You will never guess what happened

[Roselover]

OK Everyone, hold onto your hats. Get this. I arrive at the endo today. He walks in and greets us. Then he proceeds to tell us that there seems to be a bit of a mix--up. When my primary doctor spoke to him he understood her to say I had Pots Disease, which is tuberculosis that has settled in the spine. But he has actually never heard of POTS - Postural Orthostatic Tachycardia Syndrome!!!!!

NO - REALLY - My husband and I fought back the tears!!!!! We really thought we had finally found someone who understand and give us some help. BOO HOO!!!

Well, he was very kind and spent over a 1/2 hour with us giving us every bit of information he could about endo causes of OI. His best advice was that we need to, as he said "stop piddling around with doctors who don't know anything. Get in contact with one of the experts!" We live on the West Coast - this is a big decision, but we are praying about it and trying to consider what to do next.

I am so tired of being tired.

Roselover

[blackwolf]

Dear Roselover, I'm so sorry you had to go thru that. It seems to be a huge problem on the west coast. I am also in the search of a new local doc, though I have a few on the possibles list.

Are you worried about traveling or the expence? Either way I may have some info you might like to hear about.

National Patient Travel helpline 1-800-296-1217

National Assoc. of Hospital Hospitality Houses, Inc 1-800-542-9730

Both can help, though may take a awhile to get in touch with local groups. Also, many church groups have funding and help with any expences immediatly.

blackwolf

[Ernie]

I did not know that Pots Disease is also Tuberculosis!

I am sorry that your doctor misuderstood your diagnosis. What a waste of time and money. At least he was nice enough to explain what is OI. I hope you find a competent doctor soon.

Ernie

[morgan617]

Man, what a bummer! So sorry to hear this. I have decided it's not worth it. I tried my darndest as did my doctor. So I feel I've done everything I could. The doctors I see now aren't well versed in it, but at least they believe me and don't think I'm crazy. And I guess that's good enough for me. I'm sick and tired of being disappointed all the time. This way I'm not. It's not the way for everyone, but it has given me more peace of mind than I ever could have imagined. I hope you find the answers you need. morgan

[MightyMouse]

I've stopped using "POTS" as a diagnostic label when I go to new doctors. Instead, I say that I have "autonomic dysfunction" or "dysautonomia".

Often, the doc says something like, "oh, you have orthostatic intolerance" to which I say "It's more complicated than that. As a result of my autonomic problems, I have gastroparesis, wide swings in blood pressure and heart rate, bladder problems, migraines, persistent nausea, lightheadeness, dizziness, fainting, etc."

However, they often take my med allergies more seriously than my autonmic problems.

Nina

[MomtoGiuliana]

So sorry for your disappointment. The same misunderstanding happened to my sister when she consulted with a gp when her symptoms started. She told the gp that I have POTS and she suspected she did too. Apparently the term POTS also refers to tuberculosis of the spine--that was the only "POTS" this gp was familiar with. Once she saw an electrophysiologist, she got on the right track with a correct diagnosis and appropriate treatment.

I agree with Nina that "autonomic dysfunction" may be a better term to use with doctors that the POTS acronym. My specialist rarely uses the term POTS when refering to my condition--he calls it autonomic dysfunction. I guess like any other field, terms go in and out of vogue. Some terms are also easier to understand so they tend to get wider use.

Katherine

[Roselover]

Nina and Katherine,

You know I really like that idea about not calling it POTS but autonomic dysfunction! I noticed yesterday that this doctor, though not really familiar with POTS, only focused on on a drop in BP when standing. I have so much more than blood pressure problems! Sometimes, my BP is OK - but I'm not.

Thank you so much! This is really helpful - I will change the way I phrase it from now on and re-educate my Primary too! Thanks!

Roselover

[geneva]

OK guys, I am testing my memory here cuz I am too tired to do a search but this confusion with TB has come up before and someone here did do an internet search and I recall that the TB variety has two "tt"s as in POTTS.

I am like Nina in that I do not use POTS any more in working with the doctors or ER. The ER can never find POTS in their computers but they always seem to find something about dysautonomia.

[Merrill]

Geneva, you're right! Good memory.

[Guest Julia59]

Roselover,

Oh my gosh------------I have had more then one Doc call it POTTS---that is how the big mix ups can begin. YOU HAVE POTS, AND THEN YOU HAVE POTTS---TWO COMPLETELY DIFFERENT DISORDERS.

After seeing POTTS listed on my medical record more then once because of ignorance or a typo-----I decided to look it up in my medical dictionary that I had from going to school for medical terminology.anatomy/physiology & medical coding.

"POTTS" is a disease process that takes place in the spine after tuberculosis.

I agree that dysautonomia, ANS dysfunction---or the POTS form of dysautonomia is an easier diagnosis to understand. Just the spelling mistakes can make a mess of your records.

Julie :0)