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About p8d

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  1. I have a diagnosis of generalized hyper mobility of the joints that my neurologist gave me as soon as I was diagnosed. I am generally double jointed (used to think my shoulder/elbow thing was a cool party trick, ha!) but I haven’t done the testing because the geneticist is booking out almost a year and there’s no treatment for me. I probably will pursue the testing in the next year or so for insurance/disability.
  2. I get the flu shot every year but it has to be a “dead” vaccine not live. My neurologist told me this and I believe that the flu would be worse for me and make me flare intolerably. My onset was sudden post-viral, not vaccine related. I credit the vaccine with me having a very, very mild case of the flu a couple of years ago. All my able bodied friends that forgo the shot we’re really ill. I flared for several weeks but not too badly.
  3. My symptoms generally are delayed 24-48 hours after I do something like Dr appointments or PT appointments or if I exercise too hard. I am housebound so don’t go anywhere else.
  4. I find this very interesting, way above my present understanding but I will read the information in the links. Please let us know how your daughter does.
  5. You might find this video about APS and dys of interest https://vimeo.com/282536351
  6. Arm placement matters too. I tested a new Welch Allyn automated arm cuff with my neurologist’s automated one and also manual readings and the readings were 20-50 points higher on the Welch Allyn home machine. These false readings made us think I had severe hypertension when in fact it was modest. I had been taking unnecessary medication. Out of 15 readings in the office that day only 1 matched the manual one with a stethoscope. I also was instructed to keep the arm at chest level and out straight and wait 3-5 minutes before repeating it. I have discovered that in my case slight variations in arm placement can raise or lower my reading by 10-15 points systolic. I am now using my Omron arm cuff and will take this to my cardiologist appointment next week to be compared to their readings. I, too, have heard that the wrist cuffs are inaccurate.
  7. I spent the first 18 months of this illness with terrible insomnia. If I could fall asleep I woke up after 4 hours and that was it. I never sent so many emails at 4 am in my life. It was a very, very miserable time. I finally saw a a second neurologist who specializes in ANS dysfunction and he said sleeping through the night would make everything better which I found to be true. Are you on an alpha blocker? Have you been checked for hyper pots? Once I started an alpha blocker, along with mitrazapine, I started sleeping better. Not great but better. 3 years later I still have lousy nights about once or twice a week but overall it’s better.
  8. Oh I am sorry @bombsh3ll how frustrating. When I did my second catecholamine test I was using florinef and wore stockings. This was not on the day of my TTT. We have discussed checking again but this time because I am better controlled and physically stronger I was told I would have to stop meds which I refused to do. Subsequently I had to stop the beta and alpha blockers to switch meds and it was truly awful. Would there be any benefit from checking without stockings to induce the hypovolemia and norepinephrine dump?
  9. I got this device from the pharmacy I originally got my thigh high compression stockings from. It makes getting them on much, much easier. https://www.amazon.com/JOBST-BEI010913-Jobst-Stocking-Donner/dp/B00120238E?psc=1&SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00120238E
  10. I tried several betas, selective and non. The non-selective were a nightmare first time around, 4 years ago. I was very unstable at that time. I was also very sensitive to lights/movements/ smells etc.; traveling in a car was horrible as were tv shows/movies that panned quickly. Flashing lights were the worst. I still have some trouble with very quick panning. The selective beta that helped the most with HR was bystolic. It had almost no effect on BP which was lower at the time. BP has been going up (I am hyper pots and 57 years old) the past year or so so we switched to carvelidol which is non-selective and works great for BP but not HR. For the hyper pots I took methyldopa which had no effect on BP and then clonidine which lowered BP and helped with adrenaline storms, including hypersensitivity to motion and symptoms that you describe but the rebound hypertension was terrible. I am now on guanfacine Er (thanks Pistol!) which helps with the hyper symptoms quite a bit. It doesn’t lower my BP much and doesn’t help HR so we added ivabradine for HR control with no effect on BP. Like Pistol it’s taken years to find meds that address the various issues and constant tweaking and changes as the weather warms up/cools off and my body stops responding to meds. I think that I can handle the non-selective BBs now because I am stronger and need the hypertension control. 2.5 years of physical therapy have helped a lot.
  11. Wow @KiminOrlando how interesting. My Dr sometimes refers to me having MCTD too, he uses UCTD and MTCD interchangeably with me. I didn’t realize that you could test positive then negative for a disease and then have a different one. Freaky. Thanks for the info.
  12. I saw this and thought they said the person had been having PT but that’s only for muscles. I would think that the person would have dys, definitely.
  13. Undifferentiated Connective Tissue Disease (UCTD). It’s a catch all diagnosis when some things come up positive but not enough of any one thing for a definitive diagnosis, at least that’s my understanding. In my case my rheumatologist calls it pre-lupus but also said that at my age if it’s going to morph into something full blown it’s more likely RA. I had more positive lupus antibodies though so I don’t know. I have stabilized on plaquenil and SCIG but I still get flares. I had been checked roughly every five years for thirty years for autoimmune disease and it wasn’t until 18 months post-pots diagnosis and the third ANA in that time that one came up positive.
  14. I get low grade fevers when I am flaring from over doing it and sometimes just for fun (ha!). I get the bad fatigue, malaise, aches, pain feel horrible. I felt this way for 2+ years before my autoimmune disease was diagnosed which was after my pots diagnosis. I still get this way if I overdo anything. My Drs and I believe my dys is autoimmune and I saw my first improvement starting meds for that. Keep asking for tests for autoimmune disease.
  15. Yep, didn’t work for me either.
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