Jump to content

bellgirl

Members
  • Content Count

    1,072
  • Joined

  • Last visited

Community Reputation

0 Neutral

About bellgirl

  • Rank
    Advanced Member
  • Birthday 02/13/1957

Profile Information

  • Gender
    Female
  • Location
    Huntsville, Alabama
  • Interests
    Singing, dancing, hiking, horseback riding, swimming, walking my dog, writing poetry, researching medical topics, and encouraging others.

Recent Profile Visitors

2,754 profile views
  1. @rje11 I had a wonderful neurologist in Birmingham, Dr. Riser; he worked with me some, but usually took care of MS patients, and didn't know enough about Dysautonomia, but he was my favorite Doctor and was willing to learn. He let me talk until I was done asking questions and adding what I had learned with him, however, and was very empathetic. I also went to Dr. Phillips at the Dysautonomia-MVP center in Birmingham mvpctr.com, and she was great knowing what meds I needed to keep me stable; she did my first echo, stress test, EKG and TTT. She diagnosed me with Dysautonomia/MVP/POTS, and dealt
  2. I have Autonomic Vertigo. There is nothing wrong with any of the vestibular testing that was done. I had at least 4 tests. My doctor specifically did a thesis on Autonomic Vertigo, and no matter what medication I am on, I still have it. I'm not as nauseated, dizzy, misjudging curbs, as I did when I was first diagnosed, but I do take zofran on long trips, and that does help. It hits when I least expect it, and yes, it's like fainting without passing out, to relate to what you are talking about. I broke my foot last year, falling backwards off a retaining wall. I did a 180 degree in the air, and
  3. Yes, I get the "ify" part; to top it off I only had 5 days of the Doxy, so I'm not convinced I'm rid of it either. My Western Blot was done in 2011 before my bulls-eye, and then I had it done again, but it was way after, as well. Mind you, I've had other tic bites that were inflamed, too, that I was also treated for Lyme with antibiotics. Now the CDC does more thorough testing, which I never had done, but kind of wish I had done it, back when I had the bulls-eye. My Western Blot was done in Birmingham at reputable labs, but I'm still skeptical, because my results were just on the border, and t
  4. What testing did they do for Lyme, Issie? Because I live in the woods and not only found tics on me, but had the bulls-eye rash once. I even have pictures of it!! I was treated right away with doxicycline, though, as a preventative, but I still become fatigued and am limited to a degree, but not as bad as I used to be. I'm also older, too, so sometimes that could be why I'm not as energetic as I used to be before all of this!!
  5. They are medical doctors. I went to Dr. Phillips, and liked her, but since she was about a 2 hour drive both ways for me, I now have a cardiologist in Huntsville, who also has diagnosed POTS. They can recommend nutritionists, and other physicians, but I go to a homeopathic doctor, who is also a medical doctor here in Huntsville, Dr. Calvert, through his business Renue. He uses metabolic code to figure out where you need to be with supplementation and all the supplements are American made. I'm on aged garlic, and high doses of niacin for my high cholesterol. I take a lot of supplements, antioxi
  6. The doctor's at the Dysautonomia-MVP Center are Dr. Susan Phillips and another woman Dr. Paula Moore, too; Dr. Watkins, the cardiologist is no longer there. He had to retire due to medical issues.
  7. Yes, Issie; there is the mvpctr.com Dysautonomia-MVP Center in Vestavia Hills, Alabama; I went there for 7 years, but once I found a Cardiologist who diagnosed POTS in Huntsville, where I live, I left. They diagnose, and manage medications for Dysautonomia, and have good recommendations for other doctors in and around UAB for other issues; I hear there is a neurologist at UAB, who is an autonomic specialist, who is taking appointments, but there is a long waiting list. His name is Dr. Kazamel. One girl, who just made an appointment is going to see him in May. Vanderbilt also has autonomic spec
  8. To be honest, the doctor's don't know much more than we do about this disorder. All of us are very informed, and everyone has these disorders for different reasons. That's why I believe it is so difficult to diagnose. If you don't have any more than your typical blood work, doctor's are not going to pick up on the symptoms. I had a Cardiologist tell me there is no treatment for POTS, (I supposedly have PAF, too), at which time I shared that my doctor treating me for my Autonomic Disorder has helped me have a much better quality of life, because of the medications I'm currently taking!! That's
  9. I was 41 when I had a virus, then my symptoms became progressively worse...very low blood pressure, very high blood pressure, then high cholesterol, binocular defect, swelling on right side along with heaviness, and neuritis for about 5 years. After going to all the right doctors, Cardiologist, Neurologist, Rheumatologist, ENT etc. I gave up in finding a proper diagnosis, until my symptoms of dizziness/vertigo crept in, horrible insomnia, heart arrhythmias, feeling faint, heart, and "coat hanger" pain, etc. After 3 years of this, and wrecking my car twice, I decided I was desperate! I found an
  10. I personal messaged you, Amanda. I think you will like Dr. Phillips. She is very competent, and you will receive good care there. Let me know how your appointment goes. Do you have a good Primary Care Physician? You will need one of those, too, so you can get referrals in your area. Most of my doctors are in Birmingham, but I'm happy with all of them. It is about a 2 hour drive for me, and my vision has been lately, also I get motion sickness, so my husband has to drive me. Now that I am more stable, I don't have to go as often, until lately with my vision, but as I said in my message,
  11. Sorry, Bustersacc11, I'm just repeating what I have been told from another who went there who I know, and they didn't offer any treatment, and told her that she would have to find a doctor elsewhere for treatment and that they only did diagnostics and research there. It's happened to several on this site in fact. You must be special. Do you live in Tennessee? That might make the difference....
  12. Issie, I am still very happy with Dr. Susan Phillips in Birmingham. They only treat the dysautonomia, not other problems that go along with it, though, so she would need to see other specialists, too, but she is very knowledgeable about treatments, meds, and if you need blood work, they do that too. They told me to take my B/P med I was already on before testing, although I wasn't on a Beta Blocker at the time which definitely would effect heart rate on a TTT. She started one med at a time, so she could see the effects, and now I am so much more functional.
  13. I loved licorice even before I knew I had POTS....hum...our bodies do take care of themselves. Thanks Rama...interesting
  14. Dr. Watkins...sorry misspelled his name!
  15. Hi, I also go to Dr. Susan Jane Phillips, at the Autonomic Disorder/MVP Center of Alabama in Birmingham, and she is wonderful!! She spends time talking with you, answers all your questions, ( I emailed her a picture of my dilated pupil once), and she is willing to work with different medications to get you balanced. I've been on 2 different Beta Blockers, and have increased my clonazepam, and if that doesn't help, I'll try a SSRI next. I had the same gammet of tests EKG, Echo, Stress Test, and Tilt table. In the last year I've been to see her 4 times, but it depends how you are doing as to
×
×
  • Create New...