I met with an Ehler's-Danlos Syndrome (EDS) specialist for the first time on Monday. She has only been working with patients with EDS for a couple of year, and admittedly still has a lot to learn, but she is doing research and learning as much as she can! It was a good visit and I got a lot of good information. We talked about how EDS affects me and what my main concerns were regarding EDS. The main thing we discussed at this appointment was pain management. Thankfully I do not have severe joint and muscle pain as a result of the EDS, at least not yet I don't as pain in EDSers tends to get worse as you age, but it is still enough that at times I am quite uncomfortable. She refilled my prescription of an NSAID prescription pain reliever called Celebrex. This medication is similar to Aleve, but is stronger, longer lasting, and easier on the stomach. She also mentioned some options we could try for localized pain like a pain relieving gel or a lidocaine patch, but we are not going to start those yet.
She wants me to see a podiatrist to get ankle foot orthotics made that will stabilize my hypermobile ankles. My ankles tend to roll easily even when I am walking on flat surfaces and we are hoping that if we stabilize my ankles this will help my knees and hips as well. My hips have been causing me increasingly more problems, so hopefully this will help! I haven't made an appointment yet, but it is on my to do list!
Some individuals with EDS can have a decreased bone density, which can cause major problems later in life. My rheumatologist recommended that I get a bone density screening just so we know if this is something we need to be cautious of as I age. I show no signs of low bone density, but it is important to know if low bone density is present. I was able to do the bone density scan that day and it only took about 8 minutes. It is almost like an open MRI machine that scans your hips and spine and then analyzes how dense the bones are. I got the results a few days later and thankfully my bone density is slightly above average for my age. I will continue to take the calcium supplement I am on (since I do not drink milk or eat a significant amount of dairy) and the vitamin D supplement I am on (since I am vitamin D deficient) and hopefully this will be enough to maintain my bone density as I age.
The final thing that this doctor recommended is that I start taking 2000 mg (or 2 g) of vitamin C everyday. Vitamin C will do a few different things for me. First, as most people know vitamin C boosts the immune system which is crucial for me because if I get sick it is very difficult on my body and I take a lot longer to get over an illness than most people. Second, vitamin C helps to heal bruises quicker and reduce inflammation. I bruise extremely easily because of EDS and my bruises tend to last for a long time. Finally, vitamin C has recently been found to aid in the production of collagen, which is what is defective in EDS. It is not known how taking vitamin C affects EDSers, but there has been some preliminary research and various case studies that suggest that it may help to reduce some of the symptoms of EDS in some patients. I haven't gotten to the store yet, but I am going to at least give this a try! My mom did warn me though that when she was younger she was recommended to take a high dose of vitamin C for bruising and she broke out into a rash. I will need to watch for this when I do start the supplement.
This rheumatologist confirmed that I need to see the geneticist that I am on the wait list for. I am not sure when I will be able to get in with him as it is a very long list and he is one of the top two EDS specialists in the country (with the other being in Maryland). I got put on the list in December, but it looks like it could be next March before I am able to get in with him. She had me make an appointment for 6 months which is in October just to check back in and see how I am doing. I really liked her and it is nice to now have a specialist addressing my EDS issues!
No comments:
Post a Comment