Sunday, February 1, 2009

The week that was...

Two major things, anyway I suppose they are major, happened this week.

First, after quite an odyssey of seeking care for my TMJ problem, I finally got a new appliance. I've been trying to replace my old crumbling one for three years. I have been told that I have a "complicated bite"; several dentists and orthodontists did not want to have anything to do with that complicated bite (one said it was fear of lawsuit that kept him from treating me). One guy was quite confident that for ~ $50k he could fix my mouth. He was a bit too eager and too confident and would not work with my insurance, so we passed on him. Another orthodontist accepted me as a patient, but said repeatedly that if I wanted to go somewhere else, I would not hurt his feelings. I kept trying to get insurance to pay for something, anything (I've worn an appliance since 1986 and insurance always has paid), but finally I got a letter from them saying to quit applying--they would not pay unless my jaw locked shut (see below).

The fellow I spoke of in the last post was very knowledgeable, confident yet not brash, and I'm very pleased with my new appliance. Already some painful areas have resolved. He says it will take 3-6 months of follow up to get everything right in terms of head and neck pain. And unlike my last appliance, this one is hardly noticeable.

I'm really pleased. This appliance has gotten so much of my attention due to the fact if I don't have one in for over a day, my jaw locks shut. I've had that happen a couple of times which necessitated mechanical and chemical intervention. Horrible experiences which I never wish to repeat! I'm very thankful we could pay for this (not cheap) out of pocket--if this had happened when I was a single parent, I guess I would have had to let the jaw lock and face the consequences.

The next thing is that my neurologist thinks I may have myasthenia gravis. If I do, though, it is a "piddly" (his words) case. Within the last several months, I've developed a droopy eyelid that is really noticeable when I'm tired. Also when I'm tired, it is difficult to swallow without choking. I had some testing done prior to our trip to MO--one test was negative, but another was positive. What he proposed was to start me on a month long trial of mestinon, one of the meds that is used to treat it, and if my symptoms improve, I'll stay on it. If not, we'll look at other things. I started the medication today. I've had it for a couple of days but just didn't start it. I'm thankful that I have prescription drug insurance that pays for this. And I'm thankful that this "piddly" case, if it is MG, can be so easily taken care of.

Meanwhile, I'm making chicken suiza for our Super Bowl dinner tonight. I've never roasted peppers to the point of a char until today which was pretty cool. Joy found in the little things, like roasting peppers under the broiler, is what counts for me!


FranIAm said...

Oh my goodness, Laura! I am glad that your TMJ appliance journey is taking a better turn at last!

But that other diagnosis, oh dear.


Anonymous said...

As someone with severe MG there is no such thing as piddly. Also you are starting out exactly like I did. And just because the blood test came back neg does not mean you don't have it. I am sero neg. Have you had a tensilon test?
Please do not disregard this and be careful. I spent six months with a neuro who kept telling me I didn't have it. I almost died until I got to the Mayo Clinic in Florida. It is good that he's willing to treat you with mestinon but remember if you get too much it is the same as not getting enough. My advice would be to go to Yahoo groups and read from some of the sites there.