Don't Know

August 10, 2006

Aloha!

I have been through over 2 years of poking and proding, from Dr. to

Dr, and a whole lot of stress, frustration, and tears.

I used to get jolting type pains, but I never thought much about them

until one day 2.5 years ago I started getting a pain in my head that

occured every few mins for several hours. I was in tears, went to the

Dr. who said since she didn't see any redness on my head than there

isn't anything to worry about. Won't go into the details what my

response was. But the pain subsided. Then one night I woke up in the

worst pain ever, I couldn't walk. My husband took me to the ER not

knowing what was going on. My BP ws 176/140, which pretty much showed

something was wrong, and the Dr. proceded to tell me since I am

allergic to many antibiotics he wouldn't know how to treat me. I had

my husband carry me out of there.

The Dr's here in Maui, are overworked and don't really seem to care

about the patients. I've never seen Dr's so bad as I have here.

Anyways for a month I was woken every night with this nerve pain in my

feet than into my hands. I couldn't work for a month.

The pain is like I am being electrocuted. It now happens randomly and

not in any one place.

I've had 3 MRI's, there is demylination, and some other lesions but

nothing that points to Ms.

I get heart palpatations which I have never had before. Feels like my

heart is jumping. I just had a cardiogram with a bubble test and it

came back ok.

Turns out my son had a cardiogram a few years back for palpations and

the feeling like something on his chest. He also informed me that he

gets the electrical type pains. He has hammertoe BAD in all his toes,

and he has nerve problems in his hand and atrophy in his left palm.

The only questionable problem in my families past is my great

grandmother had Parkinsons, all my elders have past and we don't have

any idea of anything else.

My symptoms seem to come and go, sometimes they are worse than other

times. The past few days my hands are so weak, I can't even open a

straw, open a plastic bag, zip and button my pants, and lord help me I

can't even wipe.

I don't know what it is that's happening, but I'm frustrated and I am

even more concerned that my son is experiencing the same thing now.

All my research keeps leading to CMT. Any thoughts? Would it be a lot

to ask the Dr for a gene test?

Sorry for the lengthy draaaaaawn out note.

Thank you!

Karrie

June 8, 2012

What meds are you on now and what meds were you on when they tested you for PA? Do you have a history of low potassiums or "borderline" potassium levels?

From: hyperaldosteronism-owner <hyperaldosteronism-owner >Subject: Don't knowhyperaldosteronism Date: Friday, June 8, 2012, 6:22 PM

This message was accidentally removed. Apologies to the sender.Moderator--------------------FROM: delphine_payne@... DATE: Fri, 08 Jun 2012 22:52:32 -0000 SUBJECT: Don't know. Hello, I'm new to this group. I live in Australia and my GP felt I was a candidate for Conn's syndrome after an x-ray revealed and adenoma on my left adrenal gland. I went to see an endocrinologist at the hospital and had all the necessary blood and urine tests. I don't have the figures yet, but everything is normal, potassium, renin, aldosterone, hormones etc. and I have been sent away with no answers. I have many of the Conn's syndrome symptoms and have had for most of my life. Now that I am older (58) they seem to be here to stay. I did not have high blood pressure until

recently (165/85) am diabetic and have hypothyroidism. Do you have any suggestions as what to try next? The fatigue is difficult, especially as I am my husband's carer due to his illnesses. Look forward to your reply.

June 8, 2012

You may have other endocrine issues that cause adenomas other than Conn's, or

hyperaldosteronism. You may be like my aforementioned roommate at NIH (National

Institutes of Health, our national research hospital). She has Congenital

Adrenal Hyperplasia an Cushings with an adenoma, but no potassium or aldo

issues. Lot's of her other hormones are off...one day, they brought me copies

of her labs and I thought I was really screwed up! Progesterone was off, 17

hydroxy was off, aldo was ok, I cannot remember all of it, but a very different

picture than my labs. Both of us with adrenal hyperplasia, both with adenomas,

neither with the same diagnosis or treatment plan. She overproduces cortisol

and her adenoma produces cortisol, more than aldosterone. She has to take meds

that deal with the over androgen symptomology rather than MCB's although spiro

is a lightweight antagonist of adrogen. She's on a more powerful androgen

antagonist and in a study now that has yet to decide what to do about the

adenoma and cortisol. I can post when she tells me...shouldn't be long now.

>

> This message was accidentally removed. Apologies to the sender.

>

> Moderator

>

> --------------------

> FROM: delphine_payne@...

> DATE: Fri, 08 Jun 2012 22:52:32 -0000

> SUBJECT: Don't know.

>

> Hello, I'm new to this group. I live in Australia and my GP felt I was a

candidate for Conn's syndrome after an x-ray revealed and adenoma on my left

adrenal gland. I went to see an endocrinologist at the hospital and had all the

necessary blood and urine tests. I don't have the figures yet, but everything

is normal, potassium, renin, aldosterone, hormones etc. and I have been sent

away with no answers. I have many of the Conn's syndrome symptoms and have had

for most of my life. Now that I am older (58) they seem to be here to stay. I

did not have high blood pressure until recently (165/85) am diabetic and have

hypothyroidism. Do you have any suggestions as what to try next? The fatigue

is difficult, especially as I am my husband's carer due to his illnesses. Look

forward to your reply.

>

June 8, 2012