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Here are entries from June 1999 to December 1999:

How I found your page: Guess ;)
Comments about the web site: Run auto-test

How I found your page: Member
Comments about the web site: Welcome to our third Message Board page.

How I found your page: From a search engine
Comments about the web site: Hi

How I found your page: Member
Comments about the web site: G'day everyone, It has been a while since I wrote to anyone in the support group. At present I feel fine, and have fully recovered from minor stroke (TIA) which I believe occured from a decrease in medication. I have an appointment with the hospital where they will perform a Vena Cave saline infusion ( please explain) this requires me to stay overnight. They want to check both adrenal glands.And hopefully remove the right adrenal where the tumour is located, this will be done the laparoscopic way. The Prof. now feels I have PRIMARY HYPERALDOSTRONE I am fed up with this waiting game as we had a trip planned to go to Holland ( place of birth)but I suppose my health is more important! I am now also under the care of a neurologist to check the head. I personally believe that is all in perfect order. I am very excited at present as my eldest daughter has gone into labour with her first baby, our fourth grandchild. I wish everybody strength and good health, be positive and optimistic. Take care Femme from downunder.

How I found your page: From a search engine
Comments about the web site: I have signs and symptoms of PCC but the MIBG was negative. I am still having the uncontrolled hypertension serious sweating, enlarged left ventricle, hypotension(orthastatic) Can you put me in contact with Medical persons with expertise in the diagnosis and treatment of PCC. I wonder about paraganglioma ???

How I found your page: From a search engine
Comments about the web site: My wife most probably suffers from Pheochromocytoma, because doctors could not find any heart problem. Her blood-pressure suddenly rises to a danger level. Doctors do not call this symptom as anxiety disorder. She takes Xanax and other beta blockers, and so on.

How I found your page: Member
Comments about the web site: Transferred from original message sent Fri Jun 18 1999 14:30 by junebug

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Comments about the web site: Transferred from original message sent Sun Jun 20 1999 18:12 by 2 Jeanne

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Comments about the web site: Hi everyone. I've finally moved. I'm in my home that's been in the family for 4 generations now. I'm getting settled in, checking in with my new doctors, and such.
Because of the fact that I had to change some servers with my transfer of handling this board, we've had some overlapping messages. I'll try to see that everything is fixed soon, and I'll answer messages and email as soon as possible. It is good to be back and hearing from all of you! Sincerely, Mary (Main Webmaster)

How I found your page: Member
Comments about the web site: OK. Me again. I'm still trying to get this all organized, and it would help if I were an organized type of person in the first place!
If any are trying to get back to the main Internet Message Board Index, here is the link:
Internet Message Board Index

How I found your page: Member
Comments about the web site: And here is the link for the old messages with Archives of Internet Message Board posts:
Internet Message Board Archives

How I found your page: Member
Comments about the web site: Glad to see you here finally Mary,,, we missed you!!! Love, Rose

How I found your page: From a search engine
Comments about the web site: Mary, I am glad you are back, hope you are well. I have a question re: men IIa and vision problems. I have difficulty seeing distances, no real problems. However, when I do have an eye exam for new glasses (which I only wear for driving). I would like to be knowledgeable about the effect men IIa has on sight. Please educate me. Also, I had a successful adrenalectomy June 7th. Following the surgery I had hard palpitations at home. Not at the hospital, I was d/c the llth of July. Also had headaches. I saw a 'quack' endocrinologist who started talking about metastatic pheo., etc.... alarmed me naturally, blood pressure was l40/90, an hour later, at another m.d's office it was l20/88 - it has been normal since. Anyway, to cut to the chase.....I had experienced palpitations and headaches as a part of the premenstrual scene. The week I experienced the symptoms above, I had the same, I had forgotton what 'time' it was relative to the physiological calendar. Since 'that' week, I have had 0 palpitations and only allergy related headaches. My blood pressure was ll4/70 2 days ago and I have actually begun to feel better than I have in a heck of a long time. Any similar experiences going on out there? Oh yes, and Mary, I get a pentagastrin test in July for the medullary thyroid ca. sorry I am so very wordy.... Love to everyone NB

How I found your page: From a search engine
Comments about the web site: Hi to Mary Peebles, good to see you are back and that four-generation house sounds wonderful! I am hoping that you or anyone with similar experience with pheo can give me some information or advise. I went for exision of recurrent pheo on June 8th. It turned out to be several small ones, one at the site of removal of the first pheo and the others lined up on my aorta and unable to be reached through that abdominal incision. So now I have a few months to recover, then thoracic surgery is planned to remove the remaining pheos from my aorta. Can anyone tell my what to expect and watch out for? (I had a pulmonary embolism with this last surgery and was in the hospital 12 days and am now on coumadin.) The endocrinologist says I do not have a familial disorder like MEN, but is this now considered malignant or metistatic? What do I have to look forward to with these removed? Do you know anything about MIBG therapy (as mentioned in Vinnie's letter to Robin? Or where can I get more info about this or any other treatment? Thanks to you all for being here and for caring so much about all of us. God Bless. Sincerely, Ann Jones

How I found your page: Member
Comments about the web site: Hi Everyone. I really like this new board. Great job. I had a CAT Scan today, Sunday, which was supposed to be an abdominal CT in search of a pheo. This is the only diagnostic tool that my doctors will agree to do because I am on alot of medications that they refuse to withdraw me from. Well 2 images, and 10 minutes, later, I was sent on my way home. I am so confused, depressed, scared and lost. I don't know what to push this HMO for. We need advocates in high places. I know my well meaning and loving husband is bound to get nasty. Help!

How I found your page: Member
Comments about the web site: to give an update on our son's Octreotide treatments at Cross Cancer in Edmonton,Alberta: His third treatment is over, the tumors in "the gut" area are now gone, with the exception of one that is "physically smaller". The tumors in his lungs are still totally gone (this after the first treatment). Back home in the state, his Endocrinologists has now taken him off his Tenex, as blood pressure is around 100/75!!! It just gets better and better. We thank you all for your support and prayers. The hospital there is amazing, and after 17 years of waiting for the healing, we are "cautiously optimistic" that another missing link is fitting.He feels great and blood counts remain normal,so not even having any negative side effects. Anyone who wants info on this please contact me at caseber@aol.com. Hope everyone is fine..glad to have Mary back in print!

How I found your page: Member
Comments about the web site: Hello everyone, WELCOME BACK TO MARY!!! Missed you a lot my dear friend. I like the new format for the message board. Things have been extremely hectic in my household for the past month, and am glad that we are going to settle down for a little bit. Our son Ryan graduated from High School Friday night (6/25) and we had a huge party on Saturday...my entire family was here including our "son" from Germany, who surprised us on Friday night. It was a lot of fun, but a lot of work, and it will take me a while to recover. My blood pressure was up pretty much the whole weekend with a round of episodes on Friday night and early saturday morning. Stress plays a major role with me and this illness. Also, I am now completely off Atenolol. I am now taking 360 mg of Verapamil (Calan). I only take the Atenolol if the palpitations become severe. We will see how this works. My doctor at NIH is in Europe for a couple of weeks, but emailed me that my metanephrines were normal on the last urine I sent down there, the rest of the results are pending...that would be the normetanephrines, and catecholamines. I have decided to wait until early September to go back down to Bethesda, as my summer is fairly busy with doctor appointments, testing, college orientation (Ryan), and finally getting two sons ready to go to college in August. I will only wait until September if we can keep my blood pressure stabilized. By the way....my endocrinologist is setting up an appointment with a Neuropsychologist for me. We decided that I need to have this important evaluation to measure my abilities at this point. I have had severe memory and cognitive problems, and a neurophsycholigist will be able to better evaluate this part of my condition and make the necessary recommendations. Anyone else out there who has had this type of evaluation?? Well my dear friends, that is all for the moment. Please feel free to email me with any questions or if you just need to talk to someone. Take care and may God Bless you. Love, Debra

How I found your page: Member
Comments about the web site: Hi everybody, been trying to get on chat line but can not work out the time difference between the USA & Australia. Please someone give me the correct time difference if you are on at 5pm. Thanks, Femme

How I found your page: From a search engine
Comments about the web site: Hi all, I like the new message board Mary! Wow, a house of four generations! Glad you all sound strong. I'm waiting (boring)for blood pressure control to be set up by my hosppital and am being dished out the same line as previously (i.e. fobbing me off because they cannot find me a bed). Other than that I wait and put up with the chest pains that have been getting much worse recently. Arms and legs hurt a lot. Still, patience is a virtue I'm trying hard to cultivate. Big hugs to you all Love april

How I found your page: From a search engine
Comments about the web site: I'm a 34 yr old femal and I have had the "classical" pheo symptoms for over a year now and finally a physician has been able to identify the probably cause as pheochromocytoma. I have gone through the preliminary blood and urine workup's, and the results came back positive for the pheo. As soon as I found out the positive results, I immediately searched the net for more info about the disease and where to go from here. I'm scheduled for my MRI on 7/1 and am anxious on one hand to finally get this identified and resolved, and on the other hand I'm anxious because I fear they won't find the tumors. I'm wondering if any of you have heard or experienced a "positive" on labs, then a "negative" on the scans? If so - what were the next steps? From my research, I thought excessively elevated catecholamines was a near-sure identifier of pheo. Any insights, guidance or support is greatly appreciated! Seeing this site and others has made me feel not so alone with this situation ... God bless all of you for your strength and support!

How I found your page: Member
Comments about the web site: Responding to NBButler's message: Hi Nancy. I have MEN2A, and I have had vision problems all of my life. I am sorry to say that the research is not there to give you an answer to this important question. At age 29, I began to have small strokes and go blind for unknown reasons. These last for months at a time. I also have multiple optic nerves and blood vessels in one eye, along with amblyopia. The stroke caused me to have multiple blind spots which haven't shrunk yet to the point where I can see as well as I would like. I and another person with MEN2A have odd disks in our vitreous humor of our eyeballs, and the top doctors in the world do not know what these disks are. The vision issue is one that I am pushing, because there are others in our group who have rare vision abnormalities. I personally think there is a connection to MEN2A or to Pheochromocytoma, and I am trying to coax researchers into doing more about this subject.
I am happy to hear that you had a successful adrenalectomy recently. I suppose with your body's cyclic functions there were some adjustments for the changes. It sounds as if you are doing much much better.
About a decade ago, I had the Pentagastrin Test, and while I can say that it was no bed of roses experience for me, and I survived. It did not "make my day". It stimulated my body into an episode, but I want to say that I did have an extremely high Calciton level to begin with (over 4000 and off the record). After that, I only have Calcitonin assays and blood and urine panels for my main MTC tests, but I think the Pentagastrin allows them to evaluate how likely one is to have the MTC. Contact any of us if you have questions or concerns. I can probably answer most queries about MEN illnesses, because of my family's history with more than one type.

How I found your page: Member
Comments about the web site: Thanks to everyone for the wonderful welcome back messages! It is good to be back with my "online family". There have been questions about the chatrooms and such over the past two weeks, and I am going to try to answer these as soon as possible. I will be able to do AOL chats on Sunday evening soon, and I plan to do an Internet chat on Tuesday evening. I will be posting the times and links on this Message Board.
We have several new members, if you all would care to browse the members web pages. I make free websites for all who want them. It is as simple as saying that you want one, and letting me know.
There have also been questions about how to become a member. All you have to do is say that you want to be a member, or post to this board. All who have posted to these boards automatically become members. We do like for you to let us know if you want a website, and whether or not you want your email available for others to see.
We are an easy group. All is volunteer, and there is no cost for anything. That is the way we want it. Sincerely, Mary

How I found your page: From a search engine
Comments about the web site: HELP!!! HOW DO I GET TO THE CHAT????

How I found your page: Member
Comments about the web site: Oh my gosh!!! Other folks like me!!(G) I have had met pheos for the past 10 years. I have had mets to both adrenals, spine, lung, aorta, pancreas, and brain and bones. I have had 50 radiation treatments and 8 operations. In reference to a note I read earlier I have had visual disturbances and/or problems for several years, which I understand is a sumptom of elevated catecholamines. Anyway, great to find you guys. BTW, I'm 39 years old and live in GA with my husband and two children 17 and 13.

How I found your page: Member
Comments about the web site: Hi Everyone, I am in the middle of a major HMO war. I tested positive for pheo from a 24 hour urine. I know that the test is not totally reliable and was only a start. This caused great chaos in the HMO. What to do and with whom to do it?!?! Well, they decided to send me to the head of Endocrinology in their Boston center. Trustworthy? Not. He explained away my symptoms and positive test with the fact that I am overweight. He did order a CAT scan of my adrenals to shut me up. He stated that no other "fancy" tests need be done and that they really didn't want to find anything else that they would have to deal with! He called with results saying the CT was normal and that was all that they would do... Two days later my primary called explaining that the note she received, from the same doctor, said that there probably was a very small pheo present. Where do I go now? I am having trouble trusting any doctor and my symptoms are flaring. Does anyone know if limb pain and swelling to the point where it is a pitting edema has any connection with pheo? I can't get any straight answers anymore and I trust in the collective knowledge of those involved in this support group a whole lot more. Thanks for your time. I hope that your relationships with your doctors prove to be more beneficial.

How I found your page: Member
Comments about the web site: Thanks to many of you who responded to my email this past week - your interest and support is so greatly appreciated, and it helps tremendously to know that I'm not going this route alone. For those who inquired, I had my MRI done yesterday, and was on the table for over 2-1/2 hours. I'm not sure if I should take that length of time as a good or bad sign ... but each time they appeared to be finished, they repositioned me and took another series (3 additional series total). My "gut" tells me that they found what they were looking for, but on the other hand maybe they didn't and were re-evaluating to be sure. Would anyone by chance have an opinion on which way this may go? I don't have any results yet and they indicated that it may take a week or so (especially with the holiday week/weekend). So once again, I'm on pins and needles, but just glad we're on the road to identifying my problem. Thanks again to all of you - have a great holiday weekend and I look forward to talking with many of you in the chat rooms one of these nights ... Claire :-)

How I found your page: Member
Comments about the web site: I still have'nt gotten a diagnoses on this I know in my gut that pheo is wha i have. does anyone know if it is possible to have this for 10 years. and have perodic episodes and now the episodes seem to come every day and wax and wane. i use to be able to get better in between but i cant seem to this time, ever since my two trips to the hospital with chest pain things seem to have gotten so much worse, i hate to complaine any input would be appreciated. thank-you les

How I found your page: From a search engine
Comments about the web site: My sister has just been tentatively diagnosed with Pheochromcytoma. In doing the research on it, I found your site. I wonder if you are aware of the supplements, Ambrotose, Phyt-aloe and plus, from Mannatech. For the immune mediated parts of your problems. If it is OK, a website for cross reference is following. If you have interest in further information, please let me know. Thank you, drlynda (Lynda A. Clark, DVM, ND) http://www.mannapages.com/drlynda

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Comments about the web site: Hi everyone, I seem to have a problem getting into the chat room, it keeps telling me there is an error in Java. Please explain and also the time you are on( my time, Australia) Take care all, Femme

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Comments about the web site: Hi to everyone! First of all, I want to apologize to Femme and others who are having difficulties with the chatrooms and getting into them. It is my fault. I'm kind of embarassed, because I cannot get into my own chatrooms that I made. I am used to living in the city, where so much internet access is available, and now I am living in a small town, with limited access. I am working on the locals here, to get better access for our area, and in turn I can get our system chats up and running better again. I will figure out a way, once I scratch my noggin and get some bright idea. (This does still happen to me once in a while.) Hope you are all doing all right. Please post to the message board in the meantime, because it is becoming quite successful, and I'm getting lots of positive input about it.
Kindest regards to all, Mary Peebels

How I found your page: A friend told me
Comments about the web site: I am so grateful to find this site. Sad too that others have to have this awful thing, pheo! I have recently been diagnosed and am currently going through the hoops to confirm. (?) No family history, that I know of. Hope I can be of help, comfort to others.

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Comments about the web site: Hi, I wanted everyone in on some good news. Last Oct. I had a pheo removed from my left adrenal gland. My doctor wants to do a 24 hour urine test every 6 months on me and I just had my first one done and it came back fine. We are all relieved. Thanks, Darla

How I found your page: A friend told me
Comments about the web site: Has anyone been on Alpha blockers? Would like to hear responses re: how these medications helped, hindered, etc., expecially how you felt personally while on the Rx. I have been on Dibenzyline for a few weeks. Thanks, C.

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Comments about the web site: Darla, I am so glad to hear your good news about your successful surgery and test results!
More good news: I am living very close to your town now. Hi neighbor!

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Comments about the web site: Hi Cathy. I am on an Alpha Blocker called Hytrin. I had trouble when I first started it, because it made me nearly pass out. I named it "IT", and kidded my family to look out, because I was getting ready to take IT. Now, it helps my blood pressure, and creates a good alpha blockade for my particular health needs. I have adjusted to it just fine. Here is an interesting link about ALPHA BLOCKERS Hope this information helps.

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Comments about the web site: ALPHA BLOCKERS INFORMATION

How I found your page: From a search engine
Comments about the web site: What is the percentage of Pheochromocytoma reoccurring?Is it rare?

How I found your page: From a search engine
Comments about the web site: HELP! I had to stop taking all meds so that I can do the 48 hour urine collection on 7/17-7/18. My anxiety level is very high and I feel terrible. HOW CAN I GET THROUGH THIS?? And, UGH, I read thru the new posts and saw the words "urine tests evey 6 months." Do this again??!! I'm feeling childish and wanting to be able to make a wish and make it all go away. I'd appreciate any tips for survival through this phase. Mindy

How I found your page: From a search engine
Comments about the web site: Hi all. I've now been let out of hospital with controlled BP and feel very calm (this is new!). A scan of my thyroid has identified loads of small (about 1cm diam) nodules, which my consultant says should not worry me (although some of the endocrine results are not back yet). Would any of you like to share your experiences with me? My brother is now being screened. I hope all tuns out well.

How I found your page: Member
Comments about the web site: I received my MRI results yesterday and they were negative for pheo ... however, they are still suspicious and had question about the MRI results. So now they're scheduling me for an MIBG to further rule out or find the pheo. After reading all the documentation out on the web and the postings by other members, it seems like I'm in the same boat with having overwhelming classical symptoms, yet they physically can't find the tumors. So I guess I'm at square 2 and will try to keep the chin up until they find what they're looking for. Thanks to all of you who have personally written me - I really do appreciate your concern, interest and support ... I only hope to provide the same back to any of you should you need it .... Take care all, and will be in touch soon! Claire :-)

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Comments about the web site: Dear Friends, we are all test driving a new "Water Cooler" type of Internet Chat at link: INTERNET ONGOING CHAT We hope this system is more effective in reaching those who couldn't access the IRC and Java Chat, or those whose time zones conflicted with the chat schedules. Please visit and take a look. Thanks, Mary

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Comments about the web site: After reading all the personal histories, I find it interesting that several also have diagnoses of fibromyalgia. Is there a link? I am very interested it this.

How I found your page: Guess ;)
Comments about the web site: Hi all. For any of you who may be wondering if I've dropped off the face of the earth, an update. My Endo. ( Let's call him Satan ) has diagnosed me with depression / anxiety disorder & told me that there is nothing wrong & one day it will ALL GO AWAY - Don't we WISH ??? Anyway, Satan decided to start checking my pituitary, just in case , but meanwhile must have forgotten that the Paxil he prescribed is a Serotonin inhibitor & that this may cause just a tiny lil problem considering he ordered SEROTONIN levels to determine the pituitary thing. Also, I am now scheduled for an MRI of the head & picked up yet ANOTHER 24 hour urine jug today ! But alas...... I found out from my friendly phlebotomist, that the ONE urine out of three that came back NORMAL was collected in the Wrong container with NO PRESERVATIVE !!!! Yet Satan STILL swears that the two abnormal results must have been a mistake. Of course Satan THAT is only LOGICAL, two out of Three are WRONG ....LOL Anyway, before I eat up all the board space. Symptoms have continued with some added features, profuse sweating ... Throbbing pulse in my ear .... etc. BP's still go as high as 190/170 on meds. PCP & Cardio. still think pheo, Neuro is undecided & Satan thinks I'm a waste of his good time. Actually, I hope he is right, but in my heart I know he is not. Keep The Faith everyone. Take Care & God Bless. Melinda

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Comments about the web site: has anyone with pheo ever had a low red blood count. leslie

How I found your page: From a search engine
Comments about the web site: Hello All, I haven't forgattten anyone and remain grateful for all of the support. and info.. which has been much more than I have recieved from any of the "doctors" whom I've encountered in the last year. .... Leads to a thought: Perhaps we could collectively establish a 'scho;arship fund ' (?) for those who may wish to pursue medical careers specializing in related fields ?.. Seems that with the exception of a few good Doctors at NIH (thanks) and NDRF (thanks), not many endocs know half as much as most patients and family have learned from the shared experience and info on this site. Melinda' "dr" is Satan" I've met him and his twin up here in Toronto, My news : homeless since June 1st. Just completed a regimen of accupuncture treatments, as a volunteer in a study of accupuncture treatments for sleep dis-orders. I may have recieved a "placebo treatment as this was a double blind study, comparing weestern and eastern mehods, still learned a lot, and acquired some breathing and relaxation excercisres which help a lot. For all on this site: Chinese ?or Holistic medicine does not claim to cure "tumours" but it can help with "side effects" of western treatments. For Mindy, and All: regasrding having "stopped Meds" in prep for the tests. and feeling terrible, I hope you're feeling better, I do know that anti anxiety medications should never be stopped "cold turkey".... the withdrawal effects can be awful. They will pass, but gradual withdrawal wuill ease the transition. ( the drugs often have a "half life of weeks" in the bllod).. Dietary supplements and relaxation techniques should help . I wish you the best with this.. In general, If any meds are ever prescribed, . please check the web for any info regarding side efects, addictiveness, withrawal etc. before taking them almost all antianxiety drugs are addictive.. especially the Benzodiazepams, some of which produce adverse reactyions in 25 % of those who take them !!! The cure can be worse than the disease, You do have a choice, there are alternatives. Thanks to all, and Best to all. Gary

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Comments about the web site: Hi all, it has been a while since I last spoke to anyone. At present had more tests done, spend overnight in hospital for some infusion which came back positive ( high aldosterone levels)but still they will NOT remove tumour on adrenal gland. Now I have to spend a week in hospital, going in on the 15th August for further tests. I am starting to feel like a research project.Although I am treated very well by all staff. In the meantime I have suffered 2 TIA ( minor strokes)in the last 2 months, due to elevated B.P. As far as I now know my condition is not a Pheo. but HYPERALDOSTERONISM.Will let u know how things go later in the month (as the saying goes 3 strokes, sorry, strikes and your out). I know sick but I need to keep joking otherwise a person gets depressed and that is just not me. Best wishes to all and my sincere condolences to Mary in regards to her cousin's untimely death. Take care Femme, Australia

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Comments about the web site: I have a question. Actually I have a lot of unanswered questions, but this is really bugging me. Does anyone else or does everyone else who has pheos have anxiety attack, panic attacks, etc. I believe I could like with the rest of my symptoms if I could manage my anxiety better. Actually, it manages me quite well. I take Xanax and practice relaxation, etc. but it is always there. But here is the thing...this symptom seems to be very "insignificant" to most health professionals. I would like to know, what if anything, you guys do to manage your anxiety. Thanks, Cindy

How I found your page: Link from another web page
Comments about the web site: does anyone here have info on Pheochromocytomas in children? My son is 6 years old and will be having an MIBG scan next week to cofirm a diagnosis of Pheo... he has all the classic symptoms as well as requiring 5 anti hypertensives(2 IV) to try (unsuccessfully) to control his hypertension. His 24 hr urine test has been repeated and shows Epinephrine levels 6 times the normal level for his age. from what i've read already this is a rare tumor even in adults and that less than 10% of all cases are children.. if anyone has any info on treatment/ stats ect concerning pediatric cases i would be grateful... thankyou :-)

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Comments about the web site: Dear Cindy, I noticed your post on the Pheochromocytoma Internet Message Board and I wanted to answer your questions. Everyone who has pheo that I know of has anxiety attacks. I have met 2 persons who claim they don't, but they often sound like they are about to come unglued. I don't know what else to call it? Super-Hyper? I won't argue with them, but to me panic or anxiety, the anxiety is the hardest part for me. I can deal with pain and illness, but when the panic sets in, it is like a roller coaster taking off downhill with no hopes of slowing down. I can't tell you why the health professionals don't see this as a crucial part of the illness that needs to be treated. It is a painful and unpleasant state of mind, and the fear or uneasiness of not knowing what to expect can be dreadful. I take Xanax, and have for over a year now. Up until a year ago I was bravely having a surgery every year (sometimes three a year). Last year, that all changed, and I discovered that anxiety can be one of the hardest and lonliest battles to face. What an awful surprise after assuming that I would always be strong for the rest of my life, because I had been up to that point. How do I manage my anxiety? Medication, and by reminding myself that I've "walked through this hoop of fire" many times before and made it back to this side. Take care, Cindy. And best wishes for some calm and happiness in your life. Sincerely, Mary Peebels

How I found your page: Member
Comments about the web site: Dear Dawn, Yes we have seen children with the pheochromocytoma. We have also seen research that has been done on children with this illness. I want to refer your questions to our support doctors at NIH because I am concerned that your son does receive the best care as soon as possible, with the most up to date tests and information. Sincerely, Mary Peebels

How I found your page: From a search engine
Comments about the web site: Hi all, I need some to ask those of you who have had bilateral adrenalectomy's and have adrenal insufficiency a question. I purchased a medical id bracelet and had it engraved. First of all I was dissatisfied with the piece. It is not worth near what I paid for it. But more importantly, the engraving is poor. The phone number for the Medic Alert organization is not 100% readable. The company I bought the bracelet from said they had no trouble reading it and therefore there is no problem. However, no one I've shown the bracelet to several people and no one has been able to read the phone number easily. Some can't even make out all the numbers. They also say the phone number is not important because the bracelet also contains the medical info describing my condition that will help medical personnel treat me. This is true, but I argue that the phone number gives access to other important info such as family contacts, doctor contacts (including my endocrinologist). For those of you in my situation, with bilateral adrenalectomy's, what do you think?? Also, if I an unconscious and in adrenal shock, it will tell anyone, emergency personnel or anyone else, that I have an emergency dose of steroids in my purse that should be injected. I've just recently had my second adrenal gland removed so the one question I need an answer to is: IF I AM IN ADRENAL SHOCK, HOW SOON SHOULD I RECEIVE AN EMERGECNCY DOSE OF STEROIDS? I know adrenal insufficiency can lead to death. My doc is unavailable at the moment and I don't know the answer to this question. Thanks, Suzanne A. in Md.

How I found your page: From a search engine
Comments about the web site: Dear Suzanne, that is an excellent question, and I have passed it on to the doctors and some of our technical experts in our group. Thank you for reminding us of this needed subject. We had discussed in long ago on a board, and in the meantime, we had forgotten about it. This is a great topic to discuss. As soon as I hear information back, I'll let you know. Sincerely, Mary Peebels

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Comments about the web site: Dear Femme, Thank you for your kind and thoughtful condolences. It has been a very sad tragedy. We are all trying to cope here. I hope this finds you feeling better, and I wanted to let you know that I appreciate your wit and wisdom! Sincerely, Mary

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Comments about the web site: Dear Suzanne: I too have no adrenal glands. I have had adrenal insufficiency since 1989. I do wear a medic alert bracelet. Mine is gold in color and I agree not easily read. I took a permanent black marker and rubbed it across the writing on the bracelet. I then wiped off the excess so the ink was only inside the engraved areas. I realize this probably sounds goofy, but it works...I've had mine on for 10 years. Also, in reference to your lack of adrenals, try not to worry so much. I have found if I take my Cortisone and Florinef and drink plenty of fluids and sodium I don't have to worry about a crisis. Take care of yourself. Cindy

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Comments about the web site: Cindy, Thanks for the input. I have a stainless steel id bracelet with the engraving dyed black. I asked a jeweler to do this on my new gold bracelet but he said it would wear off. I'll try the magic marker tho, or maybe some type of paint. If it wears off, no big deal. I haven't had any problems with replacement steroids yet. My twin sister came down with a kidney infection shortly after losing her ad. glands and ended up being hospitalized for adrenal insuffiency. That's why I worried about the reability of the bracelet. I know adrenal insufficiency can be dangerous ... and deadly. Thanks.

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Comments about the web site: Thanks so much for this web site. I have many of the symptoms that are listed in the member websites but fortunately have a very thorough endo doc and my HMO has an unrestricted testing policy. I go for my MBIG next week. Not sure if I should hope for a "glowing" report or not? A concrete diagnosis would at least end the mystery. This web site has sure answered more questions than my doctors! Mahalo from Hawaii.

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Comments about the web site: Hello Mary, I for one would NOT like to see a site like that for the Siberians! Egad! folks talking about their cancers and such...no thanks! Please if this is the format please do NOT link to my page!!!

Sincerely, Lynda Nelson

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Comments about the web site: I haven't talked to anyone in awhile, but was involved briefly earlier this summer asking some questions, etc. I had surgery on 7/23 and everything was very successful. My biopsy was sent to Mayo Clinic by my docs and it came back benign. I had the opportunity to go to NIH but opted to have the surgery done in our small but wonderful hospital at Lake Tahoe. My primary physician put together a great team of docs who had some experience in pheos and had priviledges at our hospital. I had the best care I could imagine, plus several docs who scrubbed up and looked on for education purposes during the operation -- should have charged them admission. This was the first adrenalectomy done in our hospital and I am so thankful for the success. It's now been almost a month and I am back to work and working out at the gym and playing 18 holes of golf. THank God for laperscopic surgery. I was in the hospital for two days and except for a few minor reactions to the anesthesia, I came out just great. BP is nearly normal, no palpatations, no sweating, feels great. The docs are trying to come up with some test that I can have every year to check things out, but so far nothing other than a CT scan or 24 hour urine. I suppose I could do that. They really don't know the long range outlook, but right now things are fine and I have been reading all the messages on the Board. I don't keep in touch much, but I do look in on you all regularly. Even tho I'm good for now, I believe that pheos will be a part of my life forever -- at least I will be on the lookout for them. God Bless you all.

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Comments about the web site: This message is to DAWN concerning your son. I sent a letter to Dr. Karel Pacek at NIH today and he responded with a letter to you. However, I may have given him the wrong email address for you. He said that they would be happy to see your son at NIH. I can forward the letter to you if you have not already received it. Let me know. Love, Debra

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Comments about the web site: Hi.I am a 31 yr old pregnant woman who is being tested for pheo. I am scared and confused. Does anyone have information on pheo and pregnancy. My ob/gyn is not up on this disease but at least she thought of it.Thank you.

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Comments about the web site: Dear Patricia, Hi. I am forwarding your post about pregnancy and pheo to our correspondent, Debra. I think your doctor should contact the doctors at NIH for both testing and information. Debra handles our correspondence and forms that your doctor would use for gaining information about your condition. She has experience with being at the NIH for testing, and she has met all of the doctors who are doing the research. If it turns out that you do have pheo, I want you to know that we have many in our group who have had pheo during pregnancy and have done well. It is just very important that your doctor be informed about the illness, and it sounds as if your ob/gyn is thinking ahead and looking out for you. You can browse our websites, and message boards, and see that many of us have gone through pregancies all right. Also, you have friends here, that you can contact anytime, with any questions. Sincerely, Mary Peebels

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Comments about the web site: Regarding emergency procedures for bilateral adrenalectomies And symptoms of Pheochromocytoma: In the event that you are in an accident(for people without adrenal glands) in which you are losing blood, have broken bones, or feel you are going to faint, or...you are about to undergo general anesthesia or major surgery or... are vomiting for any reason and cannot keep your regular medicines down, you must have a dexamethasone injection (4 milligrams)immediately and then get a doctor. 4 things to remember about the dexamethasone: the med., cannot harm you, if you have the slightest thought that you might need to inject it, inject it, you can inject it anywhere in your body, even through your clothing as long as it gets under your skin, it will protect you for up to 12 - 24 hours while you are getting medical help. I wear a stainless steel bracelet which reads: "Adrenal Insufficient" the reverse side says: Steroid Dependent, I have a medical alert cart in my billfold which is easily spotted. Pentagastrin tests, for those with MEN 11a, have been done to stimulate the (medullary) calcitonin producing cells in a persons body. What the test has been used for is to give a more realistic picture of tumor volumn in the body. It is a more sensitive test than the calcium infusion testing which had been done in the past. Usually there is distant metastatic disease in calcitonin levels over l000, e.,g., my own baseline levels are under l00, prior to my first surgery they were 3500. Pentagastrin is no longer manufactured, There are people with levels over 5000 - 10,000 still walking around, without the pentagastrin, baseline levels are only done now. When I had pheochromocytoma (rt., and left adrenals), I did not experience any anxiety type symptoms, I had heart palpitations, which I know can be associated with anxiety, but blood pressure being elevated r/o anxiety problems. I felt flushed inmy face and neck, and felt my body 'pulsating', unfortunatly lately, I have begun to notice some of the later symptoms, makes me wonder about metastatic pheo....hope not. Any comments? Please email with comments NBButler@aol.com

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Comments about the web site: Hi, My mother was found this pheochromocytoma ten years ago. The tumor is under her bladder, The doctor in china reluctantly to do operation to remove the tumor. My question is that if we have some medicine to control the tumor and prevent it produce hypertension... Thanks

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Comments about the web site: Hi to Lei, the previous entry. With regards to medication to control hypertension, most of our members use an alpha blocker or beta blocker or both. In some cases, as determined by the doctors involved, it is important to create an alpha blockade before starting the beta blockade. It is best to have a endocrinologist and a cardiologist work as a "medical team" to find what is correct for the patient.

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Comments about the web site: I had my left adrenal gland removed from pheochromocytoma a year ago. Before surgery I used exercise all the time and I had energy but since the surgery I have had no energy and I have gained alot of weight. I was wondering if anyone would know if it would be unsafe for me to take something like Metabolife or Vitala-trim (a fat burner)? I know these things boost your energy but I didn't know if it would mess with me only having one adrenal gland. Thanks.

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Comments about the web site: Darla, I sent you an email in answer to your question, but I think it is important to note to other members. Before taking any kind of medication, including over the counter dietary supplements, check with your doctor first. If your energy levels are low, and you are gaining weight, and if this is not due to eating habits, then you need to have a medical evaluation to make sure there is not something else going on. I am not familiar with the ingredients in either of the supplements you mentioned, but would still check with your doctor first. Take care and be well, Debra

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Comments about the web site: Hi. I have a couple of questions for anyone who is willing to answer..... about 1.5 yrars ago, I was found to have a benign tumor adjacent to my adrenal gland. The doctors said that it had probably been there for years and was not causing any problerms. However, I have been having dizzy spells ( unexplained), sweats, ( also unexplained), passing out randomly, high and low blood pressure to an extreme over the course of a day, seizures (random), and severe stomach cramps and the runs which they attributed to my Crohns Disease ( which really didn't make sense to me since usually something brings that on, which it has not..) I have passed out a number of times and even passed out in FRONT of the doctors, which they could not figure out. I have had many MRI's, CT scans and just about every other neuro test what all showed nothing except the benign tumor. Possibl;e that I may have pheochromocytoma? Any help you can give me would be GREATLY appreciated. You may respond to my e-mail address... which is: MikeGLevy@aol.com. Many MANY thanks... Michael

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Comments about the web site: Hi everyone. Well, my MBIG test was positive and now I have been passed on to my HMOs surgeon--scheduled for October 20. The surgeon says he will not do a biopsy of my pheo because it is too dangerous but he wants to send me to do a P.E.T. scan to see if it is malignant. Has anyone ever had this scan? Any data out there on it's reliability with cancer diagnosis (malignant vs benign)? Wish me luck--doing pretty well--Just finished my first 3 weeks on alpha blockers and my first week on beta blockers--not wure what they aren't blocking, but I'm mostly functional. God Bless!

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Comments about the web site: Hi all, Its good to be back in touch. I did have my bilateral adrenalectomy on 23rd Aug and was kept in rather longer than expected (c.3 weeks rather than 1 and I had to absail out the ward window :-)). It turns out the things were a lot bigger than anticipated, so it was full open surgery after all. A enlightening and humbling experience. I can now walk around the block which I am thankful for, as with any progress! I go for the follow-up results on tuesday - can you help with a question or 2? Firstly, my calcitonin levels were 'off scale' before the op and the first post-op calcitonin test was at the top end of normal. My genetic test is not through yet but my endo thinks its almost certainly Men2 so its likely theres thyroid probs. Should the calcitonin level change so much and what does it mean? Also - my endo is talking of removing the parathyroids with my thyroid rather than putting them in my arm - I am scared of the implications for the future if I agree to that - what if something goes wrong with my calcium metabolism after they remove them? Is it curtains? Or are the meds available really that good now? Its scary, please help. april@crystalw.globalnet.co.uk

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Comments about the web site: Hi everyone, again it has been a while since my last visit. Up to now I have not had surgery, but did suffer another TIA, which makes it three, well I am still here without major side effects. I spend 2 miserable days in hospital for neurological tests, which is another story. I had a genetic test and another 24 hour urine done, God knows why, and hopefully within the next week I will have Adrenal vein sampling. Then, YES, surgery. I am so confused about the whole situation it certainly is putting a stain on a person's life, not to mention family. But, life goes on, and you can't keep a good woman down hahaha, I might already stated that I have now been diagnosed with Conn's syndrome (hyperaldosteronism)if someone has this same condition please contact me through board or @. Take care to all, Femme from downunder.

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Comments about the web site: hi again, well I spent hours searching the net and found some interesting information on adrenal surgery. I thought maybe this will be valuable to people on this site. The following is the site for this info http://www.duj.com/Article/Vaughan/Vaughan.html

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Comments about the web site: I was so surprised to find a Support Group for Pheo Phreaks!

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Comments about the web site: Hello All, It's good to be back in touch/.. a place of my own and back on the net again..(!!) Still at the mercy of "drs." who haven't been able to arrive at a definite diagnosis .. but I am reaaly pushing them now . I am grateful for all of the support/ info/ and suggestions .. from everyone on this site.. and will try to re-establish correspondence soon. My New e-mail address is tchip@interlog.com ( Formerly "chipsel@interlog.com" ) Best to all and thanks to all Gary

How I found your page: From a search engine
Comments about the web site:

How I found your page: From a search engine
Comments about the web site: The connection keeps "timing out" when I try to reach the ezboard ..canot pull it up anymore. Would you please enter a hyperlink on this page so I can go there? thanks.

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Comments about the web site: Hi! My mother has had both of her adrenal glands out already and now she found out yesterday she has another somewhere else. Does anyone know a dr that speacializes in pheos? Also, has this happened to anyone else? 3 pheos?

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Comments about the web site: thanks, the ez board is working for me again.

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Comments about the web site: I need help. My 15 y/o son has always been in excellent physical condition as top athlete in 3 sports. Had very early puberty (age 8). July 98 had sports physical, blood pressure 130/68, as it had been all his life. Next month BP soared to 160/90. By March 99, was 168/128, 170/115, etc. and frequent tachycardia. Chem profile, thyroid function, lipids, all normal. Began cardiac w/u 7-99 & everything abnormal; EKG=rt. bundle branch block, ST-T segment changes; echo-cardiogram=left ventricular hypertrophy, tricuspid insufficiency, MVP. Stress test=rt. axis deviation, inverted T waves upon standing, BP 160/98 pre-test, 200/80 peak, 148/88 post, no symptoms but many abnormalities. Chest x-ray=cardiac enlargement. First pediatric cardiologist dismissed as essential hypertension, stated no further work-up needed. Went to Children's Hospital & new ped cardiologist put on Vasotec (no effect even at triple dose). I insisted on work-up for pheo. 24 hr. urine for catecholamine fractioning=elevated norepinephrine. Also, plasma renin elevated. Had I-123 MIBG scan done, told if normal would take approx. 1hr. 15 min. Child in machine for 4-1/2hrs., then told test "looked normal" with no extra-adrenal pheos or neuro-blastoma. Endocrinologist does not feel MRI or CT of adrenals necessary, even though MIBG often does not show pheos in adrenals. Does not return my calls, has never spoken with or written to referring physician (our GP). I find myself telling the cardiologist what the endocrinologist said and vice versa, and I have to call for all test results. Repea 24 hr. urine was supposedly normal so endocrinologist feels that no further work-up is necessary, in spite of fact that child has now lost 23 lbs. in 5 weeks for no reason, as appetite is normal and food intake is tremendous. Also, now has severe flushing from waist up with push-ups, and severe flushing of face almost constantly. In addition, has bluish discoloration along lower edge of cheekbones with greyish area under that, dry cough with exertion, pale after exertion except for flushing. I know these are classic symptoms for pheo. Having MRI of brain for pituitary adenoma tomorrow. Can anyone offer any suggestions? I read the articles in this website and know that quiet pheos may not produce adrenaline byproducts in absence of attacks. Child has had numerous attacks of severe hypertension, followed by return to relative normal for him, which is 150/90 resting, as stated. Please offer some insight. We will probably end up going to Mayo Clinic soon as no one in Chicago seems to be able to help. I am very afraid for my son, especially due to heart condition and cardiologist releasing him to return to high school basketball, in spite of warnings. He is not allowed to play football because of cardiac condition, yet no one pursues his situation. Thanks and hope to hear from someone, the more the merrier, soon.

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Comments about the web site: This message is to Kathy, I have personally sent you an email with my phone number, please call me. I think your son's case is very serious. I am surprised your physician released him to play basketball if he is experiencing discoloration, or blueness anywhere in his body...this clearly is an indicator of lack of oxygen in the blood supply. I have emailed my phone number...please call me as soon as possible...I live in NY. Debra

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Comments about the web site: Is there a really good adolescent endocrinologist in the Chicago area who deal with pheo? My son's endo and cardiologist (I wrote about him above) have decided they don't know what to do with him and I was informed of this today. We will probably end up at the NIH, but until then, and probably after, we need someone closer to home (northwest Indiana). Actually, we need somebody a week ago. Any suggestions from anyone? Thanks.

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Comments about the web site: Hello. I am a 28 yr old female who was diagnosed with pheo 2 days ago. I go for an MRI tomorrow and I am very nervous of what they might find. When one of my DR.'s said he was checking for this very rare condition, he explained that it was a benign, small tumor located on the adrenal gland. Now, when the other Dr. confirmed diagnosis, he said not always are they benign, and not always are they located on the adrenal gland. In doing some research of my own, I have found they can be located in hard-to-operate locations, such as around the heart and other major organs. I am glad I found this support group because I can tell I am going to need all the support I can get.

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Comments about the web site: Hello--I'm so glad to know "you" are out there. I need some sound advise from someone who can educate me about diagnosing/ruling out pheos as I'm undergoing testing for a possible pheo. I had a very sudden onset of symptoms in the recovery room after outpatient surgery and ended up admitted to the cardiac care unit. After many weeks of medications and cardio workup and visits to the emergency room (during subsequent "attacks") I am asked by endo to repeat all the previous labs (both urine and plasma). They have shown elevated levels of epinephrine each previous time but endo says the "levels weren't that high" and abdominal MRI "was normal" So now what? Is this just an endless series of 24 hr urines? When do I, as a very weary, alpha and beta blocker laden, anxiety ridden patient know what to do next? I won't trouble you with further details of symptoms and such, but I'd really like to know if this is supposed to be such a lengthy thing to diagnose. THANK YOU THANK YOU THANK YOU

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Comments about the web site: G'day everybody, Just a short note to tell you I am finaly having adrenal vein sampling done on the 15th November and then hopefully surgery to remove this alien growth. Also received results from the MRI scan, EEG and bloodtests these were neurological tests as I suffered 3 TIA's due to high B.P. the results were all NEGATIVE. Again positive thinking gets me through, this sometimes, miserable times. I bless my lucky stars for the support I receive from family, friends and your support site. Take care, until next time. Femme

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Comments about the web site: My above @ address is wrong, this is the right one.

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Comments about the web site: Hi everyone, I just arrived at work after collecting the results of my various urine analysis from my doctor. Everything was elevated! I'm going to see my new endochrinologist next wednesday (3rd November) ... I've been told I'll need a CT scan. I have to admit I feel pretty scared and aprehensive but in a way it's a relief that things are starting to happen.

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Comments about the web site: i am looking for anyone with MEN type 1. can anyone help me please?

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Comments about the web site: I've written about my 15 year old son. He has now undergone so many tests to find a pheo or pheos, and everything is coming back "normal." He is now down 24 lbs. since 8-23-99. I am so concerned about him playing basketball, tryouts start tonight. We had his blood sent to the National Institutes of Health, described here on the website (thanks again, Debra). Hopefully we will hear something positive from them soon. We also had a 5-HIAA performed, which is a 24 hr. urine to look for carcinoid syndromes. I wonder which is worse...if he does have a pheo or pheos, they're obviously going to be heck to find since even the MIBG is negative. Thank God for this website and the wonderful people who have shared their stories. It has given me such insight into pursuing my son's condition, which I will until they find something! I think I will go home and cry tonight, after he goes to bed.

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Comments about the web site: I suffer from the condition MEN TYPE 1.is there anybody else out there with some knowledge, or needs to communicate with a fellow sufferer.

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Comments about the web site: My mother is 71 years old. In early 50s she had a pheochromocytoma and 1 adrenal gland was surgically removed. Within a year she lost her thyroid to a tumor. She is now having the late evening spiking blood pressure (top range between 180 and 220), severe anxiety and nervousness--all symptoms she had with first adrenal tumor. If her other adrenal gland has a tumor and has to be removed---can a person live without either adrenal gland. I would appreciate any information anyone could provide.

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Comments about the web site: My son's MIBG scan, CT of the chest, abdomen, pelvis, MRI of the brain all came out normal. The test at NIH was 97% predictive of no pheo. Of course, as Dr. Eisenhofer e-mailed me, there is still that good old 3%. However, we saw our family physician Monday. He took my son out of basketball IMMEDIATELY due to his cardiac condition which has resulted from whatever in the name of sense is wrong with him. Interestingly enough, my son now has dilated pupils which do not react to bright light in a dark room (our doc tried it and was stunned). The pupils nearly obscure his entire iris. Also, the bluish discoloration along his cheekbones about which I wrote has turned out to be such an excessive edema around the eyes that it has caused a bruised appearance to his face, yet his face does not look swollen. It is dependent edema. Our local doc works in a group practice (I used to work with them) which includes his two brothers, their father, and two of their friends, so they all know my son. Jonathan is on Lopressor, 50 mg. BID which only afford very marginal help with his BP, and now one of the brothers suggested adding Cardura, 4 mg. at bedtime, although this can cause a lot of side effects. We're still waiting to get into Mayo Clinic (hopefully soon or we will go to St. Mary's Hospital which is affiliated with Mayo, and just have Jonathan seen in the Emergency Room--when they see this kid with dilated pupils, 26# weight loss in 6 wks., uncontrolled BP, and all the abnormal cardiac tests, he will probably be admitted stat, and then the Mayo physicians will be caring for him. It's our only alternative; if we have to wait for him to get in next year, I honestly feel he could be dead or so ill he won't recover. A doc at NIH offered to speak with our local doc but NIH is over 14 hrs. from home and it sounded like it was going to take quite awhile to be seen. So, we're opting for Mayo. If anyone has any suggestions about these bizarre dilated pupils, a relationship to pheo or any other of these diseases you are more familiar with than I, please e-mail me directly. Thanks so much and God bless all of you who are going through and dealing with these difficult situations in life-makes you wonder, doesn't it?

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Comments about the web site: G'day to everyone, Had the adrenal vein sampling done on monday, it was not to bad. Spend 2 days in hospital to have this procedure done, now it is waiting for results to see if one or both adrenal gland are bad. Halfway through this procedure the body decided to give me another TIA, procedure was stopped immediately and boy, action was taken. They put some stuff through the bun I had inserted earlier and within minutes things were back on track. I must say, I was scared, again I had no feelings in my left side, and truely believed I had seen the end. But as the saying goes, YOU CAN NOT KEEP A GOOD WOMAN DOWN, hahahaha. Anyhow, will keep you up to date. Take care, Femme

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Comments about the web site: I recently found your site and this message board. Exciting!!! In the past 2 years the roller coaster for me has not stopped. January 1997 my 18-year old daughter was diagnosed with Medually Thyroid Cancer (MTC), from there we found out that the MTC was genetic and that 14 of our family members were affected. My daughters (18 and 10) both had surgery and their calcitonin levels dropped to normal. I had my thyroid surgery in June 1997 and a second surgery for lymph node invasion in March 1998. Calcitonin still did not return to normal. My condition continued to be monitored by 3 month calcitonin readings, CT scans, MRI scans, urine tests, etc... Urine tests were negative, but CT scan showed some "nodules" on the adrenals. In June 1999 an adrenal biopsy was done and it was thought that I had distant metasis to the adrenals. Upon a bi-lateral adrenal surgery in August 1999, it was identified as a Pheo. Since that point my calcitonin level has doubled (verified by two tests). Does anyone have any ideas. My Doc. is puzzled and is trying to get a consultant with her mentors.

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Comments about the web site: My 37-year old nephew was recently diagnosed with pheo. He has had surgery to remove a spinal tumor which was causing his legs to go numb. They are not sure where the original tumor is/was, but have located additional tumors on his spine, lung, and pancreas. After he recovers from one more surgery (to put rods in his back to stabilize his spine where they had to remove part of it) they said he will have radiation - a little each day for 5-6 weeks. I'm nervous about having him treated at a hospital where there is so little experience with pheo (during the first surgery his bp spiked and he lost a lot of blood because the tumor was so vascular). Does anyone know of a cancer center or hospital which has a good success rate (or at least some experience) treating malignant pheo?

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Comments about the web site: have an update concerning Pat's treatmemt he has been having at Cross Cancer Institute in Edmonton,Alberta. This was treatment # 5, and again the results have been great. One tumor is smaller, the few others remaining are not registering "hot"...and still no side effects from the radiation. When we got back to Texas we had a report from the doctors at Baylor reporting that Pat's VMA continues to decrease and is registering NORMAL at this time. This is the first time it has been normal in over 10 years...He is now off one of the BP meds as his pressure has dropped to normal. This was a test taken before the last treatment..it just gets better and better. Along with this treatment in Canada he has been taking a few alternatives (for a year): IP-6 cell forte by Enzymatic therapy(www.enzy.com), New Life Colostrum, Nature's Plus Astragulas, and aloe vera by Carrington Labs. If anyone is interested in finding out more about his treatment please email me at caseber@aol. We are so thankful this Thanksgiving, and wish you all a good holiday.

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Comments about the web site: Hello. Thank you for the blessing that this web site is. Quick history, Lori is early 40's, with six children and me, first episode 20 years ago, with increasing frequency, now up to daily. My wife has yet to be diagnosed with a pheo (although an Endo in NY thought it a possibility in 1990) but both of us believe that is what we are dealing with and this site through your efforts is providing us with the ammunition to battle the "fraternity" of narrow minded doctors. We still need some info though: 1) How many of your members with pheos are also diabetic? 2) If so are blood sugars always high or only during an episode. 3) What else can cause elevated 5HIAA. 4) What is the etiology of the pheo tumor? 5) How does female menstrual cycle effect episodes, her symptoms flare tremendously right before her cycle. 6) Big Question: How high a BP above your normal does BP have to be to be considered high? And do all pheos come with high BP, without exception? Note: We have had several "negative" CAT / MRIs but checking with the equipment manufacturer the machines can only image down to 2cm and when the Dr was confronted with this he quipped "well at least we know there is nothing large", also you only get a picture where they aim and not all pheos are on the adrenals. We have also had every kind of botch lab test you can imagine. Here is a partial symptom list: 1) sharp stabbing pains in the abdomen and down the extremities 2) vascular spasms, head, arms, legs 3) headaches 4) abdominal bloating and cramps (seemingly spontaneously) 5) flushing in the face neck and chest (feels like she is on fire) 6) throat swells 7) BP rise but haven't caught a major jump (Lori is normally low though 91/58 her highs have been 139/85) 8) Eating "sets it off" 9) Faints (has done so dining out, in doctors offices, at the kitchen table, etc) 10) Heart racing, with multiple PVCs 11) Panic / wind up, or fight or flight which shoots down her arms and legs 12) Vision problems 13) Frequent urination, during an episode with tremendous thirst 14) Sharp pain in the right side radiating around the back 15) Catacolimines have been high, but not consistently. 16) Metanephrines also high but not consistently 17) Dopamine also high 18) Feeling like having an out of body experience, almost a dream like state 19) Her gut just roars 20) Dark purple mottled hands, one or both 21) Asthma attacks with it 22) Extremely high blood sugars bouncing (500 to 55 common +/- 80 to 100 point changes in 5 less minutes) 23) Feeling of impending doom 24) Constant fatigue 25) Spells wake her during the night I need to post this and get some rest. Please post the time (w/ zone) and link to the Sunday Chat session. My wife would love to and needs to participate. Thank you again for sharing your stories, trials, and wisdom, we can both appreciate the tremendous effort each of you is going thru and will pray for all the members. Still Sick, Lori and Paul(husband)