Slightly overdue

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!

Acupuncture

I decided to try out Dr. Mark Seem, and my first appointment is tonight. I've put together some information about my medical past and I'm sure he'll think I'm a complete nutter with all of my issues, but what can you do? I think it's a good idea for the doctor to have a clue about this stuff, how else can he treat me? My appointment is at 18.30 and I wish it was sooner. My back is a bit better but my neck is still in a lot of pain, though the chiro did say I was much better than last week. I know I'm not supposed to put all my eggs in on basket but I am praying that this work will help, at least a bit. I am being optimistically cautious I guess. Other than that this weather bites. I so wish I was somewhere warm and dry.

Spaghetti joints

That's what I have. After I went to the chiro today, I was walking down the street to get lunch. As I took a step off the pavement into the street, my left ankle completely gave out, and the next thing I knew I was on my left knee facing the street. Thankfully no cars were coming, and a very nice woman gave me her hand to help me up. Roughed up my pants a bit a little knee damage, but more scared than anything. I was able to walk it off with my ankle. I have had weak ankles for as long as I can remember. Whenever I run my ankles give out and I go crashing to the floor. One time when I was about 15 I was running down the hallway at home and my ankle gave out, and my other leg was mid-air and since I couldn't put the other foot down, my foot crashed into the wall, hitting a beam of course, and smash went my little toe. I was on crutches for a few days. It's always fun being me! My ankle hasn't given out that blatantly in a while, so I was definitely caught off guard.

Other than that, my chiro/massage was nice, and I'm going back on Friday because my neck and back are still so tight. I heard back from Mark Seed ( http://www.tsca.edu/site/about/faculty/ ), the acupuncture college guy, and I have an appointment on Thursday, 11 December at 6.30pm. I didn't speak to him directly but he said on my VM that it is an hour for first visit, and $135. Subsequent appointments are $120. He is located on WEA and 79th Street so it should not be too difficult to get there unless traffic is v. bad, as there is a bus that goes along 57th Street.

I am still not sure which person to go to, him or the other lady I had spoken to yesterday. I think I will try him first and see how he is. He does sound like he knows what he's talking about since he runs an acupuncture college and has written text books and articles. I will keep you posted.

Pain in the neck...

Wednesday was good, I went to the pool after work, then my SIL came in with my nephews. We went to see the balloons being blown up. Thursday we went to the parade, thankfully we had nice weather and it wasn't v. cold out. The only other time I have been to the parade it was FREEZING - I kept buying hot chocolates not to drink, but to keep my hands warm! I was feeling the same as I had been feeling, nothing hugely different, until Friday night when my back and neck started to tighten up. By Saturday I was in lots of pain and it just kept getting worse. Sunday afternoon I actually took a muscle relaxer when I got back to the city. Since I am so sensitive to drugs, and also b/c this particular drug had given me hallucinations in the past, I only took one pill, though the label said to take two. It was a good thing too, because it wiped me out. At least I made up for the lack of sleep I had the previous nights. I was passed out within half an hour, and completely zonked out. It definitely helped, but I can't possibly take that and think I can function. My neck and back are still killing me and unfortunately the chiro wasn't in on Monday. I can't go today but am going tomorrow. I hope I make it. It feels like someone has put a vice around my spine and is tightening it. Lovely, I know.

I did speak to one of the acupuncturists yesterday. She seems to think she can help me, and also works with a lot of other techniques other than dry needling (aka trigger point acupuncture; aka acupuncture physical medicine (APM). The other guy I heard back from only just graduated and I'm thinking I need someone with more experience. Another person I had emailed me responded saying I should see Mark Seem, who started the Tri-State College of Acupuncture. I left a message on his vm so we will see if I hear back. Otherwise I will see about the first lady, Roberta Mittman. She does seem a little more pricey than what I've been seeing, but I may not have a choice. It's incredible the amount of money you have to spend to feel better, even with bloody health insurance. Drives me batty to just think about it! I just really, really, really need to sort out my neck and back right now, it's absolutely killing me.