World's Fastest Diagnosis

[JenniferInOhio]

I'm not saying this condition is nursing 101, it is far more complicated, I am saying that's what almost all doctors or nurses will say the problem is, with those particular symptoms, because they have no clue what else it could be. I would guess the doctor that got this thread started with his very quick diagnosis was thinking the same thing most other doctors uninformed about OI do. And I am guessing that's what K meant and I agreed with her. This just comes from personal experience....morgan

Morgan - I totally understand what you are saying. I agree. I was being sarcastic in my earlier post - but it wasn't directed at you (I just wanted to clarify)

[morgan617]

Oh not at all Jennifer! I totally agree with you! I wasn't offended at all, I was just saying that if you don't know know or understand there are other reasons for our body acting hypovolemic, that's where it's going to go.

I totally agree with the psych part too. I wish doctors that don't understand would just admit it, as opposed to becoming psychiatrists in a heart beat! After having been a nurse forever, I know we can be guilty of judging people, so I can't be offended by the truth. My only defense is, when a doctor has years more study than a nurse and doesn't get it, we can't really expect a nurse to. Although I used to study things I didn't get and did butt heads more than once with them...(I also got into trouble for it)

Thanks for being concerned, but there wasn't any problem.....

[JenniferInOhio]

Morgan

[pastordari]

This is such a difficult thing.

Wonder how we could get Dateline to do a follow-up? Or maybe House could have a ANS/POTS patient on his floor.

That would get this illness more attention.

I too, was diagnosed rather quickly when you think about it.

Didn't feel quick at all as I was going through it.

However, a poor man's TTT was done by a Nurse Practitioner.

She knew low volume and salt/fluids. Nnothing beyond that.

The diagnosis is only the begining of the frustration.

Wish more docs knew more about this - or had even heard of it.

My current pcp is from Pakistan and he has not a clue. However, he does know what he doesn't know so he lets the ANS doc handle ANS issues. This is a blessing within itself. My hope is that the Pakistanni doc will learn from my specialist and one more doc out there will know more about what to do with us!

[Eli6596]

Sophia,

I think you might have misunderstood my comment about "simple". It is simple to diagnosis tachycardia by just feeling that the pulse is greater than 100. As some-one else said, it is not simple to state the cause and treatment for the tachycardia.

I understand your anger. When I became disabled, unable to work and on bedrest due to POTS during my first pregnancy, I too was blown off. I saw two cardiologists who attributed my dizziness to stress and normal pregnancy. I was a neurology fellow at the time. Even though I am a doctor, I was STILL blown off. During my otherwise excellent neurology training, I NEVER was taught about POTS or neurocardiogenic syncope. When I first asked Dr. Low at Mayo if I had POTS, he said no. HOwever, tilt table testing off meds showed that I definitely have severe POTS. It was years before I got the correct diagnosis.

I have more anger over how my fellow, cold, callous doctor colleagues treated me when I could not take call.

I can tell that you have a lot of anger. You are entitled. However, I have learned over the years that my anger just ate a hole in MY soul while the jerks kept on ticking happily. At some point, I had to forgive and release my anger. It was just dragging me down.

I saw a pt for the first time a few months ago for migraines. About 2 to 4 weeks ago, she first told me about her dizziness. I diagnosed her with POTS based on her TTT. She complained about how long all the tests are taking. I just smiled and said that she has been diagnosed very, very quickly (a month compared to my years!!!) We ARE making progress but I know it is not quick enough. Hopefully we have served as learning cases for the medical community that needed practice?!

I wish you peace and happiness

K.

[morgan617]

Eli, I was really horrified a few years ago, reading about how poorly you were treated by your peers! I have never forgotten that, probably because in my years of nursing, it was, for the most part, such a good old boys club, with the doctors being such a close knit, protect each other community , at the cost of the patients at times. I realized if doctors were being treated that badly, by their peers, we really can't be surprised at how the lay person is treated. Disappointed, but not surprised.

I have since seen my very brilliant, well respected internist being treated as poorly as you have been, but for trying to help me! Many doors slammed in his face. I don't ever push him anymore to get me into specialists, because he really can't get any further than me. So the times, they are a changing. We can only hope that as time goes by, more doctors will be more willing to look at the "bigger pictures." I have also realized that all my anger at doctors and others does, is make me sicker. It's just not worth it. I still have my share of "moments", but am working on it... morgan

[Sophia3]

Eli

Sorry, don't recognize your name in this brain fogged moment.

I have NO lingering ANGER or resentment. I have had compassionate care from day one of my mysteriouos chronic mono and later aka POTS. Just clueless that entire hospital!!! Yikes.

Just never been in the hospital much and grew up with family that worked in them or did surgery in them so heard all the 'behind the scenes' stuff one should not know about! ..and that place was NOT a good experience. Out of 17 years, that was the worst. I was lucky. I have heard horror stories of OTHERS repeated ER experiences, etc, for over a decade. It is amazing what some docs lable pts and how MANY ER treat folks.

My early CFS doc was nice, and the doc I have now is an ANGEL , does email, shares pictures of his trips on occassions. :-) If I email him about something (a couple times between visits) he will email back "What, no new pics to share" EVERYBODY should have such a sweetheart.

I was just blown away from how my "tachycardia" turned into a mental illness from a T wave printout and mostly "NORMAL TESTS"! LOL. Oh, except for a mitral valve insuffiency which many have...or they have prolapse.

I just had me a flashback the other night. PMS moment...uterus is now gone, thankfully, but mood swings must still be ovary induced. I guess it was because tachycardia has never been connected ALWAYS to hypovolemia. I had DISCUSSED it with Dr. Grubb but even he did not always say the dots connected...as mentioned the narrow pulse pressure is more of a hallmark

Course MANY docs do not RECOGNIZE narrow pulse pressures and think it's a BP monitor error. Unless you are bleeding a lot. Dr. Bell mentions this in an old article some years back but I have digressed way too long.

No need to wish me peace. After 17 years out of the work place I have found much to fill my days inside the house and appreciate the times I get out. And the wonderful sites of birds, squirrels at the feeders and birdbaths...

and all my flowers until the FROST comes around!!

My low maintenance impatiens and Hostas out the front walk

And one of my coon friends! takes peanut butter sandwich from me has I slide it thru a partially open patio door! Critters give me such pleasure, day and night!!

[Sophia3]

P.S. Eli

I missed you were a doctor yourself until I just reread your post, and that must have been terrible indeed to be treated so badly by colleagues. My attention span is dreadful in recent months...forgive me for not addressing your issue in your post to me.

Oh, I NEVER HARBOR resentment. I believe in dealing with things as they transpire and MOVING ON. That Doctor of Osteopath that put me in the hospital, but NEVER came to my room once, even while IN the hospital? He got a blistering certified letter after his most shoddy care and never had the decency to respond. Doesn't matter...I felt wonderful once I dropped it in the mailbox and it was stern yet polite. Something you could read to an elderly person or a minister/priest type. HA.

I found other nice doctors..a sleep specialist who while clueless about the POTENTIAL of ANS issues helped me for free after Medicare quit paying and allowed me to be in a few sleep studies including one for FM using GHB that allegedly CURED FM in some people but didn't do squat for me. I have had many chances at alternative things to help my cause and once we found out it was OI, well, after so many years, you know the deal is done.

you learn to move on. I am huge on confronting an issue and NOT letting it fester. Harboring grudges INDEED takes way too much energy that I could use to brush AND floss my teeth. I believe in nourishing my spirit with laughter and my cats, friends on the phone or in email, and low energy distracting hobbies I can do from home

But still, an astute doc that felt a pulse and said hypovolemic, maybe not a wizard but a doctor I would love to have dinner with (while eating in my recliner!) and picking his brain. And depending on his outlook about healthcare, would probably get my VOTE!!

[lthomas521]

Do some doctors disregard narrow pulse pressure? Eeek! Sort of like NASA failing to recognize the ozone hole because their computers were programmed to disregard "spurious" readings. A British scientist with an old-fashioned machine found the hole. He didn't believe it at first, so he got a second old-fashioned machine, and they both gave the same answer.

If they don't trust the narrow pulse pressure reading, why don't they just feel your wrist?

[Eli6596]

Sophia,

I am glad that you have had some good experiences with the medical profession. Bad experiences make me appreciate the good experiences even more. I start feeling dizzier than usual if I even type a few lines of negative thoughts, or I have a flash of anger for even a few seconds.

Morgan,

Hi, thanks for mirroring my thoughts.

Lthomas (sorry if mispelled),

I suspect that most doctors do not feel pulses. They let the nurses take the pulse and just see it as a number.

I wish peace and happiness for everyone. We all deserve it, and I personally can never get enough of it!

K.

[Sophia3]

Speaking of pulses...I was concerned my HR was dropping for the first time ever when I was trying to work out on the treadmill (ALWAYS use it flat, can't do hills or slope) The machine checks your HR and i would feel rotten and notice my HR around 70 (VERY LOW FOR ME when upright)

I emailed my doc as I progressed to make a small workout for myself, lower body machines and walking. He said maybe the machine is only catching HALF the beats. DUH.

That was it. I have since noticed that like humans, these aerobic machines do not count all my beats. I step from machine to machine (and must look like some crazed GOLDILOCKS looking for something to count my HR "just right"

It can happen on multiple so I must have a thready pulse. Anyway, I wish some good docs like the one Thomas met were there to double check real quick. Ha.

[Sophia3]

Ok. This article on Hypovolemia is 10 years old but interesting IF you have not seen it. Dr. Streeten has since died after this was written (He can be seen on NDRF tapes) Dr. Bell wrote this article.

Dr. Streeten even said on NDRF tapes he would have pts STAND with attending nurses over TTT because people don't TILT they stand!! But for fainters, TTT is "safer" though not always an exact science...*sigh* except for some of us and even THEN interpretation is EVERYTHING.

Talks of multiple bp readings, SYMPTOMS and the test for blood volume. But since this article was writ, I have read many folks mentioning OTHER alleged Tests of blood volume.

But as some of us know, sometimes the old 'clinical symptoms' of tachy, pulse pressure and the like can be enough to TREAT us with meds to build blood volume.

I just realized this was bookmarked on my room mates page all the time. Sorry my brain fog did not remember this a few posts ago.

http://web.tampabay.rr.com/lymecfs/hypovolemia.htm