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vD0k5E #85653 12/24/99 03:32 PM
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I just have to tell the world that I got the greatest gift for Christmas.

Earlier this year I was diagnosed with a disease called PCOS. It is a genetic disorder that causes all kinds of craziness in women's hormones and other things. Well, after seeing many, many, many (most fairly uneducated in this area) doctors we finally found out why I was gaining approximately 15 pound of weight a month when I was on a diet of 800 to 1400 calories a day with regular exercise. It was due to this disease as my pancreas is flooding my body with insulin. I put on over 200 lbs in 3.5 years and it has been really taking a toll on my health in many areas. It has been quite frightening.

But finally last June, I found a doctor who could diagnose it. He put me on the only meds that have had proven success for treatment of the disease and we have continued to increase the dosage until I am just this month at the highest allowable dosage, but to no avail. It just plain wasn't working.

But . . . this morning I got on the scale (it's been 2 weeks since the last time) and I have lost 24 lbs in two weeks. IT'S WORKING!!!! I suddenly have skinny feet, why that, I don't know, but that's where it showed first. And there are other signs of it working also. Praise God! I am walking around with a really big smile on my face today and thank God for one of the greatest Christmas presents I have ever received. I may just get to see Christmas 2001 after all and maybe by then I will be able to find a Christmas sweater that fits.

Merry Christmas everybody. Hope your's is as blessed as mine.

PS - I am writing a book called "Not Every Doctor was an A Student". I have quite a story to tell and want to educate the world on PCOS (as they feel 10% of woman have it and most don't know it) and I am hopeful that just maybe I can wake up a doctor or two in a number of areas. I will let you all know when the book comes out.

Re: vD0k5E #85654 12/24/99 04:43 PM
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Wow, Karen, I had no idea of the health problems you've had. I am so glad to hear that you are finally seeing some positive results. Please know that you will be in my thoughts and prayers.

Re: vD0k5E #85655 12/24/99 06:09 PM
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I had no idea, Karen. I know this was probably subserviant to some other concerns you had this year with your father passing away.

I checked OnHealth.com and found this reference for PCOS:

onhealth.com/ch1/in-depth/item/item,4717_1_1.asp

The good article also has a link to a pcos support group online:

http://www.pcosupport.org/


I'd be concerned with such a drastic loss in one week. But you and your Doc will know best.

[This message has been edited by JChidester (edited 12-24-99).]

Re: vD0k5E #85656 12/24/99 06:57 PM
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Karen;

Praise God! I will keep you in my prayers that the treatment will continue to work. You really apreciate the holidays when you have to deal with a serious health issue like that. There is a lot to be thankful for.

I went through three years of testing misdiagnosis and dozens of treatment regamines and can understand the frustration you must have dealt with. I have FIbro Myalgia Syndrone, which is a connective tissue dieease related to Cronic Fatigue Syndrone sometimes known as soft tissue arthritis. I was astonished at how many Doctors didn't know what was causing my symptoms. Severe pain, fatigue, memory loss, restless sleep if any at all. Three years of testing and about 10 different doctors and I finally found one that was able to help. I still live with daily pain and fatigue but nothing like the past three years. And best of all I get a little better each week if I stick to the diet, meds etc. I have even had a few pain free days lately.

Keep writing that book. There are many out there that need to hear your story. Those with PCOS who haven't been diagnoses, as well as those with other diseases who need to know that they should not give up.

Glad to hear your Christmas will be such a special one, God bless. And remember Jesus is the reason for the season.

Dale

Re: vD0k5E #85657 12/24/99 07:56 PM
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John,

Thanks for the web site on PCOS. I have about a dozen sites I visit on a regular basis. There was a special program on one of the nightly new special programs about eight months ago. I believe it was 60 minutes or something like that; I don't remember which one. Since then, there has been a lot more research going into PCOS and there is a wealth of information out there. I am a volunteer at the University of Chicago Medical Center where they are hoping to soon isolate the gene that causes the disease. I meet my endrocrinologist on 1/7 to discuss the possibility of my volunteering at Hershey Medical Center where they are doing some great work as well. The site you noted is an from older piece and some of the info is a little outdated (but I had missed it in my studies - glad to see it). For example, they say in the piece that approximately 6% of the premenopausal women are thought have PCOS. The last figures were 10% and it appears that the numbers may even be higher as more an more women are recently getting diagnosed due to the special on television, the support groups and a number of groups putting out a lot of information.

Dale, Praise God is right. And would you like to write a chapter? I have had so many people tell me they want to write a chapter or two. My endocrinologist is even going to critique my book, check it for accuracy and write a chapter or two. He has a great deal of frustration with his colleagues who have chosen not to educate themselves with the symptoms of the disease and thus are out there giving inaccurate diagnosis. Basically, killing off women. My aunt died indirectly from PCOS due to complications when her weight got to 465 lbs. They put her in the hospital for two months on an 800 calorie diet and she gained 28 lbs and she had developed a black moustache and beard which was brought on by the disease that could have competed with Michael's moustache and beard. And they still did not figure it out.

One other area that I want to cover in my book is the disdain with which many doctors treat obese patients. Seems my getting obese had something directly to do with most doctor's inability to hear what I was telling them. And many of the comments I have gotten from doctors have not only been very frustrating, hurtful and counter-productive but absolutely ludicrous. Going from 160 lbs to 378 lbs in 3.5 years gives one some real insight into this. I also plan to touch on the social ramifications of the way obese people are treated by the public. That has been a real eye opener for me.

Can you tell I am on a crusade!!!! It's been a long drawn out battle! And there are some things that are really not right out there!

I think Oprah and I should get along just fine after the AMA gets done with me!!!

I genuinely thank you all your prayers.

Merry Christmas to you all.

Karen (still smiling real big)



[This message has been edited by Michael and Karen Power (edited 12-24-99).]

Re: vD0k5E #85658 12/24/99 08:06 PM
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Congratulations on them finally diagnosing your condition correctly Karen. I would think that it brings at least a sense of comfort if not relief knowing that you really aren't going crazy or crying wolf. Our thoughts and prayers are with you, especially during the holiday season. Merry Christmas to you and Michael.

Rich & Cam

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Re: vD0k5E #85659 12/24/99 09:27 PM
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Thank you Karen for all the info on PCOS. I for one have never heard of the disease. My eyes have been opened, big time.

Just this morning at the breakfast table we were talking about doctors and how they miss so much. One of us at the table is a drug rep and calls on many doctors in the Atlanta area. Some info that was shared recently says that doctors are termed "old" when they are over 40 years old. This is due to the fact that they are not finding what is really wrong with their patients because they are not willing to invest time in research or reading new articles in medical journals and magazines and are comfortable just doing what they have always done. Therefore, they are not able to diagnose and they are prescribing "old" drugs for diseases.

We all are so happy that you are on the road to recovery. Please keep us posted with your continuing progress.

Derith




[This message has been edited by Derith Bennett (edited 12-24-99).]

Re: vD0k5E #85660 12/24/99 11:19 PM
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Oh Karen I am so happy that you have discovered your problem that I have tears in my eyes. You see I also have PCOS!

For years I have told doctors of my problems and they have been ignored until I did research on my own, and went to a specialist. At first they said I did not have it, and then when within one month, my blood sugar shot up to over 350 it was determined I do. I was put on Rezulin almost two years ago and I am a different person. One of the results of PCOS is a high chance of adult onset diabetes. Which is what happened to me. I developed Type 2, but since I have started taking Rezulin and watching my diet, I have not had one blood test that was out of the normal range. That's only one symptom or consquence of the disease. Only one who has it knows what you have gone through. Thank goodness for doctors who are enlightened to it and recognize it as a treatable illness. I hope everything continues to work out for you.

Joanne

Re: vD0k5E #85661 12/25/99 01:06 AM
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What a wonderful Christmas gift, Karen. Doesn't get much better. Hope your trip to the doc in January brings more positive news. Joanne & Dale, glad you have also found doctors that are able to actually help you. Hope you both also continue to improve. Will be sure to keep all of you in our prayers.

Dave

Re: vD0k5E #85662 12/27/99 03:51 PM
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That's just wonderful news, Karen. What a Christmas present! I hope that both you and Dale, and all of our suffering Forum friends find continued relief in the New Year.

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-Art


-Art

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