Sunday, July 26, 2009

Can I Stand One More Thing

I play a mental game, could I live with this....., then insert one of the less pleasant symptoms of MS. As I steadily inch downhill, everyday is spent in the unpredictable amusement park of multiple sclerosis. I am like the person staring at the Matterhorn Ride and trembling at the thought of climbing on that little car. This morning, it seems that I am forced into riding along--whether I wanted to or not.
The slow, subtle decline in percentage increments such as the diminishing sensitivity in the bottom of my left foot, is easy to ignore. Much like termites--MS nibbles away, behind the scenes, and I don't see the damage until the floor falls into the basement.
I have laryngeal spasm, that causes me to cough, choke, and drool (Oh, Joy). The severity comes and goes, but mostly I am able to ignore it. Everyone coughs, chokes, and (admit it) drools on occasion. Today is a different story--whenever I talk or swallow an intense fit of coughing follows. My throat feels tight and closed off. And, to add to the indignity, my weak bladder gives out and I pee. Also, my upper torso feels like it is slowly being squeezed in a vise. (apparently, this is known as the MS Hug). I wonder if I could live like this, silence, coughing, choking, peeing and being hugged by Big Foot. Simply put, this sucks!
What to do--should I go to the ER. What if my throat completely closes up? Doctors don't seem capable of helping me. A pulmonologist told me this isn't treatable, but then, nothing with MS is. Alleviated maybe, but not cured. A visit to the ER only results in more medical bills and a reminder that my symptoms are mostly untreatable.
I've read that Botox injections to the affected parts of my throat can help. First, of course would be expensive, icky tests like Barium Swallow, and Swallowing studies--then, if the doctors see anything, the Botox is inserted into my larnyx directly through the front of my neck. And, it isn't considering very effective. Sometimes choice in MS is no choice at all.
A friend said that even when you find yourself standing in the ashes, God is there. I cling to that on these bad days. It is easy to be a Christian on the day you win the lottery, but immeasurably harder when the losses pile up. I have on my sound cancelling headphones and am listening to Praise music. Right now, that is all I can do while I wait and see how bad these symptoms are going to become.

2 comments:

Stuff could always be worse said...

A great post, I always say that here, but I mean it. I have that choking problem also but not in front of the barium swallow test. So I just have to live by faith also.
Kim

Anne said...

I have experienced laryngeal spasms early on in the 33 years I have had MS. I choked on almost everything I ate, drank and inhaled (ex: intense odors).

While eating, I'd often go into a choking spree, which resulted in turning beet red, losing my urine, and bringing up my food. Very embarrassing. Nothing I did helped to get rid of it.

Voice became hoarse, then finally went. Gone for 9 years. I whispered. I couldn't even yell at my kids! As for eating, I resorted to putting almost everything into a blender for many years, then moved to soft foods. I still eat soft foods, nothing tough or requires a lot of chewing (causes my TMJ spasms)

Went to an ENT at a teaching hospital. In the 1980's, this Symptom was a little-seen complication of MS, because it is usually associated with end stage MS; many doctors were brought in to exam room to view my throat. I knew this going in -- it's a teaching hospital!

As it turns out, acid reflux had eroded my esophagus and vocal chords. They said it was the worse case they'd seen. Really made me feel better. Not. Being a medical professional, I should have been more on the ball and I dropped the ball. I was so wrapped up in trying to focus on the MS that I lost sight of what the MS could do to the rest of me and my body parts.

My body's compensation to protect other organs in throat was to grow skin over it - it is called "elephant skin" because of its thickness. That is what caused my voice to leave me. Sound could not ping off of it to make noise. So I had the elephant skin surgically removed in 1986.

Woke up after surgery the same; a week later - still no voice and still choking - even on water. Had to spray with Lidocaine just to be able to swallow nutrition.

I told my doc that I wanted to start on a schedule of antibiotics along with probiotics (LOTS). No more surgery, please. I was taking Prilosec six times a day, antibiotics 4 times a day for 90 days. Had another exam, it looked good, voice was coming up a little bit, spasms were getting less, but another schedule of drugs was agreed.

90 days later (6 months in all), voice was up to where I could be heard on phone, spasms were gone, coughing was minimal, and acid reflux was in check. I hadn't noticed the acid reflux had gotten so bad because I had it for so long and was used to being miserable.

Vitamin E was increased, Omega 3 Fish Oil was added, soft diet introduced and lots of liquids in various thicknesses as tolerated. I still spray with Lidocaine if the choking gets bad and adjust thicknesses of fluids. It goes in drips and drabs - most of the time I am ok, but if I get sick or have a flare, my throat is one of the attack zones and diet has to be adjusted so I can swallow.

So, maybe you need to go see an ENT and let them have a look at your throat. It is possible you need to go on Nexium (which replaced Prilosec with most docs). It actually heals, not just treat the symptom.

MSer's often need to see a variety of docs, because one doc can't do it all. Besides it is the American way - spread the health care dollars around so everyone makes money off of it. LOL

And any doctor who says they can't treat what's wrong with you, you need to go to another opinion, then another and another - because, after all, this is not the dark ages. There is always something that can be done to treat - maybe not CURE, but at least treat.

Take care and I do hope you feel better soon,
Anne