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General Pots Diagnosis, How Do I Now Get Specific?


mancmm19
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Hi All,

It is Friday, my favorite day of the week because I get to lay in bed the whole weekend! :) I hope you are all doing well. I have a quick question...I was diagnosed with POTS after a positive tilt table test a little over 2 months ago. My doctor seems top believe that exercise is the cure as the meds will not work for me, my BP is too low. I need to find a doctor who knows more about this and am thinking of traveling into NYC. However, I hear a bunch of people posting about "types" of POTS. Hypoadrenic(bad spelling) I think was one that someone mentioned. What are the different forms of POTS and what tests can determine what type you have? I am eager to get as many answers as possible and begin getting better...too many years have been wasted feeling like death and worrying everyday that I'm on the verge of dying! Please post back if you have any comments...I need a more specific diagnosis!!

Have a good weekend :)

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There are lots of meds you can take if your bp is low--e.g. midodrine, florinef as just two possibilities. You indeed should find a doctor with more experience treating pots.

Yes. Midodrine lets me function somewhat in the morning. I don't think I could make it right now without my morning dose. I haven't been taking my afternoon dose much lately, but when I need to I do.

I'd see a specialist too.

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The different forms of primary POTS are:

- According to Dr Grubb:

1. Autoimmune POTS causing excessive vasodilation in the legs or lower body caused by an autoimmune attack on the nerves that regulate norepinephrine in the lower body. This creates what they call distal hyperactivity in other nerves to compensate.

2. hyperadrenergic - caused by impaired reuptake of norepinephrine, causing excessive vasoconstriction and POTS symptoms.

There are several problems with these theories which ive detailed before.

According to the doctor Im inclined to believe far more because of the depth of the research involved:

Dr Julian Stewart:

1. High flow POTS - blood pooling almost exclusively in the legs caused by a autoimmune attack on the nerves that control vasoconstriction in the lower body

2. Normal flow POTS - patients are fine supine, but have excessive blood pooling in the stomach region and excessive vasocontsriction of hands and feet and arms and legs on standing.

3. Low FLow POTS - have impaired nitric oxide levels on veins causing reduced blood flow and vasodilation and excessive overactivity of the autonomic nervous system caused by excess angiotensin II levels. patients have paleness, symptoms when lying down and standing and vasoconstriction supine as well as standing.

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The different forms of primary POTS are:

- According to Dr Grubb:

1. Autoimmune POTS causing excessive vasodilation in the legs or lower body caused by an autoimmune attack on the nerves that regulate norepinephrine in the lower body. This creates what they call distal hyperactivity in other nerves to compensate.

2. hyperadrenergic - caused by impaired reuptake of norepinephrine, causing excessive vasoconstriction and POTS symptoms.

There are several problems with these theories which ive detailed before.

According to the doctor Im inclined to believe far more because of the depth of the research involved:

Dr Julian Stewart:

1. High flow POTS - blood pooling almost exclusively in the legs caused by a autoimmune attack on the nerves that control vasoconstriction in the lower body

2. Normal flow POTS - patients are fine supine, but have excessive blood pooling in the stomach region and excessive vasocontsriction of hands and feet and arms and legs on standing.

3. Low FLow POTS - have impaired nitric oxide levels on veins causing reduced blood flow and vasodilation and excessive overactivity of the autonomic nervous system caused by excess angiotensin II levels. patients have paleness, symptoms when lying down and standing and vasoconstriction supine as well as standing.

Rama,

Where would Dr. Stewart place someone like me who has excessive pooling in the hands as well as the legs?

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Hi,

Especially because you are located relatively close to quite a few knowledgeable drs., and that you want more answers, I would say that you may want to see a specialist. You are pretty close to Dr. Stewart etc... could you see them? Or someone else that is listed in NY. I think there are good drs. in PA and in Boston as well. I think that you should be able to find and get in to see someone that can offer further testing and answers. Which tests always depend on where you go and your symptoms, history etc....

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