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sarahdionnaParticipant
The geneticist called me today and we talked some more. She said that she does believe that I have some form of hypermobility but she doesn’t know what to call it since my symptoms don’t fit perfectly into any known diagnostic criteria. With EDS, she feels like I’d be closest to type 3 but I don’t have any history of dislocations. Being thrown in the “Joint Hypermobility garbage can” is the only answer she can provide at this time. She said there are a lot of hypermobility and connective tissue disorders out there that don’t have names yet and she thinks I have one of those. She does think my POTS and GI mobility issues are from the connective tissue issues I have. One more piece added to the puzzle. Yay!
sarahdionnaParticipantI have the longitudinal ridges in my fingernails and the thick banded horizontal ones on my toenails. I will take pics tomorrow when I wake up. Bedtime now. Lol. Some of my toenails have spontaneously fallen off as well. I thought maybe I had dropped something on my toes or someone stepped on them but I don’t remember that happening within a few days or so of them falling off. It is just odd.
sarahdionnaParticipantI have been finding out recently that my family has a lot of hypermobility as well. My older brother can dislocate his shoulder at will. It was so freaky to watch him do it. His lung collapses a lot as well. I am actually more afraid for him that I am me, though I seem to have a lot more going on than him.
Hang in there and I hope doctors figure you out soon! 🙂
sarahdionnaParticipantWhen I am sleeping, I will wake up all of a sudden to this terrible burning smell. My nose and throat will actually burn really bad. It will smell and feel like burnt buffalo wing sauce and no matter what I do or what room I move to, I can’t get the smell to leave me alone. I burn a lot of candles and spray my favorite perfume on my blankets and pillows so I can bury my face in them. My fiance swears he can’t smell it.
I also have a weird taste that happens when eating, especially with chips. I will be enjoying my food and then all of sudden, it will taste like old tuna with a hint of floral tasted thrown in. I always have someone else try the food and they say it tastes fine.
Randomly, while doing nothing at all, I will develop a floral taste in my mouth and smell in my nose. It also burns. Again, no one else smells it.
Edit: Usually my sense of smell is really bad and I can only smell really strong smelling odors.
sarahdionnaParticipantI am really excited to read it!!! 🙂
February 7, 2012 at 12:31 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1729sarahdionnaParticipantI usually have a high white blood count and sometimes low red blood cell count. That is all they have told me about my complete blood counts so far.
February 6, 2012 at 11:20 am in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1721sarahdionnaParticipantWhen I lie flat on my back, it actually hurts my back, neck and head. I get a lot of pressure in my head and it feels really heavy to pick up. Some mornings I have to pick my head up with my hand or roll over. I always fall asleep on my side but for some weird reason, I always wake up flat on my back with my ankles crossed and my hands folded over my chest. I feel like I am preparing myself for burial or something. My arms do go numb and feel tingly as if they have fallen asleep. Sometimes when I faint, I will feel paralyzed when I first come to and some mornings when I wake up or when I wake up randomly in the middle of the night. I also have a lot of occular pain. It seriously feels like someone is trying to squeeze my eyeballs out of my head from inside my head. My eyes, nose and lips are almost always swollen when I first wake up as well. I have this headache that feels like I had been swimming all night and took water up my nose somehow.
sarahdionnaParticipantMy first faint and first time noticing any type of unusual symptoms was August 2, 2004. I was 18 and standing at the position of attention in a Marine Corps promotion ceremony. I was medically retired a year and a half later. It took them a year to diagnose me with NCS and POTS.
February 6, 2012 at 11:05 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1719sarahdionnaParticipantI just wanted to chime in and say that I also have the neck and shoulder pain every day. I almost always have “knots” around my shoulder blades and around my spine. The shooting pain will circle around my ribs into the front and under my breast tissue even. My fiance is required by our “contract” to give me at least one massage a day… for the rest of our lives. 🙂
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