Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About sugartwin

  • Rank
    Advanced Member
  • Birthday 09/24/1980

Contact Methods

  • Website URL
  • ICQ

Profile Information

  • Gender
  • Location
  • Interests
    reading, writing poetry, interior design, sewing

Recent Profile Visitors

2,146 profile views
  1. Ugh! EDS people look like regular people! Except in the Vascular type, there's no predominating facies, only a few features here and there (epicanthal eye folds, the antimongoloid slant.) That doesn't mean you can't have it.
  2. I have hypotension, but I didn't start out that way. Initially, my blood pressure went up along with my heart rate when I stood. As far as I can tell, the degree of orthstatic hypotension in AAG corresponds to the severity of the disease/autoantibody level. There was some trial I read about that only wanted people with drops of 30mmHg or more, whereas mine is just 10-15mmHg.
  3. Dr. Chelimsky was my old neurologist and I can't say how I wish this testing had been done on his watch. I know he would have a more satisfying explanation than the one I just got. If you haven't seen Dr. Chelimsky before he's absolutely wonderful. He listens. He's considerate. I wish they were all like him. Also, Jen, I think issie is onto something with the Driscoll theory. If you haven't read it yet, you definitely should. It reminds me of what your chiropractor is theorizing about; spinal fluid trapped and unable to drain. I don't know if that's the case for me or not. I have reversal of t
  4. Hey arizona girl, I know I had igg drawn two years ago when I had my first round testing done and it was low normal, I think. I have to go through my huge binder o' records. Maybe I should have those done again. And I kept pressing him with the large fiber thing because I had just read the EMG report. He said my EMG was "perfectly normal." I said, "What about the loss of my reflexes?" He said, "some people with small fiber neuropathy lose their reflexes." Which is the exact opposite of everything I've read, which is deep tendon reflexes are present in small fiber neuropathy. It's bothering me.
  5. This is what my diagnosis was changed to after my autonomic testing earlier this week. I had long been feeling that I was getting worse, but had been brushed off for awhile, so I'm glad I got the opportunity to repeat my testing, starting with an EMG that was abnormal (loss of reflexes, causing ataxia and loss of proprioception) and autonomic testing with QSART, valsalva, tilt, etc. I just wasn't expecting such grim news. My neuro said that two years ago only my feet had stopped sweating according to the QSART, but now only my upper arm is sweating and only a little bit. He said if he does the
  6. One thing I have found very useful during my current flare is tilting the bed head up a few inches (I did four.) It was on my neuro's list of helpful tips and tricks and at first I wasn't sure how it would help at all. Although the list recommended not exceeded 3", I did 4" because that was the size of the concrete pavers I had access to in order to elevate the bed. It seems to work in one way by preventing you from lying completely flat. That way, even when you're sleeping, your heart isn't completely in the "at rest" position. After just a few short days of lying down and sleeping in this po
  7. TMJ can be a symptom of EDS. And it is also possible to be hypermobile without knowing it. I measure 7 out of 9 on the Beighton Scale of hypermobility, yet I never thought I was any more flexible than anyone else until I was measured. If you are in the US, you need a geneticist to diagnose EDS, preferably one who specializes in connective tissue disorders (Marfan, Sticklers, etc.) in the UK, some rheumatologists can diagnose it as well. In the US however, most rheumatologist seem to be pretty clueless.
  8. I've mostly been seeing my neuro's nurse practitioner lately since he's so busy, but they seem to be drawing a blank beyond "it's not MS." I asked to have my B12 tested since I'm a vegetarian, but they didn't seem to think it was likely. It is disturbing. I have constant tingling sensations crawling up my legs and I often lose my balance for no reason at all. I think whatever is doing this is definitely what caused the small fiber neuropathy too. I often have on and off numbness which is why I ignored it at first, but this is the first time it's gone on for so long and lead to other symptoms
  9. Has anyone had their small fiber neuropathy progress into large fiber neuropathy? Or developed large fiber neuropathy for any other reason? In the last few months, I started having trouble with numbness and tingling in my feet. I also noticed a lot of other bizarre symptoms, like not being able to tell temperature changes (putting acetone nail polish remover on my toes and not being able to feel the coolness as it evaporated.) I tried to ignore it, but when the tingling started creeping up my legs, I made an appointment with my neurologist. That's when I found out that I couldn't walk in a str
  10. I have both EDS and seizures associated with my POTS. My little sister is going through something similar: I've been diagnosed with EDS, she hasn't yet, but she is having bizarre symptoms. Realistically though, I can look at my sister, see her Marfanoid body type and know she has EDS and from there reason that her symptoms are probably caused by dysautonomia. She might not necessarily have very flexible joints: my sister only has one or two. If your sister has no such 'dead giveaways' I think it'd be really smart to have her evaluated. Don't rely on the doctors to 'discover'it, it might take t
  11. I live in Bedford Hts, on the southeast side of Cleveland. I don't exactly get out a lot, but I'd love someone to chat with.
  12. I hate when that happens. I think it's not so much a drop during the night as just the normal lower blood pressures you have during sleep falling slightly into the too low range. That's all it takes for a burst of adrenaline though, and resulting tachycardia, getting jolted awake, etc. I always eat something super salty before bed, that usually works.
  13. I read that testing skin hyperextensibility recommended to be done on the forearm, palm side up. Normal is no more than 1.2 cm of extension. More than that is considered hyperextensible. That said, every doctor seems to have their own idea of what actually constitutes "stretchy."
  14. She is worth the trip. I have only seen her at University Hospitals of Cleveland where she used to be employed, but Dr. Chelimsky herself is one of those few doctors who is both very, very knowledgable and very, very kind. She agreed to see me even though I was 30 years old and was always compassionate to me, she works in her tandem with her husband who is a neurologist and they make a great pair. I wouldn't hesitate to go see her.
  15. I have EDS and have small veins as well. I once took a picture where they had stuck me eight times before finding a vein. I had bruises all up and down my arms from where they'd gone right through them. And yeah, I have the roly-poly veins. Phlebotomists say, "but I just had it!" and "it moved away from me!" These are things that you won't find in any medical journal though, just a kind of word of mouth trait that many EDSers notice they share. Also, sometimes you aren't a good judge of your own hypermobility. If you've grown up thinking you're normal, you tend to think that others are the
  • Create New...