Re: My illness and questions

[Guest guest]

At 06:07 PM 1/1/2001 +0000, you wrote:

Recently I had an exray of foot

done showing soft

bones possible osteopenia and the doctor says I brushed the bones in

my foot.

So I am sent for a recent dexascan and have not received results

yet.

Meanwhile I am told to take even more calcium and vitamin D.

I was

already taking calcium . I also have gum disease shrinking away my

gums. The doctor says this is a related problem.

I have had throid blood test and calcium levels tested often enought

for nothing to show up on test to raise any question of problem in

those area even in recent past year.

We found research on the Parathyroid on the web and most of my

problems over the years sound like it could be due to a parathroid

not working properly.

And can be fixed by removing the bad parathyroid

Has any one have any experence with this same illness?

Jeanie

Jeanie,

Although not exactly the same, I have had something that may

interest you. I suffer (ed) from hyperparathyroidism, and have had

three for the four parathyroid glands removed.

Hyperparathyroidism is a condition where an abnormality of/or

tumor on, one or more parathyroid glands, causes the glands to produce

too much parathormone (parathyroid hormone). This hormone regulates the

way our bodies handle calcium and phosphorus. Hyperparathyroidism leads

to a rise in blood calcium and a fall in phosphorus. Calcium is removed

from bones, resulting in increased fragility, muscular weakness, reduced

muscular tone, and general neuromuscular hypoexcitability (slow nerve to

muscle reactions). Generalized osteitis fibrosa and osteitis fibrosa

cystica (decalcification and softening of bone, and nephrolithiasis

(kidney stones), cysts form and tumors may develop) are also associated

with this condition.

This condition causes hypercalcemia, where the body leaches

calcium from the bones and puts it in the bloodstream, where it coats the

arteries, heart, joints and kidneys. Left untreated (or undiagnosed in my

case) the calcium is able to do a lot of damage to the heart, arteries,

kidneys, joints, and make LOTS of stones (...not only kidney stones.

Stones of the salivary glands are also common for people with this

condition).

You don't have to have all the symptoms. I made a lot

of kidney stones, but the doctors tell me, that other people with the

condition, don't make stones. Tests for hyperparathyroidism

include blood tests for parathormone, calcium and phosphorus. A 24

hour urine collection is also done, to check the levels of calcium that

is passing through.

Since your doctors have you on calcium supplements, I'm

confused if he thinks you're hypercalcemic. Sounds more like

hypocalcemic, in which case, surgery would not be necessary. It's

important to get a proper diagnosis (I didn't get one for many years, and

am in terrible health today, because of it). With me, it took

changing doctors, and the new doctor sending me to an endocrinologist, to

figure out what was wrong.

Good luck, and feel free to contact me on this list, on my

parathyroidism list, or privately. Some hyperparathyroidism

info is on my web page.

Owner of Parathyroidism E-Mail List:

A support group for people with hyper or hypo parathyroidism.

http://www.smartgroups.com/groups/Parathyroidism

or

mailto:Parathyroidism-subscribesmartgroups

E-Mail:

mailto:tabcobee (DOT) net

Web Page:

http://www.bee.net/tabco/

Net Pager:

http://wwp.mirabilis.com/3106983

ICQ # 3106983

[Guest guest]

Hi Jeanie,

"I am 42 for many years now I have greatly struggled with CFS?"

Ahhh You are not diagnosed? I was "Labelled" with CFS for about 8 years before almost dying from complications from sarcoidosis and anemia/infections etc so I tend to be skeptical of anyone who has a Dr who labels them with CFS.

Do you know what blood tests you have had and what the results are? This is very important.

I would strongly urge you to get just the general blood tests done, CBC, ESR, CRP, Metabolic Panel. These will show your blood cells and things like anemia (which can cause fatigue etc), ESR & CRP show inflammation and if are raised means you have an illness, and the Metabolic studies show how your body is using vital minerals etc, again a good measure of how you are functioning.

"And I have many allergy's one to dairy products and I have periodic leg movement disorder."

Are you on medications for this? Has anyone tested you for neuropathies or seizure related things like myoclonus? Your leg - does it just jerk for no reason?

"I have had many test done. I have seen many doctors and specialist."

*hugs* Its a horroble process to go through

"I have a complete panel MRI's done and they find nothing."

MRI of what areas hon?

"mean while I am told to drink tonic water each night and I take nightly muscle relaxers for periodic leg movement."

What medication are you on and does it help?

"So I am sent for a recent dexascan and have not received results yet.Meanwhile I am told to take even more calcium and vitamin D. I was already taking calcium . I also have gum disease shrinking away my gums. The doctor says this is a related problem.I have had throid blood test and calcium levels tested often enought for nothing to show up on test to raise any question of problem in those area even in recent past year."

Just throwing in random suggestions, has anyone tested your pituatry function? Well hope these suggests all help. Its horrible looking for whats wrong when Dr's dont tell you what they are doing. Just remember that you are the one that hires the Dr - they work for you cause you pay them. So if they are NOT working for you FIRE THEM and get new Doctors!!!!! Your life is worth it!

*gentle hugs*

Love Aisha

[Guest guest]

I have had throid blood test and calcium levels tested often enough

for nothing to show up on test to raise any question of problem in

those area even in recent past year.

***Most GP's only check the tsh level of your thyroid. That is not

enough. You need to also have your T-3 checked. Because of this, it

does not get diagnosed until a person has some serious symptoms.

I have been there and it is not fun.

We found research on the Parathyroid on the web and most of my

problems over the years sound like it could be due to a parathroid

not working properly.

And can be fixed by removing the bad parathyroid

****Because of all my endocrine problems and the brain tumor, I have

my parathyroid checked every year. If my memory serves me correctly,

ones calcium level is checked when checking the parathyroid.

*** My *unprofessional* yet *experienced* advice to you Jeanne is to

go find an Endocrinologist that will check this out for you.

Has any one have any experence with this same illness?

Jeanie

[Guest guest]

I know the parathyroid has something to do with

calcium. When my thyroid was removed, they had to

check me frequently right after the surgery. There was

a test they did by " snapping " their fingers on the

side of my face. If I had a spasm, it meant that the

parathyroid wasn't working and they would have had to

give me calcium. I too had a lot of problems before

they diagnosed the thyroid and then had three

surgeries, the last time they finally removed it. The

dr. tells us now that it seems to be heridatary as my

sister, mom and aunt all have thyroid problems. They

have told us to make sure our daughters are tested. My

daughter at age 25 asked for the test and was told she

was too young. She told him " bulls**t " my mom was 24,

Test me! " Luckily, her's was not acting up but she has

learned you have to speak up when dealing with drs.

=====

searching for Deborah

dob 1/14/57 in nna, Fl

Relinquished in Chicago, 1961

brother and 5 other siblings searching

Half-sib found 1-16-00!

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