Medical Alert bracelet ... both high and low blood pressure

[Guest guest]

In a message dated 10/30/2003 11:06:57 PM Eastern Standard Time,

VEDS4@... writes:

> You have both high and low blood pressure? Do they alternate, or each

> arises in a different situation, or what? What type of EDS do you have?

We are not sure. I have a referral for DNA EDS testing. I do have vascular

malignant hypertension. I have EDS, my mother and father seemed to have it too.

I spent my whole life with two parents both in a lot of pain. Unfortunately

they found out later they were distantly related.

I got my formal EDS diagnosis May this year. I have Autonomic Dysreflexia

24/7. Later I was told it was EDS causing or contributing to Autonomic

Dysfunction. I also have unilateral renal agenesis -- only have my left kidney.

My one

left ureter kinks and that is known as nephroptosis. When it kinks due to my

soft tissues, I appear to have kidney failure ... unless I move and lay on my

right side. When it unlinks, I get flank pain " that I cannot feel -- pain

insensitivity or the result of sensory nerve damage. " When my bladder suddenly

fills, I again get BP spike. This pain I cannot feel or " noxious trigger " causes

a

reflex BP spike. I do not need to mention what my megacolon does to me. Bowel

gas or distention is a major cause of dysreflexia.

I suppose, because of the EDS and my stretchy blood vessels I tolerate BP to

over 300/200. Then, immediately the BP might drop to hypotension levels as low

as 40/30. [Note: when my BP drops I never faint -- instead, I have brainfog

or my IQ drops a hundred points.] This is with or without POTS symptoms --

meaning low BP on standing with fast heart rate.

Today at the hospital with my husband in ER, my BP dropped to 98/60/54 and

then to 74/39/96. Before that drop my BP was 200/184/88. After the 74/39 BP drop

the BP spiked back to 214/124/94. This can happens multiple times a day

anytime I move, walk or sit too long.

Going on to other problems, I have megacolon, giant colonic diverticulosis or

bowel duplication and/or fistula, MANY multiple old bowel excoriation,

Cushings disease, past Acromegaly, major dental problems for maxillary

insufficiency, atrophic macular degeneration, holes in retina with lattice

pattern,

atrophic vaginitis, rectocele, rectal prolapse, vagina prolapse. Did I mention

my two

abdominal myomectomies, hysterectomy, ovarian tumors, and suspected AVM? In

other words I am a mess. But I look healthy. Just like my mother. Finally, the

most unique problems is I heal too fast. Possible due to the Acromegaly or

hyper metabolism. I heal fast but the tissues rupture if I take certain

medications including steroids, Lidocaine and antibiotics. My metabolism is also

influenced due to the catecholamines release. I know I over answered your

question,

but I am having a very bad day.

Yesterday, I met with my EDS Ph.D. doctor. He told me I needed a medi alert

bracelet and that I had just one thing wrong with me -- EDS. Yesterdays his

referrals were for catscan with contrast and CBC to rule out renal

insufficiency.

The doctors never can understand why my one kidney is okay. Stretchy kidney I

suppose. Caro.