newly diagnosed

[Guest guest]

hi! I'm sorry but you didn't sign your name. I know how overwhelming it

can be when you are newly diagnosed. In my opinion, I think that your

doctors are a bit mis/underinformed. Unfortunately, I have discovered that

this is a common problem. My first advice is to research. If your doctors

are ill-informed it is better to arm yourself with the pertinent information

so you can demand the treatment that you deserve. Also, I have discovered

that the members of this site are wonderful. They are there to help you -

no matter what the issue. Welcome and hello.

Hugs

in PA

Newly diagnosed

> Hi! Well....I have always had neck pain and popping, low blood

> pressure, headaches, " head rushes " and fatigue. I was told the pain

> and headaches were stress..I figured the fatigue and head rushes were

> normal so I dismissed them. A few years ago I developed asthma,

> allergies, and constant sinus infections (I've had PND for a year

> straight.) This too was dismissed as " such is life " . I had passed

> out a few times for no known reason...after being given a bunch of

> tests, with no conclusive results...I decided the doctor's were

> idiots...and dismissed them too! 27 months ago I developed a pain in

> my left shoulder blade...it has yet to go away. 22 months ago I

> started having pain in my left eye...now it's both eyes whenever I

> look in any direction but forward. I have been being treated for

> Thyroid Cancer since Oct. 2000. This has been the main focus of my

> doctors, and I've just tolerated the pain (which I was told was

> probably due to a pulled muscle that wasn't healing due to the

> cancer.) I was declared cancer free this March. It was at this time

> that I decided to find out why I was in pain. I've seen an

> orthopaedic surgeon...and had an MRI. I have a Chiari 1 with 5mm

> herniation...I also have degenerative disk disease in my C4-5, C5-6.

> He classified them both as " mild " and " not a real concern. " He also

> didn't feel they were the cause of my symptoms. He said his sister

> has Chiari...and she's fine. Tonight, I saw an ophthomologist about

> my eye pain...he says my eyes are fine...his son has Chiari..his son

> is fine...and he doesn't believe Chiari is the cause of my symptoms.

> I have horrible insurance (I could no longer afford good insurance

> after paying off the cancer bills)...and the only Neuro surgeon I can

> see is Dr. Feely (head of Neuro surgery at Hospital, Camden,

> NJ)...Dr. Feely is extremely busy, and cannot even consult with me

> untill Sept. 20th. I saw a chiropractor for 9 months, I've done

> streching exercises daily, I've had trigger point injections, and

> epidural cortisone injections...all with no result...All of my

> symptoms are tolerable (although I've had such bad headaches

> recently, that I considered going to the hospital.)...however, even

> the tolerable becomes intolerable after a while. From everything I've

> read, I believe I am classic Chiari. Are my doctors

> just " underinformed " on the condition? What do I do now? I'm sorry

> if this post is overwhelming...I am a mother of three, a college

> student, I have 5 animals....and a husband who works out of town and

> is only home 1 night and 1 day a week...I feel overwhelmed...any help

> would be greatly appreciated. Thanks...

>

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

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>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group: http://groups.yahoo.com/group/chiari/

>

>

>

[Guest guest]

Hi everyone. I am 27 years old and I was just diagnosed with PSC a week ago. I did not have any symptoms of PSC, but my liver function tests were coming back abnormal for about a year before I started turning yellow & finally I had an ERCP which showed that I have PSC. I have not yet met with my doctor (other than when I was under the influence of pain medication), to learn what this disease means for my life. After doing some of my own research, I am coming to the realization that this disease is very life altering. I would just like to hear from you all about your experiences with this disease so that i can get an idea about what I am facing. I have a 1 year old daughter and am very scared that I won't be healthy enough to see her grow up. I am not sure exactly how this group works, but you can email me personally at sindyjay@.... THanks, Sindy

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[Guest guest]

Sindy,

I am sorry to hear you were diagnosed with

PSC, but happy you found us. You will soon find out that PSC is different for

everyone. There are people here who have had PSC for a long time and are mostly

symptom free. There also are people that go from diagnose to transplant in a

couple of years. I was diagnosed the same way as you were by abnormal liver

function tests. Even after diagnose by ERCP I was symptom free for a couple of

years. When I developed mild symptoms my gallbladder was removed and I had a

stent placed and removed with ERCP procedures. Since then I have been symptom

free again and even my liver function tests are back to (kind of) normal. I am

currently taking high dose ursodeoxycholic acid (UDCA) and vitamins A, D, E and

K. PSC might seem like a devastating diagnosis, but it works different in

different people. Try to find a medical team that has experience with PSC and

get informed, make sure that the medical team works WITH you instead of on you.

Learn about PSC and ask questions here. There are a whole bunch of

knowledgeable and experienced people here that will be happy to guide you.

Chaim Boermeester, Israel

From:

[mailto: ] On

Behalf Of Sindy Hansen

Sent: Wednesday, March 14, 2007

3:45 AM

To:

Subject: newly

diagnosed

Hi everyone. I am 27 years old and I was just diagnosed with PSC a week

ago. I did not have any symptoms of PSC, but my liver function tests were

coming back abnormal for about a year before I started turning yellow &

finally I had an ERCP which showed that I have PSC. I have not yet met with my

doctor (other than when I was under the influence of pain medication), to learn

what this disease means for my life. After doing some of my own research, I am

coming to the realization that this disease is very life altering. I would just

like to hear from you all about your experiences with this disease so that i

can get an idea about what I am facing. I have a 1 year old daughter and am

very scared that I won't be healthy enough to see her grow up. I am not

sure exactly how this group works, but you can email me personally at sindyjay (AT) yahoo (DOT) com. THanks,

Sindy

Looking for earth-friendly autos?

Browse

Top Cars by " Green Rating " at Yahoo! Autos' Green Center.

[Guest guest]

Sindy-Welcome to the group-sorry for the circumstances of which you came. Many of the members on this group have lived years without symptoms, others, not so long. Some have had transplants, others are well managed without needing one, and others are listed and waiting, or going through the listing process.

Do not look at PSC as a life sentence, but rather a way to learn and manage. My brother was diagnosed in 2001, he is currently getting ready for the transplant evaluation testing here in just a couple weeks.

This group is an amazing source of support, answers, questions, and even venting. Please do not hesitate to ask questions, and voice concerns. There is almost always someone that has gone through, is going through and understands your situation.

Good luck and welcome.-Brother, , 30, UC & PSC

[Guest guest]

>Hi Sindy,

I echo everyone else who has said that sorry you are here, but

glad you found this site. I was diagnosed in 2004 after elevated liver

tests, like you. I too have a young son, he is 4. I share the same

concerns as you. Remember that this disease is different for everyone.

Find yourself a knowledgeable doctor, preferably a Hepatologist and

educate yourself on the illness. This site has so many caring people

who are a great source of information as well. If you want, you can e-

mail me with any questions you may have at cjnzach@....

43, dx in 2004,living with my

wonderful husband and son in Powder Springs, Ga.

[Guest guest]

Dittoes to what everyone else has said so far. PSC is a cruel, petty

disease that affects everyone differently. It can be messy at times,

particularly if there are any other gi symptoms. At the same time,

many people go years with nothing more than elevated blood enzymes.

As for me, once I got through years of self pity, I finally decided

that I wasn't going to let this control me. I stopped blaming every

little ache and pain on PSC, and I got off my butt and started

exercising, eating better, and trying to keep a good attitude. I'm

now nearly a decade into this. I still work a full time job in my own

business (even more now...I'm a tax guy). And even though things are

now progressing to a point where I'm going through the transplant

review process, I'm keeping the faith. I do get tired, my crohns does

flare up, and now there is a suspicious shadow on the latest mrcp, but

as long as I keep fighting, I know I'll be ok.

PSC will beat you if you let it. Eventually it does catch up with us,

but in the meantime, as tough as it may be, don't let it get to you.

It may take years for you to get to that point...it doesn't mean you

shouldn't try, however.

Get educated.