but it's been a v. busy few weeks.
I left off on my way to see Mark Seem. He was v. nice and patient and took the time to get my history, as well as review all the reports I brought with me. He has a lot of insight into hypermobility and told me some very interesting things about it. One being that the Dutch have a v. high rate because there was a lot of relationships with the Asians when they were a "superpower", and whilst the Asians hypermobility does not affect them in a negative way because they are shorter, when the genes were mixed with the taller Dutch, then it became a problem because size and proportions were all different. Perhaps I'm Dutch??? He also feels that my fibromyalgia is relatively mild and that the polyenthsopathy plays a much larger role. I was impressed he knew what enthosopathy was as most doctors ask me what it means. Poly=many and Enthesitis is an inflammation of the entheses, the location where a bone has an insertion to a tendon or a ligament. It is also called enthesopathy, or any pathologic condition involving the entheses. The entheses are any point of attachment of skeletal muscles to bone, where recurring stress or inflammatory autoimmune disease can cause inflammation or occasionally fibrosis and calcification. (Also see: http://medical-dictionary.thefreedictionary.com/enthesitis ) He suggested because of the hypermobility and fibromyalgia we would work relatively slowly and not leave the needles in for more that 10-15 minutes. The idea was to not trigger my fibro. He used a combination of TCM needles as well as slightly longer needles for the dry needling/trigger point release. Afterwards I was v. tired and thankfully just went home and to bed. I felt a bit worse the first few days but then the pain in the neck and shoulder/upper back area became more localized, which I was told was a good thing.
Unfortunately he had to cancel the next weeks appointment as he was ill, and then last week scheduling didn't work because it was a short week. I went this morning for my second appointment. This time I definitely felt more when the needles were going in. It's hard to describe, originally I wouldn't have used the word painful, more like pressure and a pulling on the muscle - you can kind of feel the muscle "grip" the needle. This time he really got into some trigger points directly which is good, but it definitely felt more intense. He also put some needles in my hand and one in my right index finger. I accidentally moved the finger and that woke me up! It was in a v. sensitive place and even hurt when he took it out. After we finished with my back, he released two trigger points in my TMJ as it's been killing me lately. It still feels like there is a needle in there about an hour later, though not as intense. I was told to not chew or talk a lot. If it brings relief it will be worth it.
Yesterday I went to see a physiatrist as I am meant to get PT to strengthen my neck, but didn't trust anything that daft neurologist said. I went to see Dr. Panagos as Weill/Cornell. He and his resident were very nice and knowledgeable about my various conditions. They told me a horror story about a woman with EDS that can barely function after giving birth, and suggested that I don't do that. Lovely. Although we knew that already, especially as EDS is a 50/50 chance for the kid. I would hate to give this crap to someone else. The doctor said he's sorry there isn't much he can do but the goal is to get me to learn how to help myself, so I don't have to constantly go to PT and such. He wrote out a very thorough and specific prescription for neck PT, saying that I need strengthening but no stretching. I have to say it's so nice to meet doctors that know what is going on, not daft ones like Fatimi who dismiss everything you say and think they know more, when, in reality, they do not have any experience whatsoever. Even Dr. Panagos' resident knew a lot, she said she was surprised I wasn't a doctor. I think I should be given an honorary doctor's degree after all I've been through! Unfortunately our insurance is changing in the New Year, so I will wait to start PT then, so it's less of a hassle.
I think that's about it for now. Happy New Years!
