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    Old 03-06-2005, 12:41 AM   #1
    My Dad
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    Is anyone knowledgeable about Pheochromocytoma?

    Hello, everyone:
    This isn't an emergency, but I'm curious about something that happened to me in 1987. It involves something called Pheochromocytoma, & I'm looking for someone who might have experience with it. Even though I'm not worried right now, it might cause future complications, so I'm writing this. It seems that unlike my usual board I use to help my Dad, (thus the name), everyone here pretty much has something pretty rare which many on the board might have a tough time relating to. I'll try to explain mine for others who haven't heard of it.

    I got these strange attacks of something right out of the blue. The first time it happed was on my normal Sunday morning run. (Yeah, I used to be in shape, the key phrase being "used to be"). Five miles was usually my limit. But one Sunday in July at about mile four I suddenly realized something was wrong. I felt like a window had been put between my vision & the outside world. "That's strange" I thought, but all of a sudden my heart rate went straight to it's theoretical limit. I forget. Is it 220 or 210 minus your age? At the time I was 42. Yep, big 6-0 coming up in June. Anyway I rested about 10-15 Min. untill it slowed down & I started jogging real slow, but it started again. So I rested a little more & walked home. I wasn't afraid of a heart attack because any heart that can beat so fast, with no pain, must be pretty healthy. But I have to admit, it freaked me out a little.

    I forgot about it because my kids wanted me to take them to a movie, which I usually reguarded as "private time" for my Wife & I, but it never entered my mind that day. So, it must have been bothering me. Afterward my Wife wanted me to fix something, so I forgot about everything until the next day. But the next morning I was getting in the car to go to work. I started the car & my heart rate suddenly went straight to it's max again, and my lips turned numb & tingly! Now that's a sign of hyperventialting. I knew that symptom right away, because I used to get it when I ran the quarter mile in High School, always in the last 100 yards. I have no idea why, & the coaches couldn't explain it either. Go figure.

    But I was calm, It was just another manic Monday. I knew that because Madonna was singing it on the radio, if I remember right. I went in the house, it wouldn't stop, no pain, but it wouldn't stop! So I asked my Wife to call 911. By the time the first policeman came barging through the door two min. later I was sitting in the rocking chair tryng to be very calm, thinking that might help. It didn't, but I felt like I was helping myself. I told the police & paramedics & they thought it was just another overly excitable guy had a fight with his wife or something, & hyperventilated.
    But I must admit the paramedics gave me a nice peaceful $400 ride to the emergency room. I'm glad I didn't have to pay for any of it. (One quick off-topic comment: when my Wife died in July 2001, her "ride" cost $750. One way). The ER Dr. said it must be an inner ear infection, which was a nice way of saying "I don't know what's going on, but you aren't pumping blood on my floor, so go home".

    I realize this is getting long, so I'll tell the rest a little more condensed if I can. Good luck. Everyone at my main board just chuckle when I say that. The next attack was several days later. I was at work sitting at the desk we use in the Maintenance Dept. to write up reports on machines we fix. I had about two seconds of feeling something's not right, & then my head "exploded" from within. I actually felt like my entire skull, face too, actuall expanded out a little, like an explosion. & then went back. Kind of like what happens in a Buggs Bunny cartoon. At the same time, there went my heart rate again, maxing out. I just sat there 10-15 min. until it passed.
    For some reason it must not have bothered me that much, because I got busy on my next job and forgot about it. But not after the next time a couple days later.

    Again, I was at work this time. I was walking through one big bay of the Machine shop where I worked, & all of a sudden I sensed the glass window between me & the rest of the world again, & then a feeling that felt like God, or the Jolly Green Giant, or some other invisible monster put one massive hand on my back, the other hand on my chest, and SQUEEEEEEZED until my chest touched my backbone. And "he" was strong. It didn't take more than a second until it felt like my chest and my backbone touched. And then, just as quick, it was gone. But always, like all attacks, no pain. Then my heart went right back to it's max again. I kept walking right past the machine I was supposed to fix, & into the next big bay, welding. My heart wouldn't stop this time, & I was sure it wasn't just from being "freaked out". I always was sure, this was just the icing on the cake.

    I sat down on a gigantic 1 1/2 ton steel pallet that big parts were bolted to before being transported onto a giant computer controlled machine to be, well, machined. Like drilling, milling, tapping, that stuff. For what it's worth, I'm the guy who fixes the computers & stull on the machines. I'm no good with the mecanical things, thank God for our mechanics. I have a hard time telling which end of the wrench you use to hammer them bolts with.

    I sat there because that was where an old welder named Phil was working. He had seen men die in every gruesome type of industrial accident you can imagin, many in 50 degree below zero conditions which turned dead men into macabre "wax figures" with all the blood frozen solid in what he called "mid-scream". He worked 30 years on the "Iron Range", a large area in the northern- northeastern part of Minnesota, fairly close to Duluth, where taconite, or low grade Iron Ore that was used to make steel, was mined. It was mined out of gigantic open pit mines after many years of taking just the high grade ore before, during, & after World War II. But everyone lost interest in taconite when cheap Japanese steel hit the marketplace, & the whole Iron Range turned into all ghost towns. That's why Phil was down here in Minneapolis.

    He was the one guy I KNEW wouldn't panic if I keeled over. He'd just give me a kick to see if he could bring me around & then call 911 before going back to work. (Oops, this isn't any shorter, is it? But what the heck, it's about 2 AM here now, I know bedtime will cut me short soon, so let's see what happens). I sat there talking to Phil, & classic Phil, he told me everybody dies, & if I did he'd make sure my body got to the right place. Somehow that comforted me a little bit. But this time the heart problem didn't leave. Every time I stood up, there went my heart, going straight to its max. I tried that about 10 times over 90 min. before it settled down. THAT officially freaked me out, & chased me to a Doctor.

    But the night before my appointment I bought the 1200 page Readers Digest Medical book for "experts" like me. Since this thing really had my attention now, I read the entire 1200 pages in one sitting. OK, it took all night, but in the end I was down to two small paragraphs about something called Pheochromocytoma. I went to the Doctor, understandably a little scared. She listened to my story and said she wanted to test me TO RULE OUT!! (are you ready??) PHEOCHROMOCYTOMA!! say what???, I said to myself. I couldn't believe she said that!! Joy filled my heart. I even missed the part about RULE OUT. But I shouldn't have. I found out that when Doctors test to rule something out, they usually find a way to do exactly that. She had me collect my urine for 24 hrs, & sent it to the Mayo Clinic for testing. How would you like to have that mail rout every day?

    Anyway, the results came back & she said I didn't have it. She told me to go to Mental Health because I was obviously disturbed!! No Kidding, I was disturbed!! Well, I ignored that, I calmed down after a week or so, & I never had another attack in all these years.

    For those who don't know what it is, which is everyone except Doctors and sufferers, it's a rare, usually nonmalignant tumor that grows on & possibly in one adrenal gland, & very rarely, in both.The adrenal glands sit on the back side of each kidney. This tumor irritates the adrenal gland & causes it to give off massive shots of adrenalin, which can possibly kill you when you stroke-out. They also can just cause dangerously high blood pressure & maybe no symptoms untill a blood vessle breaks & you either die or become disabled if you're lucky.

    What I didn"t know at the time was the urine tests will come out negative unless they are gathered right after an attack. Also the Pheo can turn cronic and just cause moderately high uncontrollable blood pressure for years, which I have. I'm talking 190/110, nothing works, & the Doctors laugh when I mention the Pheo episode. And, they're not too concerned about my blood pressure. Of course they're not concerned!! It's not their blood pressure!!

    They just keep changing meds, & changing meds, on & on. My good old updated Readers Digest book for us experts says Drs. should seriously consider Pheo in cases like mine. I guess Readers Digest isn't required reading in Med school.

    I personally don't care what causes it. I just want it fixed. Does anybody have any good advice on a Dr. who will seriously consider Pheo? It looks like I have to solve this problem myself, & I have to start somewhere.

    I'm sorry this took so long. This late at night you think "what the heck, nobodies up anyway, forgetting you won't read this until tomorrow. If nobody can relate, well, at least I hope my story kept you a little interested. Thanks for your time.
    My Dad

    Last edited by My Dad; 03-06-2005 at 01:02 AM. Reason: spelling

     
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    Old 03-29-2005, 08:24 AM   #2
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    My Dad.....Just this morning I got a phone call from my mom telling me that my little brother who's 40, is being tested for Pheo. For about 3 years he has had tachycardia (increased heartrate up to 220/min) and high BP's and has been treated with lopressor and other antihypertensives with minimal help. He would blackout while driving but with the meds was pretty much controlled. the doctors temporarily diagnosed him with POTS (postural orthohypertensive tachycardia syncope) which translates to a sudden rise in heartrate that causes a suddenrise & drop in blood pressure which then causes dizziness or blackout spells. It's a sypmpathetic nervous system problem. Well over the weekend his symptoms worstened to the point of his blacking out even when on the meds. A doctor is now testing him for this rare disorder that Goody cannot find any info even over the web. Your post is the only info I have found and I am hoping that you will check in here and let me know where you are at so that I can direct my brother in the same direction. Right now he is on the 24hr urine test. So please...any info you or anyone else can share here with me would be much appreciated. My brother lives in Delaware and has access to medical centers in New Jersey and Maryland. He was hositalized the last time for almost 2 months trying to diagnose him which even up to this point the doctors are perplexed in definitely diagnosising....the closest thing is POTS.

    I look forward to any info you may have to share in helping my brother out....thanks....Goody

    Last edited by goody2shuz; 03-29-2005 at 08:26 AM.

     
    Old 04-10-2005, 12:30 PM   #3
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    1 year ago I had a CT scan done to look at my appedix because of abdominal pain that had lasted almost 2 weeks (my BP was also high, but they thought it was due to the pain). My appedix was fine, but I had tumors on both adrenal glands. The ER Doctor who didn't know anything about Pheo's put me on Metoprolol, a Beta Blocker and told me to see my regular Dr. asap.

    So started my journey of Pheochromocytoma. The Beta Blockers put me into hypertensive crisis, a week later when they figured out that I really had a pheo, they moved me to alpha blockers instead. Took 2 1/2 months to get my BP under control and blocked.

    I found out that vonHippel-Lindau Disease runs on my fathers side of the family. (I had just recently met my father again after him leaving when I was 6 years old and never returning). I had my left adrenal glad removed last May with an 8cm tumor. They left the one on the right side becuase the MIBG test (finds the tumors) did not "light up" on the right side. That is fortunate for me because my surgeon does not do partial adrenalectomys and would have taken both out.

    In Nov. I started having "episodes" again. Quite mild compared to before, but enough for me to think that my other pheo is active part of the time. My Dr. suggested that maybe I am doing it to myself (it's all in my head).

    In January I started a pilot clinical trial for one of my other manifestations of VHL at the National Institutes of Health in Bethesda, MD. The nurse I saw there to make sure that us VHL people were healthy enough to participate in the study actually knew all about VHL and it's manifestations. She got me in touch with the Urilogical Oncology Dept there and I was seen on my last trip- they have done tests and imaging and actually believe me that something is not right. I will get results end of next week and meet with them again next month for a plan of what to do.

    If you think you have a pheo, do your research first. The Pheo Board that Merril gave you the link to is a wealth of info. Also the NIH site (nih.gov) has additional info on pheo's. Make sure your Doctors are performing the correct tests. 2 urine tests should be done: 24 hour Metanepherines and 24 hour Catecholamines. There is also a blood test: Plasma Free Metanepherines. If your Doctor doesn't believe you should be tested, find one that will do the tests. Make sure that you follow dietary restrictions that go with the Urine Met. test and the PFM blood test, no restrictions with the 24 hour catecholamines. All urine collections must be refriderated the entire time you are testing.

    Whatever is going on with you, be persistant until you and your Doctors are able to figure out what is causing it.

     
    Old 04-20-2005, 06:39 AM   #4
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    Im so sorry for your pain. I do know that the pheno tumor is considered a cause of cushings disease. You might want to find some more info on that; i have cushings too, but it is from taking corticosteroids. Best!

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    Last edited by whatamuse; 04-21-2005 at 06:55 AM.

     
    Old 04-28-2005, 12:58 PM   #5
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    I'm awaiting the results of several tests, mainly for my heart to rule out heart problems. But the Cardio also had me do the blood test for Pheochromocytom and I should know the results next Monday. My symptoms started almost a month ago, with a panic feeling and adrenaline rush followed by my heart rate going up. I've had multiple episodes, with my heart rate being higher than normal inbetween (although the cardio put me on Atenolol, which seems to lessen the symptoms and higher HR). My blood pressure was only a little above normal on my last cardio visit, but I've read that some people with Pheo don't have high BP. Other symptoms are being cold during the "episodes" (which happen more at night), weak/tired feeling (which could be from a combination of taking the Atenolol, not sleeping well and then taking sleeping pills), stomach ache and no apetite (could be stress?) and lately small headaches. My main concern in the mean time is a stroke! I'm a very healthy 46, have run for 25 years, eat healthy, moderate drinker, etc. This is all driving me nuts and I don't even know if I have it or not, but there doesn't seem to be a lot of information.

     
    Old 04-28-2005, 05:38 PM   #6
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    katidid95 - just curious ...how high does your heart rate go when you have your episodes? Do you also get hot/cold flashes? I have been getting them and wondering about Pheo also. Did not see dr yet. I am on Atenolol also. I awake in the middle of the night feeling hot, then turn cold, sometimes get nervous, sometimes not, and I am wondering if its stress related rather than an adrenal tumor. Can you describe your "adrenaline rush." Thanks.

     
    Old 04-28-2005, 06:00 PM   #7
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    I forgot a few things. I have read a lot on pheos and there are somethings that are telltale. First is high blood pressure, second are severe headaches, third is a rapid heart beat and fourth is severe perspiration. Do you have these symptoms. Do a ****** search on pheos and there is a wealth of information. Let me know.

     
    Old 04-28-2005, 06:08 PM   #8
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    lolasmon:
    So far I haven't had any hot flashes. The cold flashes have actually eased up a bit, but were pretty pronounced the first couple of weeks that this started. As soon as I would feel the adrenaline rush, I would start shivering. The adrenaline rush, the best I can describe, is like when you are awakened out of sleep by a phone call in the middle of the night and you feel that panic feeling rush up your chest and into your head, then the heart starts pounding. Before I was on the Atenolol, it probably went up to about 120 HR, but I never really counted it. Then inbetween it would stick around 80-90 (mine's normally about 65-68). Initially I went to the ER and they didn't "capture" the episode and said otherwise my heart seemed okay. Then my GP refered me to the cardio where I'm still waiting for these test results. The adrenaline rushes are more pronounced early evening, all night and into mid-morning. Usually, during the day, I don't have symptoms other than being tired and feeling weak. The last few days I've also developed mild headaches that come and go and when I get the adrenaline rush, it seems to just be in my head, sort of a tingling sensation, and my HR goes up a little (although the Atenolol keeps it from really racing). I've also had chest pains/aches off and on, sometimes worse than others. My GP also gave me sleeping meds because the "rushes" would literally keep me up all night (and I think I've just been stressing about it all. Sorry this is so long - I feel like a real baby today. I cried all the way home because I felt pretty good at work today, but started feeling tired, then in the car just felt some pretty strong "rushes" in my head, felt kind of dizzy and had to forego stopping on the way home. I have a pretty long commute and felt VERY uncomfortable driving. I haven't been back to my GP because I've been waiting for the cardio and pheo results, but not I'm feeling like maybe I should have been pursuing something with the GP all along. Have you been having your symptoms long? BTW both Dr.'s did not think my symptoms were panic/stress because of the duration.

     
    Old 04-28-2005, 06:16 PM   #9
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    I have read that sweating is symptomatic with pheo and a major one at that. I dont know how old you are, or if you're female, but I think you are. Are you menopausal?

     
    Old 04-28-2005, 06:24 PM   #10
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    Please lookup the word cushing's on the internet. You might find some info there about this type of tumor, and the many symptoms involving it If you havent already that is
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    Old 04-28-2005, 06:30 PM   #11
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    lolasmom:
    I'm 46 and in perimenopause - having some menopausal symptoms but still having periods. I have in the past had the occasional hot flash, but without sweating. I had a prescription for progesterone cream, but because of all my stuff lately I haven't been using it - and on top of everything had 2 periods in 2 weeks

    So, yeah even the cardio mentioned the not-sweating, but went ahead with the test anyway. I also don't have high blood pressure (it was only slightly elevated), but then not all those with pheo have high BP.

    I've read some info on the internet, and on one site they listed about 12 symptoms and I had 6-7. I'm wondering now if I should call my GP tomorrow and get in no matter what the tests come up with, because if it's not pheo I want to know what the heck is wrong! Have you been dealing with symptoms long?

     
    Old 04-28-2005, 06:34 PM   #12
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    and on top of everything had 2 periods in 2 weeks

    ME TOO! Argh. They stopped for 6 months 2 years ago, now its crazy
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    Old 04-28-2005, 07:00 PM   #13
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    katidid - since you say you're perimenopause maybe some of your symptoms revolve around that condition. I am past peri - guess I'm post menopausal and when I was going through menopause I had so many problems that they could have been attributable to so many illnesses. It was one weird problem after another. Maybe this is all related to your hormones, not adrenal tumors. My problem started last year and has increased a little as I get the episodes more often. But I am leaning towards stomach problem b/c I also have excess gas and bloat. But who knows! I have been taking small doses of Xanax and it has helped me feel better. I guess you'll know about the Pheo on Monday or so. Pls let us know what the results are. I am especially curious. Also, I'd talk to your dr about the possibility of this being normal perimenopausal problems, as I said.....I could write a book about what I went through at that time. Crazy symptoms.

     
    Old 04-29-2005, 08:24 AM   #14
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    I will certainly post my results one way or the other. While I've been frantic that something is wrong with my heart, my feeling now is that there is something else going on that is causing my heart palps and all the other symptoms. With as much as I've read about peri- and menopause, I've never seen anything that matches my symptoms. But I wouldn't rule out maybe a combo of things. I do feel like things aren't getting better and now the head pressure/headache thing is worrisome. I think I should make an appt. with my GP for a follow up right after I see the cardio on Monday. The nurse at the cardio's office told me that he did see an abnormality in my echocardiogram, but it is nothing to be concerned about (easy for him to say) and that it had nothing to do with my symptoms. Anyway, thanks for your reply posts! All this waiting is much too much!

     
    Old 05-03-2005, 08:39 AM   #15
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    Re: Is anyone knowledgeable about Pheochromocytoma?

    My test for Pheochromocytoma came back in the "normal range", so I don't have the disease. I met with my cardiologist yesterday, and while he found an abnormality in one of my valves (something I was born with and shouldn't cause any problems until later in life and maybe not even then) my heart is okay and is not the cause of my heart palps and elevated HR, etc.

    So I'm relieved that basically my heart is okay and I don't have some of the other diseases/tumors he tested for. I have to say that my symptoms have been getting better over the past few days. He suggested I taper and get off the Atenolol, which I'm doing (don't need it!) and wait to see what happens. I'm a little more impatient than that - I'm seeing my GP on Wednesday. I just want to know what happened to me so I can prevent it from happening again!

    lolasmom - Thanks for your interest. I hope things go well for you. I'm certainly interested in having my hormones checked out. I just bought a book by Suzanne Sommers (can't remember the name, but it's her latest book, something about the "Sexy Years", but it's all about her search for treatment for menopause, and how she dealt with HRT with her breast cancer. It's about bioidentical hormones and how to work with Dr's and endocrinologists to get the right HRT. I just started the book, but certainly seems interesting. I just quit my progesterone cream during the past couple of weeks when I felt so bad.

     
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