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I currently see a GI and a neuro in Milwaukee. I can't drive the hour and a half anymore so I asked my neuro for a referral to someone closer. She gave me 6 names of local neurologists and said I need a mitochondrial specialist. First time she's used that term. I'm hoping you guys can give me some kind of direction as to finding a good specialist. I'm not sure what questions to ask when looking for a new dr.

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I know this isn't the answer you are looking for but I have struggled greatly finding local docs who understand this and can provide any insight. For instance, I was at the cardiologists office today and he said, "I learn more from you than you learn from me." but the fact is he knows my heart and a lot about heart issues that I don't know about so when my autonomic doc (8.5 hrs away) suggested I needed a heart monitor to make sure there wasn't an "accessory pathway"- my cardiologist helps me understand wha that is and the different types of pathways- some of which can be concealed (not visible in an EKG).

Funny thing is, I live in Tampa Bay Florida- where there is HUGE healthcare mostly bc of our elderly population- so you would think there was some doc here- if so, he/she is hiding under a conch shell. All my docs who understand Dysautonomia or MCAD are all an 8.5 HR or more drive away and it is well worth it. Of course the flip side is the cost of that- not just financially and logistically (of which both are huge) but the stress of travel on my body. Last week on the way home from Charleston I needed to stop for another restroom break. The previous couple of stops were hard bc I was so faint- just barely able to walk w/o help. About two hours away from home we tried to stop again and I couldn't stand or put any weight in my feet. I almost fell onto the asphalt pavement of the rest area after opening the door. My hubby picked me up and made a bed for me in back and I put a cover over my eyes and headphones in my ears for the remainder of the trip home. Couldn't speak in full sentences the whole next day. Travel is hard, but if I don't go I will be stuck with docs who simply can't help.

I have 4 local docs (primary, cardio, neuro and sleep). All of which know my case and are willing to work w out of town docs. So when I looked for local docs I told them the long story of symptoms and asked them if they wanted to take on my case. Also, I would ask how many Dysautonomia pts they have experience with. Also, are they willing tom work w out of town docs. And most important, if you go for a first visit and they tell me things that are wrong (ie: " take this pill, you'll be back to driving in a couple of days" or "this is anxiety, take a Xanax and go see a counselor"- never go back.

Finding a good team of docs is probably one of the most frustrating parts of this process. I wish you the best and will pray that you find the right doc(s) for you. :)

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She gave me 6 names of local neurologists and said I need a mitochondrial specialist.

What did she say about mito?? This is something I tried to pursue, but was dismissed by Doctors. Was told I don't fit the profile and something about mito people having certain characterisitcs, like short stature. The whole thing made no sense. Did she think a mito disorder might be causing the POTS?

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