Dr. Clair Francomano formerly of NIH

[Guest guest]

In a message dated 4/18/2006 7:00:09 A.M. Eastern Daylight Time, dave@... writes:

I have never met anyone who took K-dur for that long.

The potassium made my double colons work. Not that anyone knew that back then. About the double colons I mean..

Spiro will make K rise, often, so watch your K.

I've been tested twice since December 2005. The K is now normal. I was taken off of Kdur and all my other BP medications. All of my doctors are waiting for me to see this EDS specialist so they can find out if I have a type of EDS that can tolerated surgery. A cause of my hypertension spikes were found in 2004. Last year it was confirmed to be a left outpouching that traps gas and fluids. That cause me to have terrible Dysreflexia every day. All I want is for the GI specialist to enlarge the opening. To do something!! Instead he says I am too complicated for surgery with my labile hypertension and unknown type of EDS. He is willing to finalize his opinion after I see Dr. Francomano.

Get tested weekly or more, according to your medical team. Hypotensive spikes can also be related to the other stuff you are doing, mixed with angiotensin balancing all of a sudden with lowering aldo via Spiro.

I've always had low BP. My relatives have very low BP. It is just with my BP lower, my doctors are taking a moment to notice.

Have you had plasma aldosterone, renin and cortisol, with a 24-hour urine to back that test?

Tests I had were up and down. low, low normal, normal, a little high.

Dr Francomano unlike others will know about my dysautonomia, cloaca, moderate carotid FMD, solidary kidney and colon duplication. I retain medicines on the left. I had tests done in the hospital in 2000. But I was on Prednisone IV for three days. They only tested me when they saw my beard growing in.

>>>Any thickening of the heart muscle(s)?

no

>>>Eyesight problems?

no. I mean nothing new.

The genetic specialist?

Dr. Clair Francomano formerly of NIH now at GBMC. She studied at Yale. http://www.gbmc.org/genetics/harveygenetics/Staff/francomano.cfm

The Yale test?

??

Dave

[Guest guest]

On Apr 18, 2006, at 11:54 AM, CDillardda@... wrote:

>

> In a message dated 4/18/2006 7:00:09 A.M. Eastern Daylight Time,

> dave@... writes:

>> I have never met anyone who took K-dur for that long. The potassium

>> made my double colons work. Not that anyone knew that back then.

>> About the double colons I mean..

>> Spiro will make K rise, often, so watch your K.I've been tested twice

>> since December 2005. The K is now normal. I was taken off of Kdur and

>> all my other BP medications. All of my doctors are waiting for me to

>> see this EDS specialist so they can find out if I have a type of EDS

>> that can tolerated surgery. A cause of my hypertension spikes were

>> found in 2004. Last year it was confirmed to be a left outpouching

>> that traps gas and fluids. That cause me to have terrible Dysreflexia

>> every day. All I want is for the GI specialist to enlarge the

>> opening. To do something!! Instead he says I am too complicated for

>> surgery with my labile hypertension and unknown type of EDS. He is

>> willing to finalize his opinion after I see Dr. Francomano.

>>   Get tested weekly or more, according to your medical team. 

>> Hypotensive spikes can also be related to the

>> other stuff you are doing, mixed with angiotensin balancing all of a

>> sudden with lowering aldo via Spiro.I've always had low BP. My

>> relatives have very low BP. It is just with my BP lower, my doctors

>> are taking a moment to notice.

>>     Have you had plasma

>> aldosterone, renin and cortisol, with a 24-hour urine to back that

>> test?

> Tests I had were up and down. low, low normal, normal, a little high.

>  

> Dr Francomano unlike others will know about my dysautonomia, cloaca,

> moderate carotid FMD, solidary kidney and colon duplication. I retain

> medicines on the left. I had tests done in the hospital in 2000. But

> I was on Prednisone IV for three days. They only tested me when they

> saw my beard growing in.

>  

> >>>Any thickening of the heart muscle(s)?

>  

> no

>  

> >>>Eyesight problems?

>  

>  

> no. I mean nothing new.

>>   The genetic specialist?Dr. Clair Francomano formerly of NIH now at

>> GBMC. She studied at Yale.

>> http://www.gbmc.org/genetics/harveygenetics/Staff/francomano.cfm

>  

>>     The Yale test???

I thought you might refer to the test they do there for GRA

(glucocorticoid remedial aldosteronism, the genetic version).

>> Dave

>

>