Category Archives: Identification

Significant Relief? Possibly

At the last doctor visit, my wife latched on to a murmur from the doc.  He asked if I noticed if the weather affected my condition.  My response was that while I thought the increase in humidity did me well, the elevated temperatures seemed to really increase my symptoms.

His reply was simply that MS patients reacted badly from heat.

We thought about this for a while. After about a week, my wife got a friend to install a window unit in my room so that I could be in a deep freeze.

I have been sleeping like crazy.  My muscle pain is reduced.

I still have my spasmodic events.  However, recovery is in hours, not days.  The veracity of the events are not lessened.  I have several pulled muscles from an event on Saturday and again on Monday.  My body feels ravaged, but I feel like I’m repairing.

The addition of the AC has been a god-send.

One really negative thing, that I must put here so I can accept it, is the following:  We were talking about how much trouble I have picking up eating utensils.  A good characterization of my problem is in pealing figs.  I can no longer peel figs.  They either fall from my hands or I crush them.  His explanation is that I have a feedback loop problem that is caused by the dying nerves.

“Dying nerves.”  I cried for three days at hearing that phrase.  I had read about it in my research that ultimately that is the problem.  But, it was the first time that I heard it come from someone else’s mouth. Ugh.

Unfortunately, it appears that I’m having seizures.  I had an EEG on Thursday and we are waiting for results.  I pray that he does identify the seizures as those are well documented and treatments are readily available.

My thought process is this:  If seizures are what is causing the spasmodic events, then we can treat them.  The spasmodic events will still occur, but with less damage.  This along with our methods of healing the muscles (the AC, restorative sleep, protein drinks, etc), my quality of life will improve.

I so wish to be able to attend church services and travel to see my friends and their kids.  I miss them. It has been almost two years since I’ve been able to really visit.

Until then, I will continue to force myself to get adequate rest (with Benadryl assisting, if need be), and take care of my body.

So, as it may be, we are still making progress.  I’m hoping our progress out-paces the progress of the disease.

I thank you all for the private messages and claims that “If anyone can figure this out, you can.”

The statement is becoming a common refrain from people that know me personally.  I am amazed in the faith all of you have.  It emboldens me.  We will figure this out.  We may not ultimately be able to put a definitive name on it, but we will be able to learn how to effectively do battle with this.

Until next time,

In Christ,

Jay C. “Jazzy_J” Theriot

More Bad News

I have been lax in writing over the last number of weeks for a litany of reasons.  One reason being the lack of control of my fingers.  Other reasons dealt with either medical, scheduling, topical, psychological or just plain wishing all this would just go away.

It didn’t and it won’t.

The finger issue is pointing to a feed-back loop issue that is due to the death of spinal and bulbar nerves.  The actual words used in the doctors office was “dying spinal nerves,” Not a phrase I like to hear.

Another word that was thrown around was seizures.  I have an EEG scheduled to see what type of seizures they are.  I was befuddled, because my “seizures” last 36 hours.  From what I thought I knew about seizures was they only lasted a few minutes, not a few days.  Again, I am wrong.  There is a chance that they are not seizures.  I will pray for that.

Pending the outcome of the EEG, occupational therapy is likely going to be scheduled.  I’m having trouble feeding myself.  This hasn’t translated to weight loss, as you would hope.

To say the least, I am down. I now have more meds prescribed and I’m about to purchase the mondo-sized pillbox.  I am very fatigued and injured.  During the latest “seizures” I pulled the muscles in my legs and arms.  And, my legs stop working frequently.  I have to lock my knees and hold on the the walls of the hallway to make it to my wheelchair when they do.

My puppies fear for me.  They do not leave my side when I’m in trouble.  Once I’m in the safety of my bed, one relaxes and the other stands guard in my room or my bed.

This whole disease is exhausting and I am mentally fatigued by dealing with it all.  I wish I could take a vacation away from myself, but that isn’t really possible.

I pray that He has a reason for all of this.

In Christ,
Jay C. “Jazzy_J” Theriot