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Interesting article I just read on Yahoo news under the health section. Discusses the connection of VHL with the famous Mc Coy family and explains about vhl. Click on Yahoo news and go to the health section. It is the third or fourth article mentioned in this category.
Heart disease Hypertension Hysterectomy Atrial fibrillation Heart attack Stroke Pheochromocytoma Diabetes Stress
I have just recently read about this condition and spoke with Dr. Stolle at University of Penn. . She suggested I try to see if anyone in my Mccoy lineage has already been through the Genetic testing and if so, could they share their results with me. I am a direct descendant of Sel Kirk McCoy and all of my aunts, uncles, me, several cousins, my father and nephew have either type 1 or type2 diabetes. According to Dr. Stolle there is no direct link with diabetes, but it does effect the function of the pancreas. My father died at age 56. He had a tumor that was removed on his spine, was diabetic, and died of a heart attack as a result of heart disease from the diabetes. I have tumors on my arms and one on my forehead. I have also had cysts on my ovaries and tubes. If anyone can assist in possibly helping with any info on their test results, I would greatly appreciate it.
I saw that same article. Howdy cuz, :/ sorry to have to meet you under such crappy circumstances. I have the same kind of family medical history and just today I found out the cousin that I look so much like that he used to switch classes with me in high school just died of a brain tumor.
I took the information to my doctor and though she was not really interested in doing any testing at first, due to the rarity of the disease, but I reminded her of my family's history of diabetes having it's way with the women in my family, how most of my family had hypertension, that my mother and sister had just died from complication caused by Atrial Fibrillation and that my brother had a stroke in his 20s. Then there was the fact that I'd just been newly diagnosed with Atrial Fibrillation.
When that didn't convince her and she had decided to not look any further in the direction of internet panic, I Got kind of cheesed off. Needless to say The tumors kicked in and lit the furnace of furry. I've been working on handling my anger so I was able to keep myself in check when she walked past me outside the room the first time, but when she was ready to do it again I asked her. "If I don't have those very rare tumors on my adrenal glands then you explain to me why I'm hot flashing 3 years after a complete hysterectomy?"
She started with the 24 hour urine test. Mine showed elevated keratin levels, so she sent me for an ultrasound on my kidneys to look for the tumors I suspected. The test showed a 1.79 cm mass on my right side. I've had a blood test and am waiting on the results and the office to make me an appointment for a CT Scan.
All you can do is take it one test at a time cuz.
good luck.
Be sure to see our reply to the article as well. See www.vhl.org/press and look for the McCoy article (it's about the fourth one down). There's a reply from me, and lots of additional information there.
Best wishes,
Joyce
Will do Joyce thanks for the info.
*snip from Joyce's responce*
While the article associated VHL with "rage" as a factor in the Hatfield-McCoy feud, VHL is NOT a rage-causing condition. It is important for everyone to understand that a sudden change in behavior, or any unprovoked outbursts, might in fact be a symptom of an underlying medical issue. Many medical conditions on their own can cause sudden changes in behavior -- blood pressure, diabetes, brain tumor, stress and pheochromocytoma ("pheo") -- are just a few examples. Families who know they may be at risk for a pheo, should pay special attention. But it is also important to understand that rage is not the usual reaction to this type of tumor.
*/snip*
I agree whole heartedly with you on this.
I have anger and rage issues myself, really big ones! But that's because of how I was raised not any disease. I will say the adrenalin rushes in the middle of the rages where a lot to handle but with therapy I have managed to stay in control and out of jail.
This is about choice and taking personal responsibility for your own actions. Without on going therapy I'm not sure I would have cared to stop myself from lashing out, but again that has more to do with how I was raised than how much adrenalin was running through me.
I won't say I haven't had the cops called on me a few times. I just learned early that if I wanted to break something it better be mine. The front finder of my car had to be pounded back out when the security guards escorted me off the property at a hospital one night, but it was MY car. Even the police don't care if you pound the crap out of your own car, they'll even laugh with ya when ya tell 'em ya feel better though.
In the article (and in the original quote from the doctor at Vanderbilt) several terms were confused. It is important to sort them out.
VHL does not cause rage. This is an important point, especially for the 87% of people with VHL who do not get pheos at all. They were feeling unjustly described as subject to uncontrolled outbursts of rage.
VHL can sometimes lead to a tumore called a pheochromocytoma. Only about 13% of people with VHL ever get a pheo. In some families, pheos are more prevalent than in others.
Pheochromocytomas do not "cause" rage. Pheos can cause surges of adrenaline and metanephrines. These hormones can jag your cardiovascular system and cause feelings that can be interpreted as panic attacks, or anger -- or sometimes rage.
Understanding what is happening to you can go a long way to helping you control your reaction to these feelings. As you say, the way we were brought up also influences how we will react when these feelings hit, and therapy can help with techniques for handling those feelings. But ultimately, the source of the hormone surge is the pheos. Once that pheo is removed, and the hormone levels are normalized, the surges go away.
But life can also cause surges of feels which have to be dealt with. As you so rightly say, it's still all about choice and personal responsibility. I'm glad you are working to maintain control.
Best wishes,
Joyce
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