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Steve and Kim's Website

feeds@yuku.com (CarolRae) — Sun, 18 Oct 2009 13:07:00 GMT

Hi Everyone, If you have been following Steve from Wisconsin's story and would like to help brighten their spirits, please go to caringbridge.org and type in stevesargent. There is a section where you can go into his guestbook and give him your support with a note. Also, look at the pictures, and you will see some photos of our family. I think it is nice when you can put a face to the names you are reading about. I continue to uplift ALL of you. Right now I am especially remembering...

To Yvonne

feeds@yuku.com (CarolRae) — Mon, 12 Oct 2009 09:15:14 GMT

Hi Vonnie, Thanks for writing me. I couldn't figure out how to write you back so I'm hoping you get this. We had bad news about Steve last week, as his paras have moved into the bone. He started chemo (CVD) on the spot and had a treatment Wednesday and Thursday. He goes back in three weeks. Now we are working on raising the money for him to go to Switzerland for Y90. Several of Kim and Steve's friends and some of our friends have offered to do fundraisers for him. There will be a...

Negative biochemical results but all pheo symptoms positive MIBG

feeds@yuku.com (Charlotte) — Sun, 11 Oct 2009 22:30:31 GMT

Hi to all of you and the wealth of information you have on pheos. I would like to be in touch with anyone who can relate to the quandry that I, and my specialists, are in; negative urine results, equivocal MIBG( ie showing one adrenal gland much brighter than the other), negative CT scan for adrenal neoplasm, 3x epinephrine plasma level, and all symptoms of pheo; most of which are under control with 2 BP meds, 1 migraine/headache med. I also have been taking for many years, lamictan and...

Waiting on diagnosis

feeds@yuku.com (jana125) — Fri, 14 Aug 2009 14:38:45 GMT

Hi everyone.I first want to say this site has helped me alot with all the information needed to more understand this condition.Its nice to have a site to go to and read other peoples storys that relate with yours.Its comforting to know theirs people out there feeling exactly what you are feeling.You feel so bad it makes you feel like your the only one going through it.Heres my story and I'll try to keep it as short as possible.I'm 30 years old and since I was 18 I've...

metastatic pheo SDHB

feeds@yuku.com (jegher) — Wed, 04 Feb 2009 11:47:09 GMT

Hi I am Tom from Switzerland,one of thous rare guys with metastatic pheos(SDHB).I am following for quite some time this intersting
postigs,so I thought you might be interested in my story.It all started in summer 2004 when I felt something hard below my left rib.My sister,
who is my family physician told me that it could be something harmless with my colon,but to be sure I should go to a ultra sonic.Optimistic as I am I thought it would be nothing to worry about and I went to...

men2b and pheo

feeds@yuku.com (angelfish) — Sun, 30 Nov 2008 12:22:16 GMT

I have found this site by accident while researching about pheos. my son jake has NID and MEN2b which inturn have there own list of symptoms and problems. the short story is his 24hr urine test came back with some elevated levels and we are waiting for our app for an mibg scan. Does anyone out there have men2b or children with it. And can you give me any info on pheos. If they are found I assume they need to be removed. Does the adrenal gland go too or just the tumor? How long is the surgery...

New guy, mink52, has questions.

feeds@yuku.com (mink52) — Wed, 22 Oct 2008 11:45:30 GMT

I have just come aware of a diagnosis that brings me here for information. I would like to find the average annual growth rate for these pheocromocytoma tumors. The volume of their discharge per centimeter too. Thanks, keith

New to this board, yet already family!

feeds@yuku.com (LovingLife) — Sat, 20 Sep 2008 21:47:23 GMT

I have been contemplating the best way to introduce myself. I have been following this board since January, reading, learning, soaking in all of the knowledgable information available from all of the wonderful people on this board. Over the months, I have come to know some of you, and look forward to reading your posts. My story is a familiar one, and seems to echo those of so many others on this board. I am a 41 year old first time Grandmother, active, healthy, young at heart. The...

Link b/t Yaz/Yasmin and Pheos?

feeds@yuku.com (JILLRM) — Thu, 18 Sep 2008 19:00:22 GMT

Any other pheo patients who took either Yaz or Yasmin at any time? Pheos were caused in +%++#! studies (rats) during clinical trials. My daughter was diagnosed with a pheo a few years after taking one of these drugs. We are just interested to find out if there is a connection in humans....

Pheos and kidney disease

feeds@yuku.com (LRG) — Sat, 23 Aug 2008 12:45:16 GMT

My husband has neurofibromatosis and developed a pheo on right adrenal, about 10 years ago. Despite doctors' assurance that the pheo was "too small to cause problems," he became critically ill and had a laproscopic adrenalectomy of the one adrenal gland. Since then, he has gone into renal failure (perhaps unconnected. He had kidney problems as a kid). He is scheduled for a kidney transplant with my daughter as the donor, next week. He just got a call from one of his...

**Edit

feeds@yuku.com (BeautifulDreamer) — Mon, 04 Aug 2008 17:51:03 GMT

*Moved

SDHB+ mutation and medic alert bracelet?

feeds@yuku.com (Unregistered(d)) — Wed, 14 May 2008 16:54:43 GMT

Hi there,

I have recently been found to be SDHB+ and after loads of scanning, found to have a possible pheo (to be confirmed with more scanning).

My question is: does anyone in my similar position wear a medic alert bracelet for the risk of elevated catecholomines, pheos, adrenal issues -- given what I understand to be concerns with anesthesia?

I travel frequently for work and am wondering if I should get a bracelet -- and if so what it might say.

thank you,...

my 14 year daughter has a pheochromocytoma-need info

feeds@yuku.com (helmaghri083073) — Mon, 14 Apr 2008 20:08:25 GMT

I have a 14 year old daughter named sarah. 9 days ago she was diagnosis of a pheochromocytoma. She did a urine test that was an 11.5 when the range was2.7 to 6.7. We have a ct scan tomorrow. She had all the symptoms and I mean all except she has very low blood pressure not high. I spoke with a doctor friend who said she cant have one because she did not have the high blood pressure. How reliable are the 24 hour urine tests? I am scared and feel overwhelmed! I have lots of questions and it...

Like AIDS & Cancer, PHEO hits every speciality.

feeds@yuku.com (Unregistered(d)) — Tue, 08 Apr 2008 10:13:51 GMT

You call this "treatment"? My God!! No doctor takes responsibility for the care of a pheo patient; we go from one specialist to another, and they don't want us.

This is torture.

Actual HEALING treatment consists of doing and showing what makes people feel better, look better, respond better, maintain and improve health.

What I need to cope with this is access to oxygen and antibiotics for occasional opportunistic infections. These I am refused; however, tests,...

men-2a questions?

feeds@yuku.com (Unregistered(d)) — Fri, 04 Apr 2008 12:46:40 GMT

Are there any boards that deal with men I can't seem to find them?I cam across this board from the pheo and men site but find no postings for men.Help!!
Thanks Peg

trremors

feeds@yuku.com (jam43) — Wed, 26 Dec 2007 20:09:56 GMT

Hi..I am having difficulty with mild tremors. Although my Doctor said they are not related to Pheo's I have seen many articles relating the two..anyone else have this problem and or solution? Thanks jam43

Screen Going White

feeds@yuku.com (arzauven) — Wed, 12 Dec 2007 12:23:57 GMT

Can anyone tell me why the screen goes white sometimes when I click the "Add Post" button? I find myself logged out afterwards.

Please may I come in?

feeds@yuku.com (ennyow) — Wed, 17 Oct 2007 08:24:47 GMT

Hello,

I have just found this board after some very kind hearted folk on the Cushing's Help boards pointed me here.
I have been undergoing rigorous testing for he past twelve months initially for Cushing's then Addison's then Cushing's again and I am finally told that all test results are negative.
There are several symptoms however that have led me here which are.......high BP/ pulse increasing rapidly with any sort of physical exertion, tinnitus, pins & heedles...

Forum Updates Q & A

feeds@yuku.com (MaryPeebels) — Thu, 26 Jul 2007 10:43:00 GMT

Several persons have inquired as to why some forums will often show new posts, yet when they look there are no new posts. This can happen for several reasons:

1) Ezboard only allows 20 pages per forum, so we have to keep Page 20 threads moved to archives or ezboard will delete the topics permanently. We not only move these posts to archives, but sometimes to other appropriate forums as well. When we do this, ezboard lists the date as if the forums have new posts since their programming...

Hello!

feeds@yuku.com (lovenhugsx4) — Sun, 11 Feb 2007 22:29:31 GMT

Hello to everyone. I am new here, although I am not 100% sure that I am supposed to be yet, so I hope nobody minds. I have spend the last few years with 'strange symptoms', that have been attributed to stress, weight and life in general. My BP is all over the place, headaches, fatigue, upper abdominal and flank pain, tingling in hands/feet/face, blurred/wavy vision. I finally switched doctors and this new one ran a 24 hour urine which came back elevated, so he did a CT which came back normal....