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About jrlehnardt

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  • Birthday January 23

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  1. Yes I believe most that have eds and pots it is just the normal pots, because it is the blood vessels in the legs being too loose that cause the pots for them but the ones that have all three it is usually hyper pots. I just met with dr afrin about mcad and his belief is more leaning that the mast cells possibly causing the connective tissue problems and the ans problems too. But since there isn't any research yet proving it, we just know that the ones that have pots and eds that may have mcad, typically have hyper pots. He said it would be interesting where all this research goes and where al
  2. Yes, the prolapse can be from eds. Some people can have babies and never have a problem down there, others may not have gone through childbirth and have it. I had bladder and uterine prolapse at 23. By 26 I had bladder, rectal, and uterine prolapse. Non surgical options did not work for me. I had to have a hysterectomy to correct the uterus from prolapsing. I also had a cystocele repair to fix the prolapsed bladder during my hysterectomy. After fixing those my rectocele was not too bad , so I didnt have it fixed at that time. My bladder stayed up in its spot up until about 10 months ago
  3. Kris-Not getting in til May is not bad at all. Most of the doctors we end up needing to see have much longer wait lists. Yes I hate when my digestion just stops working. It doesnt matter what I do, it decides when it wants to start moving again. Boymommy3- Tummy problems go along with actually all 3. Eds because the loose connective tissue. So the bowels can get stretche out too much and make it difficult for our digestion to move smoothly (easiest way I know how to explain it), mcas can cause tummy problems if your mast cells are acting up in your gut. Anything you eat that is high his
  4. I am on a high dose right now. My levels were really low, so my doctor prescribed my 50,000 iu, that he wants me to take once a week for 12 weeks. And after that go to a lower daily dose. I have been on it for 4 weeks now, and I havent noticed much of a difference. But that could be because I was not feeling very well at all due to another medication.
  5. Yes, I have 5 kids and they all most likely have eds. Two have already been diagnosed, but the doctors think they all have it. We just havent diagnosed them all. My two oldest are having problems, that I never did when I was a kid. Yes I will let you all know how my appt goes. I already know that all my labs he does, will not all be in for 4 weeks (his nurse told me that). Good luck
  6. Kris- I wouldn't say it is a waste of time. You never know she could be very good. I have an amazing family doctor that had not known anything about pots or eds or mcas but he has been a very important part in my health, so I would still go . PLus with her being local that would be wonderful. If she doesnt know, she still could be amaxing if she is willing to learn. My advice would be to bring a printout of information for her to read about it, it cant hurt. I am in Georgia and had to travel to az to see dr. goodman last year and becasue my pots is still not under controll and parts of i
  7. I have hyper pots, eds and most likely mcad (seeing dr. afrin next week). As for worrying about a pheo and wanting a scan to verify yes or no, I understand that part. I had a number of scans, (mibg, etc. cant remember all the names of them) to see If I had a pheo. My norepinephrine levels were only a few numbers away from being able to diagnose a pheo. What I learned through all of this, is really if you have a pheo, your numbers will be way over the dx number 95% of the time. A pheo has very high numbers typically. I remember when I was going through this, it was such a long road that I e
  8. i have gotten a flu shot for the past few years. i would rather feel yucky for a few days than actually get the flu a few times through the season and be awful for months. each time i get the shot i do feel worse not just a sore arm, but the flu shot this year was the worst one i have have ever had. i think it is because this year i have gone gluten free and low histamine and somaybe with the eggs in it i had a bad reaction. within 10 mins of the shot i felt extremely nauseous and threw up and stayed nauseous and than i got a massive headache that lasted for a day and a half.(i have had head
  9. i used to get those. everytime my husband would have to wheel me into the er cause i couldnt walk. it happened once when i was driving and it was awful and had to pull over. i have not been dx with mcas, but it is suspected. ever since bein on an h1 and h2 blocker those tremor attacks dont happen nearly as often.also i am trying to figure out my triggers, mostly food cause i control my environment pretty well and dont go out much. so i am on a low histamine diet and in the process of doing gluten fre. but whenever i eat something that i find is a trigger, i get nauseous and my legs start doing
  10. well i can not speak for the mn one, but i went to az. i think they are probably both really good. i think you may want to consider travel depending on where you live, maybe the closest. but also try to take into consideration the wait list to be able to get in with them. so maybe call around and find out. theway it worked for me was my cardio electrophysicist referred me to dr. goodman the neuro at the az mayo. but for insurance wise (military ins) my family doctor had to put in the referral . after they received the referral i called and tried to get in, and he was booked and hadnt opened up
  11. arizona girl- you mentioned dr. grubb uses labetatol for his hyper patients and one other drug. if you dont mind me asking what is the other one he uses?
  12. Thanks, i have watched the video. unfortunately florinef didnt do anything for me when i tried it a year ago. i do stay hydrated pretty well except for when i am just feeling way too awful and than i get iv fluids that really helps. I know when i did my labs everything was fine with my seratonin, the only things off have been my norepinephrine being very high and my cortisol being low. the doctors think and have thought for years i am hypovolemic. i have been off and on anemic many times.. i just cant wait til i find the right combination and right dose for me to feel alive again, lol!
  13. thanks everyone, it definitely helps to hear others. i have just not dealt with these low bps before, so i am not sure when to get help, lol. i do have hyper pots. i saw dr. goodman in may and he is the one that has me on these meds right now. i have 5 kids and a husband in the military so i really wait till i am extremely bad to go to the er. i had been feeling bad since over doing it on saturday. i didnt really do anything extensive but i stayed upright all day. i have been almost in bed constantly for the last year and a half and have just been getting more active the last few months. i wa
  14. Not really sure if this is ok, or if i should do anything about it. I have had pots for 6 years so i am used to feeling awful and not going to the er or making a big deal out of stuff. i have been on propanolol and midodrine for a little over a month. it has lowered my heart rate from 200s to 120s standing, and 100s to 70-90s laying down and my bp has always been normal or dystolic being a little high but since being on the beta blocker and midodrine it has been 90/60s but when i am active upright i start having high bp. my bp hasnt changed with me taking either 3 midodrine aday (5mg) or takin
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