Saturday, April 28, 2012

Collecting Diagnoses

I'm officially back on the doctor tour! Maybe I should give it a special name to make it seem fun...hmmm... Doc Hop 2012 maybe???

So, the week started out with me getting a call from a dentist who specializes in TMJ disorders. They had a cancellation and wanted to know if I wanted to take it. I said yes, and I was there in the chair within an hour. I had Xrays, impressions made, and an incredibly long history taken. When it was all said and done the Dentist diagnosed me with a TMJ disorder. He said 80% of the people he sees have problems stemming from their muscles, but in my case, it's coming from the jaw. It's due to the hyper extension of my jaw, which is due to the EDS. Of course. I'm having a rather expensive splint made which, according to the dentist, should help with my jaw weakness and pain (and his bank account). I have to say, this dentist was just wonderful. He started out by saying he'd heard of EDS, but he wanted me to tell him more. I told him what kind I had, along with a little information on it; plus, I gave him the website for the Ehlers Danlos National Foundation. He was glad to have that info and said he'd read up on it. He is one doctor that I think could possibly be a speaker at my EDS support group (should I ever get it up and running)

Yesterday, I went to my PCP for my four month check-up. We talked about how I need to start taking Crestor, that I could wait a few months to a year before I needed to get the dreaded colonoscopy and then he did an exam. I showed him what I thought to be a hernia in my abdomen and he agreed that it was. Hernias are another gift from EDS! It just keeps on giving and giving....He said mine appeared to be small and shouldn't cause too much trouble. However, after doing some reading, I'm not sure I agree with him. So much of what I've read says they will grow until they become problematic and have to be surgically repaired. The nice thing is the surgery itself seems to be relatively simple. Although, I'm not sure that would be the case with an EDS patient. In fact, I read several stories of EDSers who had to hunt for a surgeon that would be willing to perform the surgery.

Monday I have an appointment with a cardiologist to discuss my blood pooling issues and other autonomic nervous system problems I'm having. I've been debating whether or not I should go to this appointment. Dr. Tinkle wanted me to see a cardiologist, but I'm just not so sure he knows what kinds of problems go along with EDS. I probably should print up some info for him and give him the letter from Dr. Tinkle explaining my diagnosis. I just hope it's not a big waste of time.

I finally decided that both girls should see Dr. Tinkle. I called and got all of us set up for appointments in October. Elizabeth is continuing to have problems with her knees and I'm afraid she already has arthritis in them. I just want to make sure they get the care they need as early as possible so that they might not end up as bad off as I am.

Well, I could go on (and on), but I'm worn out. Earlier today our Katie graduated from college!!! Way to go Katie!! Between the ceremony and the eating out afterwards it turned into a five hour outing! As soon as we got home I had to get horizontal. Thank God for my bed...lumps and all!!

I'll be back on Monday to talk about the appointment with the cardiologist. Prayers and/or good thoughts are appreciated.

Shari

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