Forum Replies Created
January 1, 2012 at 6:26 pm in reply to: Do you feel sick when you lie flat on your back, or have you ever felt "paralyzed"? #1628
You know my answer but I did get a more accurate BP cuff for Christmas so one of the days I may repeat the experiment for you. I also have a slightly better “camera” so maybe video aim would be better. Will let you know when I post it. Mt wrist BP cuff reads HIGH though. So, the last reads of 107/70 must have been much lower last time.
Mine said borderline left ventricle dysfunction. I am having hyponeas at night, 17.4 per hour, as shown by multiple sleep studies. I have caught myself gasping as I fall asleep lately. It is like I forget to breathe. When I saw the cardiologist he only had the echo results, not the tilt table results. I need to schedule my blood draw to confirm hyoeradrenic POTS. Should I head back to see cardio after that? Heart disease runs in my dads family so I’d like to avoid following in those footsteps if possible.
DrD, that ball trick is how one ortho doc diagnosed and reset my sacroiliac misalignment when I was 20. He did it with me sitting on the edge of a chair though and I squeezed against his elbow and palm and POW! Shocked me but felt better too. That was a quick diagnosis. I forgot or didn’t realize it could go back out bc it wasn’t until my PT diagnosed right SI dysfunction this summer did I remember that diagnosis 15 years ago. Duh!!!
My current PT resents the out SI joint bt having me lie on my back on the exam table, hold on to table, “out” leg puts knee to chest and then push against him hard. Then he has me flip over and lay on my stomach, bend at knees, he tilts then to “off side” and I have to push back towards center while he provides resistance and holds my right SI/ hip down. This part is hard as hell and the more it’s out the more it hurts. Not major pain, just no strength to push at all.
I have major hip issues too. When I sit and watch tv I sit in recliner to avoid blood pooling (thanks POTS). My legs are NOT straight. They twist and turn from the hip down, femur, shin and all. So, when I sit the most comfortable way is in my recliner with back support behind me (fell down steps a few weeks ago), recliner up, right knee will flop out to 45 degree angle and foot at same angle while femur is only slightly turned, and left knee is at about 30 degree angle but foot and femur are both twisted to outside more (about 45+) degrees. After years of PT with “good” orthos who told me if I just strengthened my legs my knee would track straight I realize they must not have ever looked at my bone structure. The ridiculous bows in my lower legs became very apparent when I got cast for my AFO’s. I should have taken pictures of the casts.
And I agree, no need to compare who has it worse with EDS. That is the best part of finding the herd. You are finally among others who truly understand; the daily struggle, the doctards, idiot family and friends, etc. We get it. Don’t ever apologize.
Yes, FINE bothers me too. I really need to make my shirt design then I can let the measly “profits” collect for my service dog when I finally get one.
My white blood cells were on high side of normal. I’m far from normal though so I think my bloodwork and results are the last persons anybody would want to compare to. I just had a massive upper respiratory infection and not only did my body not spike a fever it dropped temp from my 97.7 range to 95.9. Way to make no effort immune system. Almost had pneumonia and it did nothing. Of course I just THINK about a stressful situation and the mast cells dump my stomach over and lately throw raised red welts on my neck too (aside from my normal fluorescent flushing.)
I think our bodies get so out of whack they don’t know which way is up. Dr Pocinki spoke at the EDNF conference and said to think of the autonomic system as another organ. If one part of it is out of balance, the whole thing is. I think our bodies are trying to self-correct and have gotten so off course that the compass is spinning and the GPS is saying “signal lost”.
How cool! I’m a bit jealous I must say. I found a pretty good eye dr when I had a sudden onset of eye pain last Feb. She is unfamiliar with EDS and chiari but open enough to learning. For example, when I mentioned that pain with side-to-side eye movement is a noted chiari symptom she asked if I had any materials on that. As it turned out I had the Journal of Neiroscience article with me that my neuro refused to look at. She GLADLY took it and was excitedly talking about how she was very happy to have the info and to keepmlearnin, especially across disciplines. Quite the opposite of most docs I find.
So, I’m sure you will be in good hands with the other Dr D as well. (That’s got to be confusing having two DrD’s in one house. 🙂
TMS just posted a new series of videos on their You Tube channel as well from the October convention. I haven’t had time to watch them yet but their info is ALWAYS like getting it straight from the horses’ mouths.
Bilateral TOS, tethered cord for sure, and probably craniocervical/atlantoaxial instability if “expert” will take time to look at films he ordered. Though my head may not have rotated enough to show the instability per radiology report as interpreted by expert NSG. I have “low lying cerebellum tonsils” that are out of foremen magnum by 11 mm on supine and not as much upright but are making a really good cork and blocking CSF flow. Doesn’t have to be a big herniation or any at all to affect CSF flow.
Finding a good doctor for each situation is pretty damn hard. It’s like untangling a 5 mile spool of mangled razor wire. Nobody wants to do it even if you find 1 or 2 who COULD.December 22, 2011 at 12:05 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #1617
I have this as well.