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  1. I had an X-ray, ECHO, V scan for pulmonary embolism, blood test for allergies, breathing test for lung function. My lungs function at 56%, way too low. I am on antibiotic now (for possible infection), asthma inhaler, and motrin twice a day, which helps bring the inflamation down. Allergy meds didn't make a difference. I am better on azithromycin, but almost finished with it after 2 weeks. My GP is just trying meds but has no idea what is going on. She said, if it doesn't go away after antibiotic treatment, I need to have bronchoscopy done. At this point I don't think I can avoid it. My Lyme test was indeterminate, but can breathing problems be a symptom of Lyme?
  2. All the best for the surgery and appointments. It's great you found a dental surgeon that is aware of your condition and can manage your care. I need dental work badly, but keep postponing it. My dysautonomia started 2 days after a dental surgery, so I'm scared to go back to the dentist. Will have to, one day.
  3. The link worked for me. Thank you. I had a few biofeedback sessions, and I find it helpful sometimes for heart rate and temperature regulation. My biofeedback therapist himself had dysautonomia.
  4. My pupils do strange things at times, from getting huge during an episode, to pulsating, to dilating unevenly. It is often noticable at night, my left one dilates normally, my right one stays small. However, on at least 3 occasions, my right one dilated and stayed like that for several hours. I noticed, because my vision was off. I had a CT scan, MRI, and was told it's because of dysautonomia. I've seen a neuro-opthamologist, but my regular opthamologist was most helpful. He said no nerves are damaged in the eye, but my right pupil is also not exactly round. They were perfectly normal before dysautonomia, so I'm sure it is related to this condition.
  5. Thank you, Janet. I feel like I'm on the right track. I am so happy I finally found a doctor who has some knowledge about MCAS and dysautonomia, and is willing to test me, and try some treatments.
  6. I traveled to Minnesota from Florida. I had 3 appointments scheduled: GP, Dysautonomia Clinic and TTT. They were from 4 days to 3 weeks apart, with my tilt table being the last one (but they couldn't see me without ttt results in Dysautonomia Clinic anyway). I went to my first appointment with GP and then I went every morning to sign a stand by list for that day, for TTT, and later for Dysautonomia Clinic. If someone doesn't show up, they call people from a stand by list. You just have to be on the floor when the beeper goes off. Because of that, I spent most days entirely in the clinic. It was good to have my husband with me, he could go, get us something to eat and drink while I was waiting. I managed to do all the appointments, TTT and blood tests in 5 days and we left for home the day of my last appointment. We stayed at a nearby motel. Most of them have free shuttle service to the clinic.
  7. Thank you for the articles, Katie. Great find! I am waiting for blood test result for allergies, having a flare, suspected MCAS, and just diagnosed with asthma. I am also highly allergic to environmental/inhalant allergens. Some more tests to ask about.
  8. I was told that H1 and H2 blockers work better the longer you are on them. After one allergy doctor said I am too complicated for him to treat, I found a great allergy/immunology specialist. If anybody in Florida needs one, PM me for details. She did her residency in Boston clinic for mast cell disorders. I've seen her yesterday, she ordered tests for MCAS and said it is very likely I have it. I am still on Singular, Pepcid, and she encouraged me to try Allegra. I also got a prescription for an epi pen. My flares come in late summer/fall (it's my 3rd one). My lung function test actually came positive for asthma. After using an inhaler, my breathing is better today.
  9. I think it might be. It's interesting that after several hours in the hospital my breathing improves. But they switched me to a new room and it was just cleaned with bleach wipes, it made me nauseated, breathing got harder and my blood pressure dropped. Andy, do you take any meds for MCAS? Anything to improve breathing? Solu-medrol improved mine, but I got a reaction to it (tachycardia, rash, body temp. drop), I don't think I want to try it again. Maybe another steroid in a low dose. The nurse said I got a large dose. They put me on Singular and Pepcid for now.
  10. Thank you, looneymom. I just spoke with the doctor, and he says, mast cell disorder is a very possible cause. They will put me on singular and another mast cell blocker (so far they haven't decided), but won't do tryptase or any other tests, because, he said, they wouldn't know what to look for. I'm waiting for ECHO results and they did basic allergy panel done. I will be trying to get to a specialist asap. Hopefully getting closer to the end of this puzzle.
  11. I was doing quite well in the controlled environment of my home, for several months. Sure, I coludn't handle Florida heat in the summer, so shopping was done early mornings or evenings, but I got used to that, too. Only at night I had an hour or 2 feeling strange, some sinus swelling, but I kind of got used to that. No crazy episodes since January 2014. 5 weeks ago I got stomach pain, sore throat, painfull sinus, headaches, chest tightness, trouble drawing deep breaths. 2 weeks ago my doctor put me on antibiotic and the symptoms were getting better except chest thightness and pain, and inability to draw a full breath, unless I lean forward. My GP got concerned and ordered several tests for pulmonary embolizm (ruled out), ECHO for bulid up of bacteria in my heart (had a rheumatic fever as a teenager), some blood tests. She also suggested antiinflamatory drugs and presribed methylaprednisone, which I didn't take, afraid of my body's reaction to it. So going back to when my dysautonomia, started 2 years ago, my first episode of tachycardia, blood pressure jumping all over the place, dilated pupils, frequent urination, temperature dysregulation etc. happened after a dental surgery and massive dose of Advil my dentist prescribed. My episodes became a regular occurence and my dysautonomia and OI where horrible for several months before gradually improving. I also started having red spots on my face and chest during some episodes. Suspecting mast cells, I took Zyrtec and Zyntec last January, and that gave an episode 20 minutes later. I tried to contact dr. Afrin, but he wasn't taking new patients then, so it was left at that. I tried to get an appointment withh dr. Akin, but they said unless I have an official diagnosis, they won't take me. Now, back to today, typing while in the hospital bed waiting for my ECHO, tonight in ER they gave me a steroid and boom! 20 minutes later I got an episode. The familiar weird feeling, red spots all over my face, neck, and chest, tachycardia, big pupils, tremmors and chills, and peeing a bucket full. It took about an hour for my body to calm down, then it was my time to take a dose of antibiotic. I took it, haven't had a reaction previously I thought it was safe. 20 minutes later, weird feeling, heart rate 120 and red spots again. If that's not a proof, I don't know what is. Now I wonder if my breathing problems are also mast cell related. So, exhausted right now, I wanna cry. I only get some relief when I lean forward, so I have been trying to sleep like that and sit in some weird positions. They said if there is no infection of the heart they will most likely discharge me tomorrow. Please, can you advise me what specialst can diagnose me. I'll try to stay in the hospital and ask for addidtional tests. Can't go home like that, I am so lost now. How did you get diagnosed? Is dr.Afrin seeing patients in his new location? Any advice is greatly appreciated.
  12. I watched dr. Driscoll's video a year ago and immediatelly checked if I had moons. I had only one, on my left thumb. Now I have them on both thumbs and tiny ones on my index fingers. I used to have them on all of my fingers just few years ago. I also have vertical ridges on my thumbs now. My vitamin B12 is normal, thyroid is ok, too.
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