Monday, February 1, 2010

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.


Anonymous said...

Thanks for the update Janine. We're praying for strength for both you and John to get through this. Jill

Anonymous said...

Dear Janine, This sounds really scary. I am so sorry. I wish there were some place you could get advice on what to do in this situation. Is there an MS society where there are experts who answer questions? Did you talk to your doctor? I wonder if anyone has ever died of it? If not, then it might be less scary. MS seems to be a very unusual, variable kind of condition (maybe it is many different conditions?). It is discouraging that you dont find knowledgeable people at the avaiable health facilities. I am sure it is tedious to have to be the teacher... You should give lectures at the Medical school. Nancy

Bibliotekaren said...


I am so sorry to hear what you're going through. I've had swallowing, throat, breathing problems at times but nothing like what you're talking about. When my symptoms move into that area, it all becomes so primal. Like all my other symptoms and malfunctions are nothing.

I went through a period with repeated reactions in my throat and breathing. I would sit in my car outside the ER while it passed just in case. I get not wanting to deal with that all unless you really need to.

I'm glad you have support around you. Take care.

Janine said...

Posting this for my friend and wise counselor; Ted Stagner "My comment had to do with being greatful that you had gotten some peace from a professional in regard to the fear component and its relationship to your throat constriction. I would agree with him both from my training and my own personal experience. When I am trying to help someone give birth to emotional pain because that person is afraid to let it go because they are afraid of what will happen physiologically, I tell them your body will shut down on its own before it will let any self destruct happen, so should it get to the part of passing out it will be taken care of automatically. So, I generally encourage endorsing the pain and letting go. Of course we can visualize holding the Lord's hand in the process. I alluded to my own experience many years ago with ashma and feeling like I wasn't going to be able to breath. It took the doc a couple of visits to figure out that my problem was fear and that I should breath into a paper bag as I was over breathing. Well I have never used a paper bag, but it was helpful to understand that fear was my biggest enemy. I am not equating my problem with yours, but I do know that fear is pretty big and I am very sorry that you are having to go through this process. I have really appreciate your sharing of your journey as you are such a good writer and your faith is wonderful.