and I couldn't breath. No speech, no air, nothing. I have never been so scared. I pounded on the wall and J came running. Suddenly, my throat released and I could breath again. Seconds only, but, for me time collapsed into an indescribable jumble. J held me, rubbed my back as I coughed and gasped. Slowly, the episode faded. I had peed all over my self. Since everything seemed back to normal I went to change and clean up. It happened again. 
And again.
For the next two hours, at random moments my larynx would snap shut. It felt like the hand of a giant, no an evil imp, really I don't have the words to describe the terror I felt. 
We did the whole hospital debate. What if my throat didn't open up again. I could die. But, there is no emergency treatment for this, short of tracheotomy. I ghoulishly suggested John should go sharpen a phillips-head screw driver. Crazy as it seems-cost factors in-both the wallet and emotional kinds. 
People, even docs, don't get MS. I just couldn't face sitting in some ER, dealing with all of that crap, and having to explain and defend my illness. 
I made it through in the only way I know how: with my sweet husband by my side, calling the family medical expert, and sending out an urgent prayer request to my church family. 
I refuse to be defined by or controlled by MS. I am still clawing my way out of the web of fear that this episode caused. It is right there, a whisper of thought on the near edge of my mind: when will it happen again, when.
I coughed so hard last night that my weak shoulder slipped a bit out of its socket, J is getting to be a pro at popping it back in-so it hurts this morning. The tendons in my neck are tender so it hurts to move my head. My throat is raw and I keep coughing. I have a searing headache.
And, I have fear.