Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Roxy

Members
  • Content Count

    73
  • Joined

  • Last visited

Community Reputation

0 Neutral

1 Follower

About Roxy

  • Rank
    Advanced Member

Profile Information

  • Gender
    Female
  • Location
    North Carolina
  • Interests
    Reading, baking, medical and historical research, genealogy, and movies

Recent Profile Visitors

932 profile views
  1. They checked for APS or sticky blood many times, I am always just inside of what they say is normal range high or low depending what version of the test they do.
  2. Yes they have been testing me for many years and can’t figure out what is going on. I always seem to be a little high or a little low on the tests. I think my normal does not fall into the ranges they have/use. It is that way for almost everything with me. Glad to hear how well the infusions/port is working for you.
  3. Anyone else have issues with blood clots (DVT, PE, TIA). Doctors are having trouble figuring out the problem, one minute I am clotting up, the next I am Practically bleeding out. I was not on any blood thinners or other medicine to help clot.
  4. I have stomach dumping and gastroparesis, depends on what the POTS and NCS are doing at any one time as to what my GI is doing. I have one medicine that helps when the pain get pretty unbearable it is hyoscyamine, you could check and see if your doctor thinks it might be worth trying. Good luck
  5. The port can also do what they call migration/migrating, why not just tell us it is shifting, moving from its original placement. I had that happen and they had to finally do X-rays to confirm it. It really really hurt, they went in and placed it back where it should be and now it is wonderful. I do get a little pain from scar tissue rubbing but so much better than all the needle sticks in the arm, leg neck, groin... I have also had blood clots and been on blood thinners.
  6. I have had my LINQ ILR for around 2 years and it has been a god send. My doctors have been able to see everything I was telling them was happening but sounded unbelievable. The placement of it was relatively easy, I had to have general anesthesia because I am alllergic to locals, I would do it again in an instant. Good luck
  7. I have found CBD oil to help, if you try it it must be the all cbd oil so that it is legal in all 50 states. If you are lucky enough to live in a state where marijuana is legal it will be easy to find a good quality safe cbd oil, otherwise due your research on the supplier you buy from. Please check with you doctor before trying.
  8. Gabapentin is no good for me but it works great for my son.
  9. I have both stomach dumping and gastroparesis it just depends on what my body says is going to work or not work at any given time. Sorry you are having these problems, I would make sure to get with GI doctor for testing. Good luck
  10. I have what sounds like something similar, we finally figured out that I am allergic/sensitive to the material or the gases given off of a lot of new materials especially if they are synthetic. Hope you figure out what is happening/causing this issue.
  11. It was a long hard battle that took over 7 years but finally I have it. Yes I am happy but equally sad that I am now officially disabled. I had the help of wonderful doctors and my lawyers, I only hope that as more and more of us get our benefits ( hoping less and less of us will need them as they find out more about dysautonomia) that it will be easier for others. I am glad for the ones who have a shorter battle than I did. The comments I heard most were you are to young, your husband makes good money, you are not really sick get a job, and you don’t need this let sick and old people get theses benefits. Crazy that was from people working for social security. I would love to be able to work and feel productive instead of basically living in a hospital or feeling home bound like I do. Sorry everyone I needed to vent and say yes I finally made it, one less stress off my list. Good luck to anyone going through this system.
  12. I get fluids before surgery and they use different types on me depending how deeply and how long I am under sedation/anesthesia. I know they use propofol for lighter sedation on me not sure what the others are.
  13. Google pots blogs and ports/IV therapy you will find quite a few people that have had ports put in and IV saline used. You might be able to use some of the info from the blogs to help your case with your doctors. Good luck
  14. They have swimsuits similar to wet suits that give some compression on the internet. I tried swimming but because of my issues I must have someone with me because I may pass out, so not an ideal option. Glad that you found something that works for you, it may be an option for others as we know what works for one doesn’t always work for another.
  15. I set myself reminders or a timer to drink, eat and take a break. I get going and forget, then pay for it over the next few days after over doing it.
×
×
  • Create New...