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What Kind Of Doctor Follows Your Case?


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I'm having trouble finding someone to stick with me, and I'm not sure what to do next.

My primary doctor is terrified of me, and never even heard of pots before me. The guy who diagnosed me is an electrophysiologist who has kind of followed me, but I tried to schedule my 6-month check up and they told me since he doesn't have any more ideas that I shouldn't see him anymore. I haven't seen a neurologist where I live in over a year now, and I saw great doctors at Mayo, but they're too far away and not readily available.

So now I'm just a bit scared that if I ever need something, I will have no one to go to! I'm good right now... but it just scares me.

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I see an Endocrinologist.

However, it took me at least six doctors in a manner of three months to find her and going outside of the research hospital/network I normally go to. I had gone to two neurologists, four internists, a gastroenterologist (due to what my nurse aunt suspected was an obstruction) and three trips to the ER from such severe pain.

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I drive 3 hours one way to Vandy to see a neurologist there. It's worth the drive and the peace of mind to know that I'm getting the best of care from experts in the field. Good Luck in finding a competent doctor. Surely there is one within driving distance of your home. Where do you live?

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I actually live within driving distance of Rochester, right outside St. Paul, MN. They were wonderful.

But I want a doctor that I can see in a hurry if I need to, or someone I can call with questions, or you know, who remembers who I am! So if I have problems there will be someone who has seen me and knows what is going on.

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I've had the same problems, every doctor saying "Not it!" ;-) What I'm trying now, ha, and I dont know how long it'll work for, but so far think it's my best shot.. I found a local neuro to try and be the "main guy" managing the POTS. And every 6mo or so, I'll consult with a POTS specialist farther away in the city. And the idea is that the two will try and work together.. the POTS specialist hasnt been great with returning my local dr's calls, eventhough they supposedly know each other.. but I'm gonna keep trying to work on that.. This setup is still relatively new.

I also have my internist(pcp), who doesnt know what to do with me really as far as treatment/management goes... but I see her every 3mo to update her on what I've been doing with all my various drs.. and she's the one who's been filling out my disability forms thus far... I kinda just keep her posted on everything so she knows overall what's going on... but defer to the local neuro for treatment.

when looking for the local neuro to manage things.. I called and sent info on POTS first, and explained what I was looking for.. a doctor willing to learn about POTS if he doesnt know much about it, and work with the other POTS specialist. Then went in for an appt or "interview" as I call it'-) and further reinforced what I was looking for, someone not afraid to work with me and try, and see if he still wanted the case...

Like i said, it's still relatively early to tell how it'll be.. but that's all i can recommend, just calling/interviewing the docs and telling them flat out what you're looking for... i even tell them, i'll give them time to look over the paperwork, etc first and get back to me.. and to be honest if they cant'/dont want the case..

dont know if that helps you, but that's what i tried..

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Each doctor is so different. There is no rule about what kind of doctor will know how to help. I have an integrative MD. He knows all about hormone balancing so my body has that all balanced now and I have no more migraines.

Another integrative MD knows about my CFS and POTS. I get tons of good help with supplements. Doctors with knowledge about supplements is good to have. Helps symptoms like brain fog, etc. I want to have all of the support my body needs to stay strong. Blood tests are important also, many doctors don't know what to do there either.

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I have an Internal medicine doctor I see locally. He helps me with med refills, ordering labs, general illnesses, and fall injuries. I drive 3.5 hours to see an EP Cardiologist that I see every 6 months. That seems reasonable, this last time we didn't make any changes but they are at least available to call if I have questions or problems.

Brye

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Sorry to hear about the trouble you are experiencing.I know how frustrating it can be.I see an electrocardiologist. There are cardiologist here in the town that I live in but they don't know anything about pots so I travel to a bigger city in the state to see the doc that i'm seeing now.

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I wonder the same thing. Does anyone live in Toledo, OH? And who do you see? I see Dr. Blair Grubb, but it takes me 6 mths to a year to get in for an appointment. If I am sick, I want to be seen quick too. I would like to find a family Dr, or neuroloigist or cardiologist that doesn't take several months to get in.

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Ha, I just looked at my post. It said I have a great doc for hormones so I have no more hommones! I meant no more MIGRAINES! Corrected that. Integrative MD's are so good.

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I did wonder about that, but I thought maybe your hormones were so balanced, it was like there are none?? lol.

I've tried an integrative doctor, but I felt like they were just pushing supplements at me all the time. And it was expensive!

I'm going to try a new primary doctor that someone on here had suggested in my area, and hopefully he will want me.

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I guess they can be different. I was lucky to find one years ago when docs were not helping or believing in CFS. Now I live in another state and I have another great integrative doc. YES, good supplements are super expensive. But they have done a lot to help me. I believe in supporting my body so it doesn't have to struggle more than neccessary. I order most of mine as long as they are the brands she likes. She looks carefully into each one. I sure hope you find a great doctor that knows about POTS. :)

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I have a cardiologist. Took me 3 yrs to find a doc that would stick with me and really try to help me. I've had him for 3 yrs now and he has helped me a lot. He is good at so many things. I can't even guess how many drs couldn't help me before I found him!

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I am treated by a preventive cardiologist that has accumulated Dysautonomics over the years. I got lucky twice I think b/c I went through 4 doctors (2 primary, neurologist, & EP cardiologist) before I found mine but my GYN is who referred me! Imagine that....a GYN! It took my GYN to say "it sounds like Dysautonomia and I know a doctor that treats it". She even told me that beta blockers are the usual treatment. So my two life-saving docs are my GYN & my cardiologist. On another note, my cardiologist told me that not many doctors care to treat Dys b/c there is no money in it. I was floored! No money? We make lots of doctor visits, isn't that $$$!?!

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I have had a hard time finding a dr as well. The neuro that referred me to the Mayo refused to see me after my dx. It was the only neruo within 125 miles. No primary care dr would take me besides the public health department(the dr was super nice but didnt know anything about pots). I had to push for 4 months with my insurance to get a primary care dr. I actually see a pulmonologist. this dr knew more then the cardiologists in my area. There were lots of cardiologists in my area because of retirees but they focus on the same old issues. The pulmonologist used to work at a major research hospital on several teams with lots of rare conditions. He worked with alot of MSA so he understand OI but doesn't get the hyperandregic aspect(well I think he knows what it means but does not understand how disabling it is). I haven't found a primary care dr that is willing to treat everything in my area. Right now I use the pulmonogist for the OI and illiness like sinuses/colds and a psychartrist for the hyperandregic part. The closest psychartrist is 300 miles away so he only makes me come every 6-9 months. I also go to the mayo once a year. For my hyperflexible/EDS issues I see a podatrist and physcial therapist every few months. I wish I had better options but again no specialists.

I used to live in new england and had so many choices. Now one HMO controls everything, so even second opinions are hard to get. I would move if I could for better medical choices (and a place where it is not over 100 everyday in the summer), but my kids are doing great in school, DH has a flexible job so he can help me and we have decent insurance so moving is not a good option.

Your dr is correct there is no money or not good money in treating us. My father and ex were both dr's so I know way too much behind the scences drama. If you think about it we go to the dr and spend more then the average time and pay a co-pay. There are very few extras or tests invovled after the dx. It is mostly check ups and sick visits which the profit is low on. Most of the dr's where I lived luckily are salaried but the ones that are not get about $65 from my co-pay and insurance, since it is a contracted rate. I usually spend at least 20 minutes sometimes 30 with the dr. The dr always is careful to spend extra time check drug interactions and possible reactions. After rent, staff, malprcatice taxes etc $130 an hour isn't that much, maybe the dr nets $45-50 for that hour. One of my friends who is a family practice dr just had to cut out OB and pedatrtrics because she was losing money due to high malprcatice in those areas and low reimbursement. She said the nurse practioner makes more money then her and she regrets the extra schooling and stress of becoming a dr.

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I see Dr. Shields-Neurologist at Cleveland Clinic in Ohio and GastroEnterologists at Cleveland Clinic. I am also followed by my PC who happens to be my cousin for minor things-colds, flu. It can be very frustrating not having the right doctor, because before Dr. Shields, I had no treatment and everyone was making me believe it was all in my head feeling weak, shortness of breath, constipation, weight loss, etc....It wasn't til I literally passed out-crashed & burned and was hospitalized at Cleveland Clinic that I finally had a diagnosis. The sad thing is it took over a year to find out and mostly likely over the course of 5 years to identify that is when all my problems began after I had my gall bladder out. Good Luck with finding the right person.

Will keep you in my prayers.:)

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I had this same issue.... my long time doc, who was a personal friend, just got 'tired' and 'fed up' with me..... so, as she started acting like i was a looney case and treating me like one, i fired her. Through a disability psych doc, he told me about a rare case doc in my area and to call him. I called his office, had to submit my info, records, etc and after 6 weeks of waiting, they called and said he would accept me as his patient (as he no longer accepted patients, unless it was a rare case that he thought he could learn/help from/with. He is an integrative doctor, he uses all methods whether conventional, holistic, chinese.... we have even talked about the marijuana pill. He is also a professor at our local medical school and he has had many awards for his passion of rare cases and teaching his students about rare cases. I've only been with him since decemeber..... I see him once a month, but if i need to get in sooner, they get me in with one of his associates. He is willing to learn about what i have and he believes me and treats me like a person with an education. I so hope, he will always be here for me until he stops practicing. He has such an open mind and he and I both will trade theories, etc about our next steps.... etc. I had to search, ask, ask and ask..... many phone calls... took me about 6 months to find a good doc. I hope you find one soon!

God bless!

tennille

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One more thing.... i do see a therapist and a case worker too..... for a good 2 years now... they specialize in chronic illnesses and it helps so much to see them and talk to them....

tennille

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Wow, so much drama in the medical field lately. I know they mostly can't help it, but it makes me sad because the patients are the ones who hurt because of it.

My doctors just seem so afraid of me, like I'm this daunting case where there is always something wrong and I never get better. I feel that way too sometimes. But still... I wish someone could just understand.

But yes, tennille, the therapist has been the greatest physician for me (Well, God, then the therapist). Getting my depression and anxiety over this situation has been the biggest help in getting me back to normal.

Thanks everybody for the help! You are all so great.

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