Need New Doctor In Az - Help

[issie]

Anyone know of a doctor in AZ who can treat someone with POTS and Ehlers Danlos? I feel I have the hyperadrengic form. Been to the Mayo Clinic, but they only diagnose, don't treat. My new insurance doesn't cover the clinic here either. Need a good doctor who's open to look at alternative things too. Really like to go natural, if possible. RX's as a last resort. Have tried 4 different beta blockers and Florneff. Didn't do well with any of them. Right now using Emergen C for electrolyte balance and Tramadol (Ultram) for pain. Seems to help. But, need a doctor to do some follow-up testing and try some other suggested things from the clinic. Need someone familiar with the adrenal surges and the hisitimine release issues. Have been dealing with this long before knew that the issues were POTS. Also have tremors and gait disturbance with severe weakness. I don't mind having to travel several hours, if necessary. Hope someone knows a good, insightful doctor who truly cares for their paitents and strives to HELP.

[arizona girl]

Hi welcome to arizona. There are a few of us that are from az on the forum. I saw a Dr. Theresa Grebe in downtown phoenix to have the genetic testing done for Ehlers Danlos vascular after my colon ruptured. I don't have it, but needed to rule it out. She was very nice her primary practice is pediatric genetics, but she does see some adults. I don't know if she treats adult EDS patients, but she would be a good place to start for the EDS.

Well the mayo here wouldn't treat you for pots anyway, they send you to rochester, don't know if they treat EDS. I went there before I knew what was wrong, then later when I found out it was pots they said they don't have any doctors here to treat it. I felt like they wasted my time and money. I know there are a few other arizona EDS's here. Don't know if they are happy with their EDS docs or not. Hopefully one of them will chime in.

From what I do understand here on the forum, is that it is very common for EDS patients to have secondary pots because the blood vessels are so stretchy that your blood pools. I'm not sure what your symptoms are that make you think that it is hyperadregenic? I suppose if your blood is pooling because of eds that you could have a hyper response as well, as your body compensates to get the blood to your brain. I can only speak to it from what I deal with as I have been diagnosed with this form of Pots, but pots in my case as in your is secondary. My diagnosis was made by having a tilt table test done, having my supine and standing catchecolomines (epinephrine, norepinephrine, dopamine) tested, and a bunch of other tests to rule in or out other conditions. A hyperadregenic diagnosis is made when your norepinphrine jumps significantly from supine to standing, usually causing standing hypertension. Mine went from the 400's to almost 1200 just from standing. I also have orthostatic hypertension when standing and talking. The TTT showed the BP/HR elevations and then a sudden drop after nitro showing syncope as well.

All this led me to see a neurologist who does skin biopsy to look for small fiber neuropathy. The neuropathy is autoimmune and causing all my pots symptoms. Most if not all of my autonomic functions are impaired. So which doc to see and what type of treatment are going to be different depending on what is causing yours.

I know my cardiologist can order the test to see about the catchecolomine, but she is still learning what to do with the info, but at least she knows about the test. She was asked to do it by Dr. Grubb in toledo (the pots guru) after I saw him and he diagnosed it. In my case though my cardiac symptoms appear to be caused by the neuropathy, so she is letting my neurologist drive the treatment plan right now. I'd be happy to give you there names if you think a cardiologist or neurologist would be helpful.

My former cardiologist Dr. Mary Grace Warner is now practicing homeopathy. I loved her and was sad to see her leave her cardiology practice. Now though she can treat the whole body and she was already using integrative medicine with natural treatments when she was just a cardiologist. So if you want natural I would trust her judgement. Homeopaths don't utilize insurance plans though, so out of pocket. So hope this helps. You can pm me if you want more details. Where in arizona are you?

Anyone know of a doctor in AZ who can treat someone with POTS and Ehlers Danlos? I feel I have the hyperadrengic form. Been to the Mayo Clinic, but they only diagnose, don't treat. My new insurance doesn't cover the clinic here either. Need a good doctor who's open to look at alternative things too. Really like to go natural, if possible. RX's as a last resort. Have tried 4 different beta blockers and Florneff. Didn't do well with any of them. Right now using Emergen C for electrolyte balance and Tramadol (Ultram) for pain. Seems to help. But, need a doctor to do some follow-up testing and try some other suggested things from the clinic. Need someone familiar with the adrenal surges and the hisitimine release issues. Have been dealing with this long before knew that the issues were POTS. Also have tremors and gait disturbance with severe weakness. I don't mind having to travel several hours, if necessary. Hope someone knows a good, insightful doctor who truly cares for their paitents and strives to HELP.

[issie]

Arizona Girl,

Thank you for responding. I did send you a note. I think I need all those type doctors. I'm new to the diagnosis and still seems to be allot to rule out. I was supposed to see the Electrophysologist at Mayo for follow-up and he got sick. And then my insurance changed so I couldn't see him. I've had adrenal issues for years. The doctor who was trying to figure things out, figured out certain components of things but never put the pieces of the puzzle together for the POTS diagnosis. I've had to do cortisol support at times, especially for surgeries. I have the adrenal surges, hot flashes etc. I feel like I'm just in the beginning of the journey. I had the TTT test and it was confirmed for POTS. I always have 40 or more point increase in pulse rate on standing. I am now having trouble with talking and my favorite thing to do ---singing. I can't do it anymore. I get light headed, feel faint and get naseau. I also have a brain menigeoma. They don't think this is affecting anything though. But, I still need follow-up with MRI by a neurologist. I also have some neuropathy symtoms starting. I have additional tumors too. But, nothing has grown in a year. I have the miagrains that other POTS people have. My real annoying symptoms are tremors and gait disturbances and weakness. I was originally treated for Parkinsons for a year and it wasn't helping. If anything, I got worse. Then the dr. said she thought it was multiple system atropy. I didn't like that diagnosis and went to Mayo and got the POTS diagnosis. This along with the Ehlers Danlos made much more sense. And at least, I don't think I'm going to die in 10 years or less. So, that's my story. Now begins the adventure. Any help from anyone will be GREATLY APPRECIATED!!!!

[potsgirl]

Issie~

What part of AZ are you in? I'm in Tucson and have some good doctors here, including a neurologist, a cardio, and an internist. PM me if you'd like.

Cheers,

Jana