Has Anyone Been To The Autonomic Disorders/mvp Center Of Alabama

[jrlehnardt]

I was just wondering if anyone has been to the autonomic disorders MVP center in Birmingham Alabama and seen any of their doctors? Would you recommend them? Do they do adequate testing? Do they just dx you or do they also treat you? I have pots and I was trying to find a closer place to go. Also does anyone know the wait time to get in?

[bellgirl]

Yes, yes, yes. I was referred by an ENT Dr. Pappas Jr. in Birmingham, affiliated with St. Vincent's and was seen in 12 days. They didn't do any blood work, there, but I had an Echo, Stress test, EKG and Tilt table. I've received good treatment there, medications, fluid loading, salt, exercise, etc., but I still don't know the root of my problem. The treatment is working for me, so I am satisfied. Dr. Jane Phillips is my doctor, affiliated with Trinity Medical Center. The head physician there is a cardiologist, Dr. Phillip Watkins and wrote a foreward to a book, "The Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide" written in 2002. I was sent to the Sleep Disorders Center of Alabama by them; I also have sleep apnea (Dr. William Adams from UAB), and my neurologist is Dr. Riser from Brookwood Medical Center and he did a lot of blood work, to rule out other issues, MS, Lyme disease, autoimmunity issues, and also had an MRI and MRA, since most of my symptoms are considered neurological. They are all good physicians, they listen, spend quality time with you, answer any questions you may have, and are very professional...

[derekliz]

I have been there as well and while I was very happy with the staff and physician, they were not willing to try to even look for the root cause (if there even is one) They did the U/S, EKG and only a 10 minute TTT (while I was taking the BB) right in the office and everyone was supersweet and Dr. Phillips was very inofrmative.

I ended up contacting another physician, and he and his nurse are AMAZING!! Talked to me for over 45 min before I made my appt. She mailed out a form from Vandy and some other forms and once rec'd, they called to schedule my appt. You have to be off any meds that affect your heart rate for 3 days prior to testing.

I had a 45 min TTT and EKG and they drew the standing norepinephrine (the tech actually has pots so we spoke alot). Once at their office they did the Ultrasound. Good Luck!

Liz

[derekliz]

.

[CharmedLinz]

Yes I see Dr. Watkins at the Prolapse Center.

My Cousin was diagnosed by him 14 years ago, and then I was in May 2010. I live in NM so it's quite a drive for us, but he only requires you seeing their office 1 time a year to stay as a patient.

The first appt I had all the testing done here and took results to him. He spent about 3 hours with us and diagnosed me with Dysautonomia and Neurocardiogenic Syncope.

He sent me home to follow Dr. Grubbs protocol of Florinef, SSRI, and Klonopin.

Saw him again in November 2011. Had a new month long halter monitor recording for him. He diagnosed POTS. Did his own stress test which was ok, and his own Echo, which he found MVP and regurge which wasn't found here locally.

They will NOT address any other issues regarding dysautonomia. It is strictly from the Cardiology standpoint.

Dr. Watkins is great, the nurses are wonderful, and the front desk staff is like family.

They can usually schedule within a month.

Good Luck!

[issie]

Good to know there are good docs in north Alabama since I have family there and am from there myself. If I need a doc while visiting nice to know there's someone close into B'ham.

Issie

[issie]

Are any of you still seeing docs in or around Birmingham?  I will be moving there and need to get established with closer to me docs.

Issie

[bellgirl]

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 specialists, too! I hope this helps. Coming from Arizona, where some of the best doctors are there from Mayo, Vanderbilt and Mayo work together!! I hope you are doing well!!💙

 

[issie]

@kimbellgirl thank you for your reply.  I'm not looking forward to having to get new doctors,  as I'm really happy with the ones I have here in AZ.  But need to turn the page, with the move, and go with it.  My docs here weren't aware of anyone personally.  But I've had a few recommended and have a place to start interviewing.  Good to know some names and not move there completely unaware if there were to be an emergency. 

Issie

[bellgirl]

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.

[issie]

Which of the two did you like better? You know I lean more alternative and not RX medicine.  

Issie

[bellgirl]

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, antioxidants, vitamins and minerals, etc. I also take a natural vegan energy drink before going to the gym. I also watch my diet. I just recently took an  advanced probiotic, with prebiotics, too, and it really helped my GI tract. My hematologist ordered it for me, as I went to him for anemia and my iron binding capacity was also abnormal, but now all is well on that front. It was prescription strength probiotics. I'm also on bio-identical hormones, too, so I'm feeling so much better. I've decreased my doctor base to 5 instead of 8, so I'm happy about that. If I need a neurologist, I'll find one in Huntsville, too. But right now I'm good.😃

[issie]

Nice to hear you're better.  I like Hunstville. We looked around up there. But will have to be south of B'ham doing parent care. Maybe later.  Nice you found good docs closer by. 

I don't do typical POTS treatments and prefer functional medicine.  As I don't agree with what most docs do for POTS.  But I do need to have someone who at least knows about it if I have an Emergency.  

I'm better too.  Been a long road of discovery.  Found out I have CIRS and Lyme.  Treating those has helped sooooo much. Still have MCAS and issues with EDS.  But over all doing better. 

@derekliz - who do you see?

Issie

 

[bellgirl]

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!!

[issie]

Testing is so "if'y".  We did a Western Blot.  I came back with positive co-infections.  I also had the red circle.  But I didn't get tested or treated until years later.  Doxy. Did not work for me.  My doc had seen symptoms so much and doesn't feel test are accurate - especially if there are autoimmune issues.  I see a Naturopath and she uses various herbs in a certain order - based on symptoms and response. We also treated CIRS at same time.  I had all test for CIRS.  Including genetic testing.  All which were very positive.  I'm still having problems with both and probably will be a maintenance for the rest of my life.  But I'm a while lot better. More puzzle pieces fit together and my symptoms make more sense.  (I'm older too - so that doesn't help things.)

Issie

[bellgirl]

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 this was two years after my bulls-eye rash, so I'm not really sure that there aren't some beasties floating around in there still.  I still suffer with a lot of achiness, especially when the weather changes. 

[rje11]

@kimbellgirl, do the group rules allow you to say what docs you use in HSV?  Good neuros are very hard to find here... I have diabetic autonomic neuropathy, but no specific doc for that.  Was diagnosed at Mayo in 2015 but I live in HSV.  My internal medicine doc is great, though.  Does insurance cover any of those supplements you use?  

Thanks

rje11

[MomtoGiuliana]

18 hours ago, rje11 said:

@kimbellgirl, do the group rules allow you to say what docs you use in HSV?  

rje11

Yes it is fine to state the name of your doctor on the forum.

[bellgirl]

@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 with one issue at a time with medication for 7 years. In Huntsville I found a cardiologist, Dr. Kiessling who has diagnosed others with POTS, so I went to her, and she is great giving me a echocardiogram and reading it before I left the office, which is great for me. My PCP is wonderful, too, and will write all my prescriptions, too, so I have no need to go back to Birmingham, anymore. I just don't do well traveling. I need to medicate to travel, and didn't feel the need to go back. You may need a neurologist who is familiar with POTS. I've heard that Dr. Hitchcock, and Dr. White in Huntsville and Dr. Kazamel at UAB are good neurologists for Dysautonomia, although I'm okay right now with the meds I'm on, so until I need something more, I will stay with my Rheumatologist, Dr. Phillips, Tim Byrum NP, Dr. Strickland my PCP, and Cardiologist Dr. Kiessling.

[rje11]

On 1/7/2019 at 6:43 PM, kimbellgirl said:

@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 with one issue at a time with medication for 7 years. In Huntsville I found a cardiologist, Dr. Kiessling who has diagnosed others with POTS, so I went to her, and she is great giving me a echocardiogram and reading it before I left the office, which is great for me. My PCP is wonderful, too, and will write all my prescriptions, too, so I have no need to go back to Birmingham, anymore. I just don't do well traveling. I need to medicate to travel, and didn't feel the need to go back. You may need a neurologist who is familiar with POTS. I've heard that Dr. Hitchcock, and Dr. White in Huntsville and Dr. Kazamel at UAB are good neurologists for Dysautonomia, although I'm okay right now with the meds I'm on, so until I need something more, I will stay with my Rheumatologist, Dr. Phillips, Tim Byrum NP, Dr. Strickland my PCP, and Cardiologist Dr. Kiessling.

Thank you for all of this information!  There was some reason that I could not be accepted as a patient at the Dysautonomia -MVP center in Bham, but I can't remember what it was.  One of the other medical conditions I have made me ineligible to be treated there.  I did see Dr. Kazamel at UAB one time, but he just did a cursory exam and said there really was not anything he needed to see me on a regular basis for, since Mayo had already done all of the diagnostic.  I used to see a Movement Disorder Specialist at UAB -  I had Deep Brain Stimulation surgery there in 2007 - but I have changed and am now going to Vanderbilt.  I do like Dr. Hitchcock as a neuro, but I have been a patient of his partner, Dr. Greer, and would not be able to change over.  😉  Dr. Greer actually told me that I was "two grades above his pay level" at one point.  He is VERY hard to communicate with via messages. I started seeing him when he first went into practice, since he was the only local doc who could program DBS units.  

Right now I am doing okay and I also have a wonderful Internal Medicine Doc - Dr. Kelly Lynn.  I have been with him for years and he is a great doc - very caring and thorough.  I see Dr. Kelley Smith here, too (cardiologist), and other docs, also.  I am coming off of a 2-3 year period where I was hospitalized many, many times.  Doing much better now, so I try to stay away from docs if I can. 😉 

I live in HSV, too, so let me know if you ever want to try to meet up!  

Blessings

Ramona