What Kind Of Specialist Handles Your Pots/dysautonomia

[SarahA33]

Hi there, everybody!

Reading through your posts and a ton of articles I'm left wondering what kind of dr. really should be handling our POTS? It's confusing..

a) neurologist

b. nephrologists (htn specialists)

c) Primary care doc,

d)Electrophysiologist,

e)Cardiologist

F) other

I'd really love to hear everyone's answers and feedback. Thank you for all of your support since I joined, Wish I would have found this much sooner!

Sarah

[bellgirl]

I go to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. They specialize in Dysautonomia with the head of the group being a Cardiologist, but I was sent to them through an ENT, who did a thesis on Autonomic Vertigo; I found him after 13 long years of declining symptoms, and going to all the right doctors for a diagnosis. I have a Sleep Specialist for my sleep apnea. I have a Neurologist, who did an MRI, MRA, to rule out aneurysm, and tests for Lyme, Syphilis, and MS, all of which were negative, who feels I must have something neurologically wrong with me to have this, so he continues to see me twice a year, too. I also have a Rheumatologist and Nurse Practitioner for my Fibromyalgia and I'm equivocal for Scleraderma, but not positive yet. My Primary Care Physician knows about dysautonomia, and I found out about my vitamin D deficiency through her. She also did a test for Myasthenia Gravis, which I don't have, both of which I asked to have done. My GYN has been very supportive, too, even though she couldn't help me, other than to tell me that my 3 fibroids didn't need to be removed, which I think was caused by all the estrogen I took over the years for birth control. That's my story in a nutshell

[looneymom]

My son's care is handled by a cardiologist, neurologist, family doctor for minor things, and possibly a brand new immunologist that knows nothing about POTS. However, she gladly took the article I brought on POTS that was written by Dr. Grubbs. Any doctor that's willing to learn, you need to give them a chance. Tyler has an appointment this Thursday with her to go over test results. Hoping to find out what might be causing or making his POTS worse.

Rachel

[dmjl27]

Each person is different and needs different care. Because your illness will take on multiple scopes of speciality, you will find that you might need to 'educate' your specialists on your disorder as many, many doctors are not well versed in the area of Dysautonomia.

I see: A cardiologist (who handles the majority of my care and is an expert in the field of dysautonomia.

However, I also see: primary care, neurologist, gastrologist, urologist, and rheumotologist. (but with a lot of help along the way for them to understand that the symptoms they are seeing are much related to my autonomic failure). Can be frustrating, for sure! However, if you find ONE good doctor who can manage the majority of your care, that's the best way to go to begin. They can help in your care as it relates to other specialties, as well.

Good luck to you!

[SarahA33]

I go to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. They specialize in Dysautonomia with the head of the group being a Cardiologist, but I was sent to them through an ENT, who did a thesis on Autonomic Vertigo; I found him after 13 long years of declining symptoms, and going to all the right doctors for a diagnosis. I have a Sleep Specialist for my sleep apnea. I have a Neurologist, who did an MRI, MRA, to rule out aneurysm, and tests for Lyme, Syphilis, and MS, all of which were negative, who feels I must have something neurologically wrong with me to have this, so he continues to see me twice a year, too. I also have a Rheumatologist and Nurse Practitioner for my Fibromyalgia and I'm equivocal for Scleraderma, but not positive yet. My Primary Care Physician knows about dysautonomia, and I found out about my vitamin D deficiency through her. She also did a test for Myasthenia Gravis, which I don't have, both of which I asked to have done. My GYN has been very supportive, too, even though she couldn't help me, other than to tell me that my 3 fibroids didn't need to be removed, which I think was caused by all the estrogen I took over the years for birth control. That's my story in a nutshell

Bell,

Thanks so much for opening up. It sounds like you've been through so much. ::hugs::

Thank you for adding the sleep specialist because a great deal of POTsies (cant remember exact statistics) have sleep apea or some form of sleep disturbance. Thank you!

[Katybug]

I have a neuro that specializes in dysautonomia and migraines, a cardiologist, an immunologist, and a geneticist. They all contribute to managing my symptoms as I have mcas and eds with my pots. My PCP also sees me every three months to update all of his notes on my meds status, etc so, hat he can fulfill insurance company inquiries and so he is up to date if I should ever actually have a normal illness like strep or the flu. Lol! That way he (or one of the other pcp in the practice) have my meds and allergies and diagnoses on file to make decisions about basic care.

[AshleyPooh]

I have a cardiologist who diagnosed and treats my dysautonomia. It took only a couple of minutes describing my symptoms to her for her to immediately go " Oh that's dysautonomia, let's order a tilt table test".... done and done. She's the one who gives me the Midodrine for the NCS.

[Katybug]

Oh yeah...I forgot the sleep specialist. I have one of those too.: -)

[Racer]

I see a electrophysiologist who diagnosed me with dysautonomia. I also occasionally see a cardiologist in the same practice. The EP seems to know all about the cardiac side of dysautonomia, while the cardiologist seems to only know what he learned threw osmosis. I have a hard time trusting anyone other then my EP with my cardiac care!

I also see a neurologist, who knows just enough about dysautonomia to be dangerous. He is all to happy to try to over medicate me for seizures and migraines, but other then meds, he is not very helpful. I also see a gastroenterologist and his numerous physician assistants. The GI dr's are just inadequate for me, so I am hoping I can get a appointment with the nearest motility center.

My primary care dr knows nothing about dysautonomia, is old as dirt and goes with the "just tough it out" philosophy. He does absolutely nothing to help me and is useless to me. Oddly enough his PA was the kindest, most compassionate person, and more helpful then the dr. I am also on the hunt for a urologist.

I have way to many long standing issues that need attending to, just not many specialists in my area.

[Chaos]

I have a neuro who specializes in autonomic issues who handles most of my POTS related care but I have to travel out of state to see him. I also travel cross- country to see an immunologist. I have a cardiologist, endocrinologist, rheumatologist, allergist, gastroenterologist and PCP I see locally. I've also seen a sleep doc and pulmonary doc locally.

The only local doc I have who really knows anything about POTS is my cardiologist and he didn't know much when I first started seeing him. He's learning more but I pretty much just keep him on board in case I need local care so I have someone in town who could be used as a resource in case I ever needed to be admitted to the hospital. He is also willing to write orders for things like IV saline when the infusion center won't take the order from the out of town MD. My other docs are happy to take my money so I can update them/educate them on everything I'm learning at the out of state facilities.

[okiedokie123]

Wow, what a great topic! Taking notes for sure.

Not trying to side-track the topic, but do the majority of you also use a PPO insurance to see all these specialists or do you use HMO's and have a PCP refer? I have Cigna Open Access so, it's like a mix between PPO and HMO. I can see specialists for $50 co-pay with no referral but it has to be in-network.

[Christy_D]

My son was diagnosed by a cardiologist, but has always been treated by neurologists. His pediatrician has been very 'hands off'. He used to see a gastroenterologist who was up on dysautonomia as well. He now also see a hematologist for MCAS as well.

We have a PPO insurance plan.

[SarahA33]

Hi, Melanie, Good luck to you and thanks for responding

Sarah

[SarahA33]

I have a neuro that specializes in dysautonomia and migraines, a cardiologist, an immunologist, and a geneticist. They all contribute to managing my symptoms as I have mcas and eds with my pots. My PCP also sees me every three months to update all of his notes on my meds status, etc so, hat he can fulfill insurance company inquiries and so he is up to date if I should ever actually have a normal illness like strep or the flu. Lol! That way he (or one of the other pcp in the practice) have my meds and allergies and diagnoses on file to make decisions about basic care.

Katy,

I'm so glad that you have a PCP who tries to keep updated on your case. Mine stunk.. it became too much to coordinate and I found my current POTS dr ended up handling everything so i decided to relinquish my care from my PCP.

[SarahA33]

I see a electrophysiologist who diagnosed me with dysautonomia. I also occasionally see a cardiologist in the same practice. The EP seems to know all about the cardiac side of dysautonomia, while the cardiologist seems to only know what he learned threw osmosis. I have a hard time trusting anyone other then my EP with my cardiac care! -- Racer, I can completely identify with you. When you've been passed around between so many doctors with so little knowledge of POTS, you stick to doctors like white on rice when you find doctor's who are aware of it, and are able to diagnose you. Its understandable that you tend to not trust anyone else but them. I go through the same exact thing

Good Luck Racer, I hope you find the urologist that your looking for

Sarah

[SarahA33]

My son was diagnosed by a cardiologist, but has always been treated by neurologists. His pediatrician has been very 'hands off'. He used to see a gastroenterologist who was up on dysautonomia as well. He now also see a hematologist for MCAS as well.

We have a PPO insurance plan.

Hi Christy!

Hope all is well. thx for adding gi

[SarahA33]

I have a cardiologist who diagnosed and treats my dysautonomia. It took only a couple of minutes describing my symptoms to her for her to immediately go " Oh that's dysautonomia, let's order a tilt table test".... done and done. She's the one who gives me the Midodrine for the NCS.

Ashley,

I'm SO glad that you were able to find a cardiologist who knew about pots and dysautonomia. Im hoping the midodrine is helping you? I am hyper but am tolerating midodrine well. The flushing from the pots but goosebumps from the midodrine isn't very fun.

[SarahA33]

I have a neuro who specializes in autonomic issues who handles most of my POTS related care but I have to travel out of state to see him. I also travel cross- country to see an immunologist. Chaos would you mind sharing your diagnosis please?

The only local doc I have who really knows anything about POTS is my cardiologist and he didn't know much when I first started seeing him. He's learning more but I pretty much just keep him on board in case I need local care so I have someone in town who could be used as a resource in case I ever needed to be admitted to the hospital. He is also willing to write orders for things like IV saline when the infusion center won't take the order from the out of town MD. My other docs are happy to take my money so I can update them/educate them on everything I'm learning at the out of state facilities.

[Christy_D]

SarahA,

My son see's Dr Afrin, he is an oncologist/hematologist at Hollings Cancer Center in SC. Then we also have a local oncologist/hematologist at Siteman Cancer Center who treats my son through direction from Dr Afrin. We were very fortunate to find a local doctor willing to treat the MCAS to save us from a 14 hour drive to SC. We now only see Dr Afrin twice a year.

Christy

[Chaos]

I have a neuro who specializes in autonomic issues who handles most of my POTS related care but I have to travel out of state to see him. I also travel cross- country to see an immunologist. Chaos would you mind sharing your diagnosis please? Sorry you have to travel such far distances, but I'm sure most of us across the world to find a doctor who could help us. I am really happy to hear that you have a neuro who is familiar with AD. Do you sometimes find it difficult to have your doctor so far away from you when your symptoms flair up or your in a bad spell? maybe you have a protocol for that such thing? I'd love to hear it

The only local doc I have who really knows anything about POTS is my cardiologist and he didn't know much when I first started seeing him. He's learning more but I pretty much just keep him on board in case I need local care so I have someone in town who could be used as a resource in case I ever needed to be admitted to the hospital. He is also willing to write orders for things like IV saline when the infusion center won't take the order from the out of town MD. My other docs are happy to take my money so I can update them/educate them on everything I'm learning at the out of state facilities.

I think that's really great that your cardiologist is interested in learning more about POTS. I think we need to educate as much as we can considering most of us know more than the doctors initially. I mentioned in this thread about wanting to attempt a dr education project ith ER dr's and PCP's since patients usually end up there first. There are so many of us with autonomic dysfunction and maybe 10 doctors and 3 centers that claim to be able to treat it? It's ridiculous to me.

Immune diagnosis is CVID and "non arthropod borne viral disease of the CNS". The immunologist I see has a research facility where he specializes in ME/CFS research although he hates to call it by that name as he says it trivializes the "immense damage being done to the neuro, endocrine, immune and GI systems by this disease". He was a Ph.D engineer before going to med school so doesn't think like most docs though. It's very refreshing.

Yes it's hard having my docs out of town but they are both available by phone and 1 by email. I do a lot of my care by phone and have skype appts with the doc who is cross country so I only have to go out every 6 months to see him. He orders labs monthly which I fax to him etc so it works but isn't optimal obviously. However, I'm just so grateful to have docs on my team who care and know about my conditions that I'm willing to travel to see them. And I'm very grateful they are willing to work with me this far away from them as I know it's not easy for them either.

Not sure how much my local cardiologist WANTS to learn about POTS. LOL Think he's had several patients show up with it however so maybe it's being pushed on him and since I see him every 6 months with my updates from these other places and now he's taken a couple of continuing ed sessions on it, he is starting to be more interested in it.

It's really nice when docs are willing to work with you and learn. I am more than willing to help educate them. I worked in healthcare for 30 years so I know my way around. I don't expect any doc to know everything because there is simply too much out there for them to know. BUT, what I can't stand is when they totally disregard what you are trying to tell them, dismiss you as an idiot and make snap judgements about your mental health based on a 30 sec. assessment. I have a brother who is a doc and what he tells me about how they were taught in med school (back in the 70's) totally fits with what so many doctors' attitudes still are these days.

[Racer]

Good Luck Racer, I hope you find the urologist that your looking for

Sarah

Thanks

[bellgirl]

Sarah,

I do have a GI guy, too; but it was my PCP, who ended up giving me medication, urogesic blue, for spasms for my GI and GU problems, that I sometimes encounter. My GYN did prescribe my zofran for motion sickness, when I was taking a long trip, and my Nurse Practitioner for Fibro said he would renew that prescription if I needed it, so I thought that was a nice gesture. My PCP is really good at listening to all I say to her, knowing I'm a nurse, and she is always willing to help, like when I had trigeminal neuralgia, I just asked for neurontin over the phone, and she prescribed it for the nerve pain. Now I'm on it all the time for Fibro, so when my tooth was so infected, it hardly hurt...lol.

Yes, it is very important for us all to be tested for sleep apnea, and you need a reputable center to do this, because there are many types of sleep disturbances. Ask your doctor. At least 30% of us have sleep apnea!! My Cpap saved my life!! I did cough up blood once, so I did go to a Pulmonologist after being told in the ER that I had a mass in my lung!! That was before I was diagnosed, so I assume it was blood pooling, since I didn't have TB or lung cancer!! Sure glad it wasn't either of those. I'm never going to the ER again, unless my husband calls for an ambulance, because I waited 8 hours to be told that I didn't have a pulmonary embolus. I'm still alive and fighting the good fight!!

[Cala]

I see a neurologist who is an autonomic specialist, I was lucky enough to have one in my town because up until I was diagnosed I'd never heard of or imagined I'd have something as quirky as what I've got LOL

I'm also blessed with a general practice doctor that very familiar with it and what he doesn't know, he's always willing to learn.

He's also willing to share colorful metaphors with me when he thinks my neurologist is getting too "let's test this" with me LOL