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KiminOrlando

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Everything posted by KiminOrlando

  1. Does anyone have Small Airway Disease? Is this part of dysautonomia? Is this part of my autoimmune issue? Do other people with that nebulous autoimmune diagnosis attributed to dysautonomia have this? I tried a search on here but I couldn't find anything and kept getting timed out. Thx.
  2. My eye doctor told me the original warning on Plaquenil was the old formulation. The new formulation, which is used almost exclusively now, has almost no statistically noticeable difference in retina detachment as people who are not on this drug. He said it probably shouldn't have this warning any more but it is almost impossible to get one removed since technically it is the same drug. Reformulations aren't considered new drugs. The recent hysteria over this drug may have been from conflating chloroquine and hydroxychloroquine. For reference, my dose is 200mg of hydroxychloroquine twice a day... for 15 years. My understanding is that this is standard dosing for an adult. Your doctor may choose something different for you. If you have concerns, feel free to send me a msg and I'm happy to discuss my experience or your concerns. This med really got a bad reputation recently.
  3. I fully believe this is a fact. I have been on Plaquenil for 15 years and the more treatment I get for my autoimmune disease, the better my dysautonomia gets. I have proven to have Rheumatoid-arthritis with blood work, but the Rheumatologist does not call it that. He calls it Undifferentiated Connective Tissue Disease because he thinks it is something else that doesn't have a name yet nor a specific blood test. It also has bizarre lung involvement. My blood work has also been positive for lupus, but now it has disappeared. They think this is somehow relevant, but aren't sure how. I truly hope this is further researched. Also, if a Rheumatologist offers further medication to treat an autoimmune disease, it may be worth considering to see if it makes your dysautonomia better.
  4. Mine says I don't know a lot. I would send you to him but he is retired and only sees 3 patients for research purposes. This doctor taught me that good doctors aren't afraid to say they don't know. I hope you find someone like that.
  5. I think they reject us when they don't know how to help us. The secretary that told you that likely didn't have the authority or the knowledge base to make that declaration. She probably just said something to get you off the phone. Some doctors even look for a specific kind of dysautonomia or they won't treat you. Some won't treat you if there are other medical issues complicating dysautonomia. You were likely given an excuse, not a medical diagnosis. This is part of the process of weeding out the wrong doctors. This one may be good, but not the right one for you. Keep looking. You will find the one interested in your case.
  6. @p8d It could easily be the tea or something else. My issues can be delayed. For example, I put color on my hair. I get an allergy type reaction, but 2 days later. Somehow the process triggers histamines that eventually build up, but it isn't considered an allergy by an Allergist. This happens with several things. Too much noise, too many people or too much movement also triggers my vision to get very fuzzy. I think delayed reaction is very possible.
  7. @Derek1987 You're kidding! My right leg is bigger too. I thought it was my imagination for a while, but now I am having trouble with pants being too tight on that leg, but not the left. I don't even know what kind of doctor to talk to and I feel like they would just tell me to lose weight... sure, I'll take a spin class then join a crossfit gym...
  8. Fludrocortisone helped me. I hope it helps you. It didn't 'cure' me, but it made things better.
  9. If you are considering Mayo, I strongly recommend the one in Minnesota, not Florida.
  10. Derek, that sounds horrific! I think a hospital stay after surgery is a good idea. I have trouble maintaining my bp for about a week after surgery. If they can keep IV fluids going and maybe monitor you, I think you will do better. They may end up using some type of steroid during that time to get you through. That is what they do for me. Are you taking fludrocortisone? My doctor has me increase that a day or two before surgery. Also, your throat will be very sore and you won't be able to drink as much fluids. You may even need IV support after you're released. Sounds like your doctor is on top of it. Good luck with your surgery.
  11. Mine works the other way too though. You know those sappy coffee commercials where the young man surprises his parents by coming home from the military very early Christmas morning and he wakes everyone up by making coffee? They come down stairs to the smell of good coffee and their son. I cry every time. I'm starting to cry typing this. MAKE IT STOP.
  12. Read the fine print. I don't think Nurse Practitioners count as qualified medical professionals. Mine didn't but maybe they changed the rule. I really hope they changed that rule.
  13. This is me too. I'm also triggered by loud noise. My parents can't hear very well and won't get hearing aids. They are visiting now. They do not understand how this bothers me. The tv is LOUD.
  14. Just a follow up. I got the flu shot October 29th. I take fludrocortisone. I have not had a flare. But everyone is different. I'm hoping flu season is less this year too because of masks, increased attention to hygiene and social distancing. Time will tell. Hope everyone is 'well'.
  15. Do you mean the spread between the two numbers in your BP? Mine is that low but I was told it was no big deal. Now I'm curious.
  16. I also have a hobby of organizing closets. I pull everything out and sort out what needs to be donated, then put it back in. One closet takes a month or so. It makes a huge mess. I don't recommend it. 🤣
  17. I learned to crochet. I do cross stitch. It takes a long time and sometimes I have to put it up for months. I'm working on a huge project and it is taking years. I haven't had it out in a while but hope to pick it back up soon. I also picked up playing hidden object games on my Kindle Fire. It seems to be helping with my memory and my attention span.
  18. So, Hematologist has been wanting to do a bone marrow biopsy for 2 years. I have been resistant. Should I let him if he still wants to do it? They can check Mast Cells there, right? What kinds of tests should we be discussing?
  19. Saw the allergist. He said MCAS is very rare in people with concrete diagnoses that can be quantified with tests. I have Rheumatoid-arthritis. This is why he doesn't believe I have it. Thoughts?
  20. Get copies of everything. It will take time to absorb the info. So much will be thrown at you at once.
  21. You need a Pulmonologist, it sounds like. They may need to run a Pulmonary Functions Test so they can tell what is going on and they may get a high resolution CT. I have what you are talking about and my DLCO is 56% of 'normal'. It is my understanding that it has to do with the gas exchange, ie getting it from the air in your lungs and in to your blood. Also, O2 attaches to red blood cells, so if you are low or your bp is low, it doesn't circulate O2 effectively. My advice, try a Pulmonologist.
  22. Technically aldosterone is produced in the adrenals. Does your kidney doc also treat adrenals? You may need an Endocrinologist.
  23. Just tell people it is a very real possibility and if you start to feel like you are going to faint, don't push it. You may have considerably less time between the warning signs and loss of consciousness. I won't make that mistake again.
  24. I have hyperPOTS. I hope you don't have the same trouble.
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