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Suthrngal

How Do We Find A Doc To Help Us Find The Cause

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How do we find a doc to help us find te CAUSE of pOTS symptoms...I feel like I've been playing whack a mole of symptoms for 7 years!

I control most with salt and fluids.

I now have neuropathy (pins and needles) in legs and feet.....

And still times of painful slow gastric emptying. One doc thought this was caused by low cortisol and rec. Cortef (hydrocortisone)...before I knew I had POTS and my symptoms took a downward spiral straight into a year of ****......ER visits, Dysautonomia clinic in AL, MAYO and tons more neurologists etc.

question: if I had low grade pots (dizziness, dehydration and slow gastric emptying) and the CORTEF ruined me....any idea why?

Thank you for your time.

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Taking synthetic forms of adrenal steroids (hydrocortisone, prednisone) can cause your adrenals to stop functioning properly. I don't know how common it is, I just know it's a possibility because I was on prednisone for a long time at one point. This is not specific to POTS or dysautonomia patients, it can happen to anyone. They would have to do cortisol testing to check for this issue.

As for finding a doc to find the cause of your POTS, I can only speak to my own experience. Even once I had a diagnosis, the docs were more interested in treating symptoms than finding a cause. I therefore used POTS as a stepping stone and immersed myself in researching my symptoms (especially my weirdest ones assuming they would narrow the search more quickly and accurately). As I found reasonable suspicions and had peer reviewed info in hand, I took it to my PCP or cardio and reviewed it with them and then asked them to tell me which doc in the area they would go see to investigate the issue. I am lucky to live where I do as there are good specialists in POTS, EDS, & MCAS in this area. I went to these docs and was very straightforward about my suspicions. Honestly, because these docs are so specialized, they review your medical files before they even accept you as a patient, so if you get in, they usually suspect you have something they can help with and/or need to diagnose. So, that's how I was able to get as far as I have. Hopethat helps.

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Thanks. I live in a small town. I had a POTS severe reaction to one dose of hydrocortisone and that strted daily pots issues.

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I've wondered the same thing about finding a physician to help determine the root cause. I have a bunch of doctors and it seems like they all just know a piece of what's wrong with me. I've occasionally had inquisitive doctors that helped me to the next step, but I do think we have to do a lot of it own our own, and your best bet may just be finding a doctor that's open-minded to your ideas.

I don't know much about Cortef and whether it can damage the nervous system, but I do think having a single trigger that turns mild symptoms more severe isn't uncommon. For me, I think I maybe had a genetic predisposition based on some childhood stuff + hypermobility, then got mono and never fully recovered, so more POTS symptoms. Then another virus just took me over the edge into full blown POTS. So I don't really consider the last virus the cause - it was an accumulation of things. BYou may be better off looking at your full history rather than just the Cortef trigger. I think neuropathy suggests some of sort immune issue, whether viral or autoimmune.

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Katybug,

Which MCAS doctor do you see? I was a patient of Dr. Afrin's, but he is relocating to Minnesota. He is currently in South Carolina, but obviously he is going farther away. Thanks in advance.

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I see Dr. Michael Mardiney, Jr. (the Jr. is important as he has 2 sons that practice with him). He isn't touted in the MCAS world as an expert but he knows about mast cell disease and is very engaged in treatment. He also stays current on research. He's in the Baltimore/Washington area (several offices he travels to between the 2 cities).

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Thanks, Katie. I have a different experience than you. I found it more worthwhile to continue with Dr. Afrin. But I am glad he is a help to you.

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Most doctors just want to treat symptoms. After awhile this does get old, especially when you do not see any improvement with POTS symptoms. Then you want to start taking matters into your own hands. You can do this with diet. Using supplements is a bit tricky and helps if you have a doctor on board that's willing to test for defiencies.

It took us about a year, to realize that the infections were making Tyler's POTS condition worse. Our trouble was finding an immunologist that would start hunting and we also had to have a referral from GP to get us to one. However, our insurance has also started accepting the referral from our cardiologist because of Tyler's condition. This was a long process.

Natural Path and functional doctors seem to be doctors that will dig more into complicated conditions.However, our insurance does not recognize them as providers. Other states do recognize them as a provider, so be sure to check with insurance. Otherwise medical expense may be steep.

All I can say is that it takes time, money, and energy to find a doctor that's willing to look for underlying cause of POTS. My heart goes out to everyone that is in this situation. You just have to keep making the appointments until you find a doctor thats willing to help with your medical condition.

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