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Everything posted by kay1964

  1. I live in south Carolina and i got it based totally on pots,even though i now know i also have heds.I first applied was denied than obtained an attorney.from the time i applied to getting it a year and a half.
  2. Hi circuscat, I agree with katybug,i have similar story to yours that's why I spend some of my time on a Inspire forum.I at 50 got my diagnosis of HEDS which is elhers danlos III. Dr Blair Grubb Finally diagnosed my condition behind my pots and dsyautonomia.Vanderbilt university in nashville Tenn,in 2007 diagnosed my pots and dsyautonomia.Dr Grubb in Toledo Ohio in 2014 diagnosed my heds.Because i do suffer with pots and dsyautonomia i love my dinet.org forum,its very informative. But because i also suffer with heds i find inspire informative for that.much prayers to you to
  3. Becia, sending lots of concern thoughts and prayers your way.
  4. Story, I too have suffered my whole life, symptoms have progressed through the years.because of child bearing, surgeries, to stresses of work, and stresses of life.unfortunately I was not aware of how sick I was at times and pushed beyond what I had and caused more damage. But fortunately I knew through all my symptoms and diagnosis and test we still where missing something. The sleeping issues have always been there, last 6 to 7 years symptoms have developed into these surges.remember too menopause brings about for some worsening of their symptoms. So the last 7 years I have the shadow of men
  5. Hi story, no did not have to do tilt table for dr grubb, because I have had four since 2007 all four never changed they showed i did have pots.how ever that was always one of my symptom as doctor Grubb said, my primary problem was heds.he did not have to order or do any test because before going to dr grubb I brought all my records with me.he knew rite away I had heds.my doctors from my cardiologist, to my neurologist, to endocrinologist, and my gastrogoloist,gave me my records from all the test they performed, along with dr raj records from vanderbilt university. So I had alot.dr grubb did pe
  6. Story,i recently just got home from my doctor vist in toledo ohio.i too did not tolrate betas,we are trying knew one Bystolic 2.5 once a day, (i cut even that dose in half)i am very very med senative.Dr Grubb says it is a relatively new beta-blocker that is most beta 1 selective agent currently made has far fewer side effects and dose is once a day.also for me it is pill form i can cut into.no extended release.dr grubb said take as i could tolrate it.so far i have been doing ok i don't take it everyday,but what i take is helping surges at nite and my increased heart rate.so far it's the only m
  7. Thank you blue, really means alot to me.everyday is one more day behind me.
  8. Thank you raisin, God Bles you too.Thanks for your healing words.
  9. Thank you, I know time will be my friend but today my pain of loss, is great.Me and max had talks he was going to out live me.I know that sounds crazey, but my illness and symptoms have brought me too such pain and helpness that on bad days I felt my time is limited.My max's comfort is what pulled me through.Suppose to go to Dr Grubb, in sept don't know how my mind can focus. My family is grieving as well and they like me loved him so much.agin thanks for taking the time out to express your condolence on my loss.
  10. Words are so hard to find to describe my max.He was a resue. I'v had him since he was 8 weeks old.His legged was injured beyond repair, local vet called asked if I good take him.and of course I did.He was a boxer with a tail and his ears still and we left him that way.I'v talked of himin one of the post on the forum, because he was one of my coping skills for my illness with dsyautonomia. He was so in tune to me.everytime I cried whatever he was doing hecame over and had to stay beside me until I was done, even then he would whatch my eyes intently to make sure I was ok.about a month ago when
  11. Fifty, and waiting.Nope still sick.
  12. Hi, faintinggoat my appointment is on the 12 of September.I to tried florinef but could not tolerate the more headaches that it causes for me.I have had pots all my life i now know.from being diagnosis with mitral valve, cfs,to panic attacks, to hypoglycemia, to low levels of vitamin d, tmj, servre dry eyes, list goes on and on.I went to Vanderbilt for my confirmed diagnosis, in 2007. That was helpful for that, but not for long term treatment and what i overlap. I have known my dsyautonomia runs in our family no one has stepped up to have it diagnosed. I really believe we will be looking at el
  13. Hi misstraci, I too had test done for Gastroparesis I was able to eat oatmeal. My test showed delayed gastric emptying. My gastrogoloist did not feel the benefits taking the meds would out weigh side effects of the meds.I'm not tolerate of meds.as well delayed gastric causes med build up.maybe meds will help you.test worth getting if you can.I too take zantac when build up is bad.also small small meals.no beef and whatch gluten.
  14. Hi, faintingcoat.I also got my phone call from sherry at Dr Grubbs office.I'm going in sept.I have been to vanderbilt in 2010, some help but not enough.A good friend of mine goes to Dr Grubb, once a year for her pots.she even made a u tubevidoe with dr grubb.Sherry from dr grubbs office reminded me his wife is very sick.but he is still very dedicated to his patient's and will spend 2 to 3 hours with them if needed.She told me to be patient because there is an appt ahead of mine.it will be a ten hour drive for me so I'm very anxious. My loving husband will do all the driving but unfortunately I
  15. I too really like this forum. It's a very close net group of people and patients.they are very careing and are truley concerned for those who are suffering. Just when my own depression, or negative thoughts come to my mind, on my bad days, I log on line and start reading things others are experiencing, or what makes them feel better or what makes them laugh. And my own spirit is lifted. thanks to all that make this forum possible, the awareness to the medical conditions that is talked about benefits the suffers, the family members who support them, and the medical community, so agin thanks:)
  16. I'm knew but read your story and the link,My prayers are with you.will be waiting to hear how all goes.
  17. I too love this thread.:)you know you have pots when you have to desribe the word to others that you want to say but can't figure out on your own.
  18. Sorry reading post on my phone while i am out.seen your whole post so picc is not surgically done.please let us know how you do.
  19. Thanks,the reason for me port was considered i too can not seem to get hydrated enough i have very low levels of renin and aldostrone.i receive fluids just for hydration about once a week.have to be careful with salt tabs in gi tract.could not take florinef.summer hot here in sc.trying to keep cool and hydrated.feel so much better with being hydrated with i have infusions i can never hydrate myself on my own.is there a reason a picc line for you is being considered instead of port?
  20. My neurologist today suggested I consider a port.Problem being my dyhradtion.Like I discuss with him the hydration I get from iv fluids non comparison to me trying all day to drink enough to feel hydrated. Right now I have an infusion center my doctor sends me to when I need it.which I would go every week but unfortunately my veins are getting bad and it gets painful.so any one with any input I would most appreciate. Sorry in brain fog it's the end of the day,just had infusion of fluid today, only because I had procedure done today that my doctor felt I would do better with if I were hydrated.
  21. I have a three legged boxer I saved 9 years ago doing my animal wildlife resue work in sc.I became so ill had to give it up.I hung on to max as I call him, and my adopted autistic daughter who is 19 now got her at 9 months old.in the beginning, I might have been saving them but now my faithful boxer max, and beatuiful daughter save me.My max whatches over me and my daughter when I need to be resting and on my bad days he knows I need her whatched over, and he sticks close to her.And on nights which are everynight that I am awakened by my illness he gets up with me.he won't move in morning's un
  22. The young girl that interviewed Dr Grubb, for her school project, is a good friend of our family.She lives in our area.she is the one that encouraged me to seek out dr grubb.i meant this wonderful patient of pots 4 years ago.it was hard for me to follow the video also.sorry I'm no help.she is a servre patient.has had implant put in chest so dr grubb can follow her closely.
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