What Does It Take For An Official Diagnosis?

[BelieverEM]

I finally got in to see a neurologist who specializes in autonomic disorders (after a 5-month wait), and even though I have EDS and Chiari (2 known causes of pots) she seemed very skeptical. She only half-believed my prior diagnoses, because my EDS was a clinical diagnosis (there is no blood test for the type I have!), and because she said my Chiari looks mild on the films. She agreed to send me for testing (the soonest appointment is mid-December), but scolded me for using a wheelchair and being in bed as much as I am, and said that my problems are likely due to being over-medicated (I'm on so many meds BECAUSE of increasing issues!), or being depressed, and claimed that I'll feel better if I get out of bed and exercise more. I have practically every symptom listed on these pages, but they vary from day to day, and I'm worried that when my testing day finally arrives, I'll be having a miraclously good day and the test won't show anything.

My question is this: what exactly is the criteria for diagnosis?

Thanks, Erin

[potsgirl]

Have you had a tilt table test done yet? What meds are you on? Who gave you your previous diagnosis and what were the factors they used? What does your BP/HR do? If you could give out a little more info, it would be very helpful.

Thanks,

Jana

[juliegee]

Hi Erin,

All it takes is a tilt table test and a knowledgeable electrophysiologist/cardiologist to understand the results. A rise in HR of 28-30 bpm when you are tilted up within 10 mins. is what it takes for a POTS DX. And, a precipitous drop in BP within 45 mins of an upright tilt is what it takes for a DX of NMH/NCS.

Don't worry about having a good day on TTT day. I bet your nerves will help precipitate symptoms. I always pray before I or anyone in my family has a medical test: "Please, Lord- let the TRUTH come to light." You don't want a DX of a disease you don't have. You just want the truth revealed.

Your doc sounds very unsympathetic. I know you push yourself to do as much as you can & be as active as you can. She's right that the more you do, the better you'll feel...but within your safe limits.

Let us know what you find-

Julie

[Tachy Phlegming]

To be diagnosed with POTS, you have to have a certain "je ne sais quoi."

http://www.thefreedictionary.com/je+ne+sais+quoi

By its very nature, that "je ne said quoi" is unknowable and indescribable.

In fact, diagnosis in medicine involves very deep philosophies:

http://www.springerlink.com/content/m1385r31581822u2/

http://emj.bmj.com/cgi/content/abstract/26/4/238

http://www.powells.com/biblio?isbn=9780792363224

With that in mind, it should be obvious that diagnosis does not really rely on scientific principles or highly accurate descriptions in professional journals, to wit,

http://www.pubmedcentral.nih.gov/articlere...i?artid=1501099 ,

but rather "feelings," highly technical and sophisticated "philosophies," and possibly, "constraints," (to be described elsewhere) of your expert (or non-expert, as it were) practitioner.

Do you have any other questions?

[BelieverEM]

I think that answered my question. They can't get me into the lab for a tilt table test for another 10 weeks, and the doctor will see me 6 weeks after that to go over results (so I won't know anything until February at the earliest). In the meantime, I was just wondering if there is subjective criteria (like Julie explained), or if it's really based on interpretation of how much they believe my symptoms.

[juliegee]

I think that answered my question. They can't get me into the lab for a tilt table test for another 10 weeks, and the doctor will see me 6 weeks after that to go over results (so I won't know anything until February at the earliest). In the meantime, I was just wondering if there is subjective criteria (like Julie explained), or if it's really based on interpretation of how much they believe my symptoms.

It's really not subjective- very concrete data. You can do a poor man's TTT at home & monitor how much your HR goes up in 10 mins. Lie down for 10-15 mins & have someone take your BP and HR. Then stand perfectly still for 10 mins (if you can.) Be sure to do this in front of a chair in case you need to sit down quickly. Have your partner take your vitals every minute & record them. It's much easier to catch POTS at home than NMH/NCS.

My son was the first DXed in the family. When I did the poor man's version at home, I was shocked by how symptomatic I felt (nauseous and lightheaded) just by standing still. BTW, my HR went up 60 bpm in 10 mins. My symptoms are better controlled now- don't think it'd be that bad now. One way to ensure symptoms is to not over-hydrate before your test. Dehydration (even slight) worsens our symptoms.

Let us know what you find out.

Julie

[erikainorlando]

I was so sick prior to my diagnosis that I really pushed to get a TTT and all testing as fast as possible. I didn't think I had POTS...I just had no idea what was wrong...but I knew that a wrong diagnosis meant that I wouldn't get well becasue they can't help with the wrong diagnosis.

Good luck.

Erika

[erik]

I have heard of people being diagnosed based on symptoms combined with a "poor-man's tilt" (or repeated ones, since patient is supposed to have been symptomatic for 6 months or something... right?) My possibly erroneous understanding is that when you stand up on your own, your muscle activity tends to assist your cardiovascular system (especially if you fidget) so if you show the signs during poor-man's tilt you are almost definitely going to show them on a real tilt table. Of course, the "controlled" environment of a tilt-table comes across as more "valid"... is definitely the "gold standard" of diagnosis, plus with that procedure they will sometimes try 1 or 2 drugs that can give better insight.

I was scheduled for visit to a doc for tilt table... I fax'd my home poor-man's results (spanning many months, including graphs, etc.) and he canceled me! He said it was best that I go straight to a specific autonomic knowledgeable EP cardio instead of wasting our time. This isn't a "diagnosis" (he cannot do that having never seen me , but an expedited step toward treatment (and perhaps "clinical call" diagnosis or eventual TTT elsewhere).

Just another variation... technically I'm still "in process" on diagnosis so I don't count.

[Notgivinup]

I had two TTTs. And some blood work. That's all.