Re: Re: Introduction/long

[Guest guest]

Hi, You're correct about Dr. T. and most docs who don't test for a lot of

things. He told me he treats patients, not lab reposts. But, he is my main

source of Minocin, so I make the trip once a year. Boston is a nice ride from

NY in June. We, as patients must become our own advocates and insist on these

tests, whether they be from our own Primary Care Physicians or some specialists.

I save every test result and insist on getting a copy. I make a folder and carry

it with me to every visit to every and any doctor for them to peruse should they

be interested. Most aren't, but are definitely coming around. Remember, they

weren't taught this. To some it is like a voodoo religion. I don't rely on only

one doc. In fact I have lots of specialists to turn to depending on what part

of my body is being attacked the most and which ones would be most fatal. ie:

plumonologist, urologist, cardiologist, etc. Make friends with some of these

people. One never knows when you will

need one. I can't tell you how many handouts I have given to different docs on

the A/P. Some, I'm sure toss them into the garbage. With my miraculous

improvement, now some are asking for literature and just starting to come

around. It's a long hard road and you have to believe in yourself to make it.

Th 1 diseases are diseases that affect the Immune System and causes it to shut

down. Scleroderma, Lupus, Saroidosis are in that category to name a few. I had

one doc tell me I knew more about the disease than she did and should sit for my

Rheumatology boards. She really doesn't know anything, because I've just

started chipping at the Iceberg and have a lot more to learn. BTW, I'm in the

process of compiling stories from patients for a book and need men's stories or

stories about men from their caretakers. As you know we women outnumber men in

this category. If you are interested in getting yours and your husbands story,

I certainly would welcome it. You can choose

anonymity

for personal or professional purposes.

This book is different as it is not written by professionals, but by the

patients themselves and portrays what we go thru. The purpose is to bring about

awareness and to raise money for research. If any money is generated by this

book, it will not go to any pharmaceutical company who is in it for the profit,

but to research laboratories searching for the cause and cure. My husband and I

are volunteers for several organizations. We hope to make these diseases a

household name. Good luck! You are on the right track. If you want to e;mail

me direct, please use my personal E:mail address: martysfolks2004@....

Have a Happy New Year. Dolores & Mike

hssh23 <hssh23@...> wrote:

Thanks Delores & Mike --

I have googled everything and read everything including both Scammell

books. In fact, I feel like I know you somewhat because I have read

your posts and your contributions.

We have family in Boston so hopefully we could see Dr. T.

I will look into T1 diseases. Not sure Dr. T. even tests for

mycoplasmas.

ADB

>

> > Hi,

> >

> > I am writing with regard to my husband. He is 53 years old, and

has

> > always been in very good health; he's a skier, distance runner,

and

> > has alway been physically fit.

> >

> > Two years ago he began having difficulty swallowing... food would

> > just not want to go down (mostly chicken). It was intermittent and

> > he was sent for a barium swallow showing nothing. This went on for

> > two years but it really didn't seem to annoy him because it was

only

> > occasionally it would happen.

> >

> > February 2007 he experienced his first episode of Raynaud's. He's

> > had two since. His hands have been cold since he was a teen;

always

> > red and scaly in the winter, but never the white, tingly

sensation.

> >

> > He had his esophagus widened in August. At the beginning of

December

> > he was experiencing the swallowing problem again and that's when I

> > googled " difficulty swallowing +Raynaud's. " Of course you all know

> > what came up.

> >

> > We notified his gastroenterologist who order some bloodwork.

Negative

> > ANA, anti-scl-70, and anticentromere. He does not have achy

joints,

> > and is not swollen anywhere and still ways 180 pounds as always.

He

> > is still running, has no shortness of breath, and says he feels

the

> > same as he has for years, " feel just great. "

> >

> > He did have a pulmonary function test as part of a physical for an

> > organization for which he volunteers. His FEV1 was 68 and they

were

> > expecting 75. He has had a history of managed asthma (managed

through

> > exercise) and has allergies. His lung capacity was fine, but at

the

> > time we weren't really paying attention to this test overall. When

> > he breathes while sleeping, he takes in a regular breath, but

seems

> > to have a short exhale, and seems to almost stop breathing for a

few

> > seconds and I don't know if that's because of the asthma or

allergies.

> >

> > He saw his GP last week to explain the recent events and a chest

x-

> > ray was ordered (negative). He will have another pulmonary

function

> > test next week which will be more extensive. Also will have kidney

> > function testing.

> >

> > FINALLY... my question. Is this just scleroderma waiting to

explode

> > or has it already started form the inside out? I have Googled

every

> > combination of symptoms and this seems like an odd coincidence of

> > occurances. I'm am generally not an alarmed very easily, and I

know

> > that negative tests can mean nothing, but at this point have

> > confinced my husband that he has or will have this disease.

> >

> > Any ideas would be helpful and thank you.

> >

> >

>

>