Sorry it has taken me so long to get back here. The first few days after we got back I was busy setting up appointments, both here at home and in Cincinnati. Between that, work and the every day stuff, I've been super busy. And, of course, I am having a pretty big flare up. I haven't felt this bad in a very long time.
Okay, so I saw one of only two or three Ehlers Danlos' Specialists in the country and probably one of only a half-dozen in the world! He really knows his stuff. His office is in the Children's Hospital, so it was decorated for the kids. There were all kinds of colorful wall murals and the staff was super friendly. And, I didn't see one "no food or drink" signs. In fact, the floors were all tile. It's funny what you notice. I suppose I've had plenty of experience scoping out medical facilities...how said is that?
The appointment began with the dreaded weight check. Thankfully, it was in Kilograms and I didn't ask for the conversion. Besides the blood pressure check, I had my head circumference measured. I'm sure that was the first time that was done since I was an infant. Once we got back to an exam room, the genetic counselor came in. She asked a lot of questions about my symptoms, family medical history (which I know very little of because I was adopted), our children's health, etc I gave her a typed up medical history, symptom list, current meds, etc that I had put together. I also gave her a flash drive with pictures I'd taken of the girls showing their hypermobility. I figured since I don't have much family medical history I could show the genetic link through my kids. For me, bringing in the paper work and flash drive was risky. After seeing so many doctors, I've learned that you have to be careful about what you say and do. I was afraid I'd be perceived as being a neurotic hypochondriac. But, thankfully, that wasn't the case and they gladly took everything I brought and looked it over.
After a few minutes, Dr. Tinkle came in. He was very nice, but as a new EDS friend told me, he was also a bit reserved. He definitely had a sense of humor, which I always take as a good sign. We talked for a few minutes, then he examined me. He gave me a 5 out of 9 on the Beighton Scale (a scale used to diagnose Ehlers Danlos). He said I was probably a 9 out of 9 as a child, but that the older you get the flexibility tends to decrease. He explained that he thought I had Ehlers Danlos Hypermobility or Type 3 as it used to be called. This type is considered the least life threatening, but it probably has the most pain and dislocations. Because EDS is a disease of the connective tissue it can affect your whole body. The type I have can affect your digestive system, heart, eyes, autonomic function and other bodily systems. He looked at the pictures of the girls and said they appeared to have it too. Of course, he couldn't diagnose them without seeing them. But, it is pretty obvious that they do have it. He said he didn't need to see them unless they started to have symptoms. Well, Elizabeth already is, so we will probably take her to see him sometime within the next year.
We discussed different medications. He wants me to take an NSAID med like Advil daily. He also suggested a daily pain med such as Tramadol. Because my shoulders are both so bad (they dislocate daily) he wants me to see a shoulder surgeon that is familiar with EDS (he is in Cincinnati too). I'm going to have a consult with a physical therapist there too. I will be evaluated and given a plan to either take back home and do myself, or, hopefully, find a local PT willing to learn about EDS and willing to work with me. He said he prefers his patients to educate the medical professions in their hometown. I suppose it really does help to spread awareness about EDS, plus it's much more practical to work with someone in your own town. Both he and the genetic counselor gave me their business cards with their email addresses and other contact information. It's great to know that I can have that kind of access to both of them. He also made a point of saying that he is always willing to speak with any medical professional regarding my care as so many of them know so little about EDS.
I know we talked about other things, but I don't know if I could remember what they were. I so wish I would have been taking notes or that I would have had a voice recorder. Tim was with me, so that was helpful. To be honest, once he made the diagnosis I'm not sure what I heard. It was seven years coming and my mind was just all over the place. I cannot even begin to describe what I was feeling. It was surreal.
I'm sure I've left something out. But, that's the important stuff. Since we've been back (it's been over a week now), I have been going down hill. It's so frustrating to go through these declines. They seem to be coming more often and I have to say they scare me. Even though I don't know what the future will hold for my physically, I have to say just having the mental peace of mind will make it so much easier to deal with. I feel so empowered to now know what it is I have and what I can do to help myself. I'll need a team of doctors, physical and occupational therapist and plenty of help from family and friends. I think once I find people willing to help me I'll be all set. And, having the diagnosis will make it much more likely that I will find doctors willing to help.
Today I took a Lortab (just a half of one) for the first time in months! I hate taking them, but honestly every time I do, I realize how much better I feel and how I am able to be more productive. In educating myself about EDS I ran across some information regarding a Continuing Education class for doctors and other medical professionals. This is what the intro said about EDS:
Ehlers-Danlos Syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by joint hypermobility, skin extensibility, excruciating pain, and tissue fragility.
The excruciating pain really caught my eye. I have had so, so much pain. In fact, I think the severity of pain that I've had actually delayed my diagnosis. So many diseases with pain are able to be found through medical testing...blood work, x rays, etc....In my case, nothing was ever found, so it just made it that much more difficult to connect the dots. I've dealt with muscle and joint pain, neuropathic pain, muscle weakness, fatigue, and GI issues.
OK, I'm done. It's time for me to get to bed. I just really wanted to get back here and finish up and post this entry (it's now the September 21 and I started it several days ago!)
Thanks for your prayers and support they mean a lot to me.