As Clear As Mud...

[firewatcher]

Oh bother...

I saw my PCP and two of the three endos this week to go over everything from Vandy and I am still "unexplained!"

My PCP said "great, go back on your meds."

Endo #1 said it's not POTS because his test results of catecholamines show that I am not hyperadrenergic, but it IS diabetes insipidus.

Endo #2 said it IS POTS and it's NOT diabetes insipidus.

The next doctor's appointment I think I'll skip the test results and just bring a daisy (to pluck the petals), a "magic eight-ball" and coin to flip.

Is there such a thing as diagnosis by consensus?

Who do you trust?

[jump]

You know, this might sound crazy, but maybe you have to trust yourself in this case.

I'm sure you've read up on these disorders. Which ones really feel like they describe your symptoms? Did you read about one and say "bingo! that's me!" Did you read anything that made you say "hmmm, maybe not"?

I think we've all done this to some extent, like when our doctors tell us we're "just anxious" and we say "uh... no." Can you apply your gut instinct to this as well?

And then use the 8 ball as a back up. Ooo, or how about a Ouja board???

Sorry you're dealing with this,

jump

[Ernie]

Hi,

I think that sometimes it's hard to get a clear cut diagnosis because either your symptoms are your result are not clear cut. Sometimes your result are clear cut but the doctors don't know enough about the disorder to be able to diagnose it.

I would say to try the meds for POTS and see if it works.

Did Vandy say you have POTS?

[firewatcher]

Ernie, Dr. B at Vandy said "Hyperadrenergic POTS and Partial Diabetes Insipidus."

Jump, I'd get a divining rod, but it would just point to my bladder!

Either way, everyone is at least agreeing that "hey, that's NOT normal." Unfortunately my labs and other tests are not clearly pointing to specific diagnosis on this stuff. I hate being weird. I keep hearing " I had this one patient, one time, who was not entirely like you, but..."

[Megan]

Oh dear! That does sound confusing. So why aren't your endos going with what Vandy said? Good luck figuring things out!

Meg

[Ernie]

Hi,

If Vandy says both diagnosis then I would ask my doc to treat me for both.

[firewatcher]

Hi,

If Vandy says both diagnosis then I would ask my doc to treat me for both.

Fortunately, he is. My PCP says that regardless of what it is, the treatment is the same: as long as I feel better on the meds and it does not screw anything else up...take everything.

Unfortunately, Vandy and all my other docs have said that there is an undiagnosed endocrine issue that is messing up several other things, so the dx of either will point toward where to look next for that missing piece of the puzzle.

Thyroid will mess with the hormones, pituitary would mess with the hormones and cause DI, hypothalamus would mess with everything...soooo, right now, I'm a well scanned pincushion.

[Guest Sandy Sims]

Ok, here I go again. <chuckles>

Back on my soapbox!!!

You all are sick of hearing this by now I know.

But I gotta keep saying it!!!

For two years of my life I will NEVER get back I had all the symptoms of dys--and the diagnosis of hyperadrenal orthostatic intolerance as well. I tried beta blockers, alpha blockers, all the usual drugs.

And was still sick.

I kept going to doctors telling them I had a high pulse rate when I stood--or sometimes even in bed at night it woke me--and my BP was on the floor--or thru the roof when I went on Beta blockers. My adrenals surged constantly it seemed--making my life a living h#ll.

Why was my body going into shock! (Cause that's what this is folks!!!)

Then one day I met an endo who told me I had pre-diabetes and gave me metformin (non-narcotic, non-mood altering, non steriodal drug!!!) and a dietician.

BOOM!

I'm well!!!

I think sometimes we get "used" to the idea of having an odd illness--and perhaps miss the obvious. Also I think we get used to being sick--acceptance can be a bad thing.

But the facts are pretty obvious if you run Google for hypoglcemia/hypergycemia you'll find all your symptoms--and vitamin def--and immune dysfunction--brain fog--autonomic dysfunction--and pain--and swollen tummy--and GI troubles--and ALL the rest!!

And here's the REAL up side to this.

THERE'S A CURE!!!

With autonomic dysfunction, by ALL it's many names, there IS NO CURE!!!

Why not first try the road that leads to a simple cure and simple to treat illness that EVERYONE WILL listen and KNOW you're sick when you tell them you have it and WILL know how to treat it?????

Who knows it just might work for you too!

Please listen. <down on knees begging>

'Cause if you DO have blood sugar issues and don't treat them you will NEVER get well again.

Also, I REALLY freaked--it took ALL my nerve to try--yet again--another pill.

But the facts are, there's no point in going to a doctor if you aren't willing to try the cure suggested.

PM me--I'll give you my phone number--we'll talk. The ONLY reason that I can think of that I went thru this is to --maybe--help others in the same trouble.

Hope this helps,

Sandy Sims

[goldicedance]

Re: Diabetes Insipidus

From what I understand, it is quite difficult to diagnose DI. I was told my a nephrologist after the water deprivation test that I definitely had DI. I went to the Endocrinologist that I had seen in the past. He thought my symptoms could be DI but he wasn't sure. (Can you imagine a doctor with the ability to admit he wasn't sure. )

He referred me to a doctor at Georgetown University Hospital--Dr. Joseph Verbalis, who specializes in:

Pituitary diseases

Disorders of water metabolism (DI, SIADH)

Adrenal disorders

He ruled out DI.

If you still are worried about DI and its cause and a trip to DC is possible, I would highly urge you to see Dr. Verbalis.

Lois

[firewatcher]

Re: Diabetes Insipidus

From what I understand, it is quite difficult to diagnose DI. I was told my a nephrologist after the water deprivation test that I definitely had DI. I went to the Endocrinologist that I had seen in the past. He thought my symptoms could be DI but he wasn't sure. (Can you imagine a doctor with the ability to admit he wasn't sure. )

He referred me to a doctor at Georgetown University Hospital--Dr. Joseph Verbalis, who specializes in:

Pituitary diseases

Disorders of water metabolism (DI, SIADH)

Adrenal disorders

He ruled out DI.

If you still are worried about DI and its cause and a trip to DC is possible, I would highly urge you to see Dr. Verbalis.

Lois

Lois, after an overnight fast, what were your osmolality numbers? What did Dr. Verbalis say it was and how does it impact your treatment?

Thanks,

Jennifer

[EarthMother]

Here's one of my favorite articles by Sharon Begley brain scientist talking about SSRIs...

http://www.ifred.org/PDF/WSJ_111805.pdf

The article describes how we don't know "jack" about how SSRIs work, that there isn't any "Not a single

peer-reviewed article ... support claims of serotonin deficiency in any mental disorder."

The article goes on to postulate ... "A clue to how SSRIs do work comes from how long they take to have any effect. They rarely make a dent in depression before three weeks, and sometimes take eight weeks to kick in. But they affect serotonin levels right away. If depression doesn't lift despite that serotonin hit, the

drugs must be doing something else; it's the something else that eases depression. The best evidence so far is that the something else is neurogenesis -- the birth of new neurons. "

My sense is this is why SSRIs work for so many disorders ... from pain to anxiety to OCD etc. Some version of if the Pill fits wear it, I suppose. Isn't it also true that often we don't even get a diagnosis until they give us a pill and it improves our symptoms! Then they say ... well you must have X because you got better when we gave you pill Y.

Does knowing this help me stop searching for a diagnosis? No. But at times it gives me a bit of peace knowing that we really know very little even about things we think we know so much about.