Adult diagnosed cystic fibrosis

Retroperitoneal fibrosis anyone? nm [2008-08-27]

A friend of mine was not diagnosed with CF until his [2008-07-22]
early 20 Since he was born he was in and out of the hospital, had numerous test done, sawnumerous doctors and specialists for YEARS. Not ONE of the doctors diagnosed CF. They always said allergies, pneumonia, bronchitis, etc. Finally, he went to a doctor who walked into the exam room, took one look at him and said, you have CF. He has nubby fingers and a very small stature. He His body is unable to hold in food that he takes and therefore is unable to gain weight, etc. and food usually goes through his body in about an hour. He has more stamina then I have but he may need a double lung transplant in the future and is on the list. The average life expectancy after transplant is 7 years (that's if the organs are not rejected). You His motto is It When I complain and and too tired I think of him and he gives me inspiration and helps put things in perspective. Chin up and good luck.

Adult-diagnosed cystic fibrosis [2008-03-16]
Hello, everyone. I For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult. I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a stomach bug, but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathingand I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came. I was immediately diagnosed with pancreatitis. The only risk factor profile I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital. My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since. Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis. Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn For whatever reason, they finally began to explore the real reason for what they finally conceded was my chronic pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis. Without any prior opportunity to ask questions, without any informed consent and without the words cystic fibrosis ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6. I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my employer-provided health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldndiscriminate. (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.) However, I The root cause may be cystic fibrosis. If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once youofficially diagnosed, you can I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away). From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having. I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this mystery pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt fine and chalked it up to being in bed in the hospital for 11 days. I challenged the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas. I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease. If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more insurance friendly state or find another means of securing insurance). However, I wasn As I said, I never heard the words cystic fibrosis uttered in my presence. (I found the testing laboratoryInformed Consent for DNA Testing form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the informed consent with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.) I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease. I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition. Please deposit this information into your memory bank in case it may someday apply to you or someone you love. CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN (In fact, the original name for cystic fibrosis was cystic fibrosis of the pancreas.)

I almost wonder...sm [2008-08-16]
I have lupus and celiac disease and I am lactose intolerant too. Lupus causes skin problems and I thought that was the only issue, then I was diagnosed with celiac. I would bouts of itching, hives, numbness, tingling in the extremities and seemed to be allergic to the world. It turns out isn't the world, just wheat, barley, rye and anything contaminated or derived from these things. When I control carefully with diet, I don't itch, having hives, tingling arms and legs, etc. and my balance is much better too. Because so many things have cross contamination it seemed like I was allergic to everything, but thankfully not so. Have they scoped the first part of your small bowel and biopsied to be sure? You'd have to be on a high gluten diet for at least a month before they test you, I do know that. It is a shot in the dark, but you just never know. There are many symptoms that go with celiac...shortness of breath after eating wheat stuff, terrible gas, protracted diarrhea, malaise, rashes on the arms and legs, tingling and numbness in a stocking-glove distribution, bloating, allergic shiners under the eyes, pasty looking dry skin, dry mouth, fatigue...

Please see post. [2008-08-11]
I This is a very complicated disease, and as I said, my first symptoms were with my pancreas, though since then, I I certainly wish him luck with his transplant. At 31, he's very young and has a lot of living to do! Just as you pointed out, any time I even begin to think why me, I'm stopped in my tracks before I even finish the thought because I think of people like your friend and particularly all the babies and young children who have either died of this disease or are now living their lives while fighting for every breath. As far as beating the odds, you I was born with this disease but didn I am getting sicker and unfortunately may wind up in the hospital before this week ends, but if I die tomorrow, I will have had the opportunity to have lived my life. The main purpose of my post was to let everyone know that this isn Although your friend spent a long time being misdiagnosed by the experts, I truly believe there are many others out there who have this disease and don I just want everyone to know that it can be diagnosed at any age, and as you so eloquently pointed out, the experts often miss this diagnosis, so patients should be proactive, and if they develop chronic pulmonary or GI problems out of nowhere that are deemed idiopathic, they should keep the possibility CF in the backs of their minds, just in case. Thank you for your post, and right back atcha!!!

First off, Hello everyone.........sm [2008-07-23]
this is my first time on this board. I am 43 yrs old, suffer from fibromyalgia. I have had this pain for about 1-1/2 yrs but got officially diagnosed in September of 2007. I have been on narcotics, tried different types of meds like Lyrica (BAD side effects) Prozac, wellbutrin, neurontin (made me swell), Lortab, Xanax, Flexeril. Well, the Lortab and Flexeril helped at first, but Lortab does nothing for me, so my doc put me on Percocet 10 mg and I am still on Xanax. I was also started on Cymbalta (2nd day).....She told me to take it at bedtime, but I am WIDE AWAKE but she says this will wear off after a while. I had to quit a good paying job with health benefits because the stress of that job was making me have a nervous breakdown, I was hurting 3 x more than the normal pain and the company, well that is another story for another time. I have gone thru testing for lupus, MS, RA, etc.....I just got another job as an employee but still wondering IF I should take the insurance, which I probably will not as it is WAY too expensive. I am not even sure I will last at this job as an employee because shift work just does not work for me anymore. I am so tired of always being in pain, having to pop pills and feel like a druggie and I am so afraid I will get hooked. Well, I know this is long and if you read up to this point, thank you...I have started the application process for disability because this disorder has me in the poor house as I am unable to keep a job because of this. I know they may not approve me, OR if they do, it may take years.... Anyone with FBM, what do you do, what meds are you on, how do you cope without feeling like you just want to cry and scream and control the mood swings? I also take magnesium, fish oil, B vitamins.... I push myself just to sit at this computer to start working. The company I was hired with, they let me tell them what hours I preferred and of course, I chose hours to start later in the mornings (mid mornings). Upon awakening, it takes me a good 3 hours just to get myself together, I do my stretches, I take my meds, take a bath/shower, get dressed, fix hair, and put my makeup on. I try to do everything before all of this happened so that I can at least feel like my old normal self....but is is so hard. Please excuse the typos, I am now just getting groggy and will take advantage of that and hit the sack.

A friend of mine was not diagnosed with CF until his [2008-07-22]
early 20 Since he was born he was in and out of the hospital, had numerous test done, sawnumerous doctors and specialists for YEARS. Not ONE of the doctors diagnosed CF. They always said allergies, pneumonia, bronchitis, etc. Finally, he went to a doctor who walked into the exam room, took one look at him and said, you have CF. He has nubby fingers and a very small stature. He His body is unable to hold in food that he takes and therefore is unable to gain weight, etc. and food usually goes through his body in about an hour. He has more stamina then I have but he may need a double lung transplant in the future and is on the list. The average life expectancy after transplant is 7 years (that's if the organs are not rejected). You His motto is It When I complain and and too tired I think of him and he gives me inspiration and helps put things in perspective. Chin up and good luck.

To Donna regarding RA [2008-06-18]
I was diagnosed with RA three years ago. I completely understand about prednisone and weight gain. I was between a size 6 and 8, and after being on prednisone for a few months, I went up to a 10 and then leveled off at a 12. That isn and have really small bones. My advice there would be to do as much exercise as you can, anything to help counter the prednisone. Exercise will help with your stress level too. The prednisone was a high dose initially to help get my RA under control. Several months later, I went on methotrexate, 6 pills/weekly. Then in Sept 2007, I started on Remicade, which works along with the methotrexate. It's very expensive, but I feel better than I have in years and my inflammation is finally under good control. I also have a lot more energy, so I've gotten back to my exercise regimen and am slowly getting my weight under control.

Depo provera and fybromyalgia [2008-05-29]
I was not aware of any connection between Depo Provera and Fibromyalgia. I had Depo injections in 1987/1988. I became unwell in 1993. In 1999 I was diagnosed with CFS. I have seen 3 neurologists who all agreed the diagnosis. My partner is a Senior Biomedical Scientist here in UK and he suggested I ask for a c-reactive protein test and Rheumatoid Factor test late last year. Both had a positive reading. My GP said they were False Positives. I had to pay to see private Rheumatologist and early this year I was diagnosed with Fibromyalgia. Further Bone scans showed I have Rheumatoid Arthritis. This results is after 14 years of no real treatment. Could this have any link to my using Depo Provera for 2 years 20 years ago? I have seen other articles from the states about a link and wanted to add my plight to the debate. I would be grateful to find out more. www.helen419@btinternet.com

Thank you. Please see message. [2008-05-19]
Thanks very much for your post and your prayers. My main intent in posting was to inform people that this disease can be diagnosed in adults, even after having a relatively healthy childhood and adulthood. In all the medical notes I've ever done, I have never seen a newly-diagnosed case of CF in an adult. My second intent, admittedly, was that I was/am very angry about the way this DNA testing was conducted, and I wanted to warn others out there that this could happen to them, as well, and if they're uninsured when the testing is done, they're not going to be able to get health insurance if the test is positive. I did contact several attorneys over this matter. They were either uninterested in my case or were already being treated by one of the physicians in this large monopoly of specialists that spans several states. I also contacted HIPAA, but they didn't feel this fell under their purview. The last thing I did was to contact the State Board of Medical Examiners (with a copy to the State Medical Society). I received a reply from them just a few days ago wherein they informed me that they had opened a file and are planning to investigate the case. About a month ago, I applied for Social Security Disability benefits (as well as SSI benefits, since my income is now so low). I hear that 75% to 80% of these cases are denied on first try, so I'm not holding my breath (no pun intended). The SSI program is a needs-based program. It's basically welfare, and I almost requested they not file that application because I felt so ashamed. I had never been on welfare in my entire life. However, I DO need the medical insurance desperately, and even if I were approved for and began receiving Social Security disability benefits TODAY, I wouldn't be eligible for Medicare for roughly 2-1/2 YEARS, whereas medical assistance is immediate with SSI. I'm still working as much as I can (which isn't much). I'm hoping my employer doesn't fire me because my job is the only source of pride I have remaining in my life these days. As far as your adult-diagnosed ADD, I'm very sorry to hear that. Are you taking medication, and if so, is it helping at all?? I hope you can get treatment and that the treatment helps. For a while, I thought I might have the same thing, but then I realized all the drugs I'm taking would be enough to cloud up the brain of a genius, so I'm pretty sure that's not what is causing my inability to concentrate, etc. In your case, it seems that youAHA moment, where you can look back at your life and realize that this is a disease you've probably had all along, but, as you said, medical technology is advancing, and we're learning new things every day. Certainly, nobody knew of or much about ADHD when you were a child. I never had an AHA! moment with this. About a dozen years ago, I had my gallbladder removed because of stones. I had a hysterectomy due to a prolapsed uterus in 2001. Inormal folks. In fact, before I became ill in 2006, it was probably close to a DECADE since I even had a normal cold! In July of 2007, I apparently had pneumonia during one of my hospitalizations, but I didnproblem or even feeling as if I had a cold. The first really bad cold I felt was during my hospitalization in August of 2007, and, ironically, that was my best oxygen hospitalization out of all of them; I needed very little, if all, oxygen during my hospital stay. The cold, however, was the worst I had had in my entire life. I even complained to the nurse about it (which I never ordinarily would have done with a normal cold). That was the same hospitalization when the DNA test was taken. I was fortunate enough to visit National Jewish Medical Center (about 80 miles from my home). My doctor is the director of the Adult Cystic Fibrosis Program there. He said I have TWO disease-causing mutations. He told me that my pain will eventually stop once my pancreas totally destroyed and replaced with scar tissue. (I've read that people with chronic pancreas have an increased chance of developing pancreatic or other digestive cancers, and my mother died from colon cancer.) He said, instead, lung disease is probably what will kill me. X-rays showed bronchiectasis (which they said is secondary to cystic fibrosis), and my PFTs were abnormal, but my pulmonary problems aren't the main thing with me right now. In fact, although I'm noticing an increase in sputum production lately and the tendency to become short-winded more, this part of the disease seems to be something that is coming on so slowly that I barely realize it, for which I'm very thankful. I think, other than my loss of pride as a human being, the main thing that saddens me is all the children and babies that have died from this disease, and I feel very guilty if I sound like I'm complaining. I'm NOT complaining (except for the way the doctors acted), because I feel so fortunate to have been on this planet for all these years that if I die today, I will have at least had an opportunity to live my life that so many babies and children weren't fortunate enough to have. As I first wrote, though, please keep my experience in mind, in case someone you know and love suddenly develops digestive problems that canidiopathic and become chronic, and tell them to be certain to have insurance before agreeing to or requesting a DNA test. If they have cystic fibrosis, the CF Foundation offers to assist in the payment of premiums if someone caninsurance wouldn't pay. Again, thank you for your prayer, and I will send out one to the Big Guy for you, as well. I truly hope you can find a medication that will help with your ADD. (By the way, I donjust ADD; it's a disease that can really mess up your life!)

Not interested or understanding [2008-05-19]
I don't have MS, but I certainly can relate to being left and with no one being interested in learning about the disease process. In 2001, I had a hysterectomy, cystocele and rectocele repair and bladder suspension, and my boyfriend of six years decided that three days before my surgery would be a good time to leave. I think it was the emotional loss (as well as the monetary loss since he contributed to the bills) that hurt the most. Fortunately for me, I had two great friends and an aunt who had keys to my house and would stop over all the time to see if I was okay. (I felt okay, but stupid little things, like removing an ice cube tray from the freezer, were difficult in the beginning.) So I can relate to being abandoned and the hurt it can create on so many different levels. I I live with my daughter now, 2,500 miles from my home, where I was born and raised. (Ironically, she takes Provigil herself!) Now that I She has called me lazy during some of her angrier moments, which hurts more than I can express in words and just adds to my own sense of worthlessness. She Every now and then, I do mention something in the form of a what my body joke (for example, when goofy or weird things happen with my body, I look to see if these are components of CF, and nine times out of ten, they are.) It however, I Maybe holding someone you love at arm's length and acting aloof is their way of preventing the emotional pain they might feel if they truly accepted the fact that you have a serious disease. (Or, as in the case of my boyfriend, they're just plain creeps!) My daughter and I did have a discussion regarding my death just last week. (At this point, IMe, since I think it Many posters on this board are married and not alone, but for those who are alone with no life insurance, please read my P.S. post above.) I personally am grateful for boards like this because sometimes, it's the only outlet we have to just vent or to ask questions. I know there are CF and Pancreatitis boards on the internet. I've learned quite a few things from reading posts on these boards, and I've found that finding a community of people with the same disease is very helpful because they DO understand the disease process and what you're going through. I wish good luck and the very best of health to both of you. I will keep you in my prayers.

MS anyone [2008-04-23]
I am new to the site. I have been a Transcriptionist for about 20+ years, but the last 10 I have been home, just doing some clinic typing for radiology or whatever. My husband left us (my 3 kids and I) about 7 weeks ago and now I have to go back to work full time. I was diagnosed with MS in 2007, probably have had for several years prior, but diagnosis takesa while. My question is this, does anybody else have MS and what do you do during your day to help you,. I am kind of afraid of sitting too much, so I figure I will have to get up frequently. Anyway, just looking for support I guess. I see quite a few people with FM and Iknow that MS and FM mimmic each other a lot.I am wondering if maybe a specific chair helps with nerve or muscle pain? Thanksin advance for the input.

spoon theory [2008-04-23]
someone sent me a link to the spoon theory right after I was diagnosed, and I have sent it to many others since then. It truly is a good way to represent how we feel to people.Even my stbx doesnt get it. He has taken no role in trying to learn about MS or anything else, which is probably why itmakes it so much easier for him to walk away. Anyway, thanks for the support, as I am sure you know, we all need it. I hope you are well. I have a coup9le of friends using Provigil and they love it too! I actually have an appointment with my neuro today, maybe I will ask for it! Although I am sure my insurance won Oh wel, thats what we pay themthe big bucks for right?

Thank you for [2008-04-19]
this valuable information. I sympathize with you, and I am outraged with you at the way this testing was done without any regard for what we know to be the standard procedures. If you can find the energy, I hope you will file a complaint with the medical board for that state, and also see if you can get any free legal advice. If this was, by chance, a HIPAA violation you might be entitled to $250,000. I just don't know if those laws would apply to your case or not. I have also just been diagnosed with something normally diagnosed in childhood, but mine is just ADD. I'm in my mid 40s, so even though I knew I was having major problems when I was little, nobody knew about these things in those days, and there was no help. I just thought I had depression and anxiety. I am very sorry to hear your story. It is not right. I hope you can get some justice at least. I will pray for you. Your post has given many people a lot of important information.

High ANA [2008-04-15]
I had high ANA readings years ago, as high as it goes on the scale apparently (1:1280). Shortly after going through a bunch of tests, I was diagnosed with Hashimotospeckled pattern, whatever that means. My most recent test also said speckled pattern. I had lupus-specific tests that all came back negative!

Thank you, Janie. [2008-03-20]
Wow! I couldnprofessionals, at least the ones that seem to hold a monopoly on their respective practices in my town. I sure hope you have a different doctor now!! I will definitely investigate saline infusions! Thanks for the tip. As I I can also give credit where it's due, and after yesterday, believe me, it's DUE! I had an appointment with National Jewish Medical Center in Denver yesterday. This appointment lasted six hours, but I didn The entire experience moved like a well-oiled machine. They made my local hospital look like a butcher shop. As noted, I HAVE done a lot of research into this (especially pancreatitis), but it In my case, my lung disease is mild. It The doctor yesterday told me that eventually (probably in a few years) my pancreas pain will go away because my pancreas is basically cannibalizing itself. Once it finishes destroying itself, although Idead pancreas, I won I probably will develop diabetes, though. Unless I develop pancreatic cancer (or cancer somewhere else in my GI tract), though, he told me that my lung disease will definitely be the cause of my death. They gave me so much stuff yesterday, including a very nice book (hard-bound, no less), Now That I Have CF. The entire book is devoted to adult-diagnosed cystic fibrosis. National Jewish is THE place to go for this disease. This is their expertise. I had previously felt as if Iwolves and had lost all trust and respect for the medical professionals as a whole. My experience yesterday has restored my faith. They gave me prescriptions for a box (5) of Fentanyl patches, more Vicodin for the pain that isnhospital worthy, more Xanax for the incredible anxiety I have (I awake in the middle of the night, panick stricken, almost every night.) They re-began me on paroxetine at double the dose I had previously been on, feeling it might work better for me. They gave me an Acapella device to use daily that helps to get rid of the mucus. (I was surprised to find that the use of this device, as they directed, is exhausting! Now I understand why patients with cystic fibrosis are so tired as a result of the treatment they need to undergo.) They gave me an entire box of Creon sample bottles (pancreatic enzyme). They gave me samples of Qvar, Pulmicort, and two ProAir HFAs. They advised me to apply for Social Security disability, and I met with the social worker for a very long time. She also wants me to have my CICP (Colorado Indigent Care Program) case re-rated because she feels I'm paying too much now that my income has decreased so much. The only snag is that if I need to be admitted, they admit through a university hospital near them, again almost 80 miles from where I live. As it was, we had to rent a car yesterday to get there, so I don That A few weeks ago when i had a hospital-worthy attack, the two patches previously given to me by the hospital (which I saved) helped very much to get me through the attack. Only drawback is they take a while to get into your system, but once they do, they last for three days. So maybe these new patches will help prevent another hospital admission, as the others did. Iofficially in the CF register, and I've very eagerly agreed to participate in any research projects where they may need my help. I don

I have just read your post and [2008-03-19]
I recently heard something about saline infusions (think I am right about this) being helpful in the treatment of cystic fibrosis. Please do research on this (I would think you would) because as you and I both know, seems like the medical profession really lacks now days in terms of competency. I told 1 physician I went to about a diagnosis and he had the nerve to roll his eyes up towards the ceiling. I told him I did not make the diagnosis, another physician did and I was just relaying. Name it what you want but just wanted some relief from my symptoms. I hope you will keep in touch with this posting and let us know how things go with you. Please do research though because you sure cannot put any confidence in many people.

Thank you. [2008-03-17]
I Do you mind sharing how old she was and if she suffered from this all her life or was diagnosed as an adult? As far as how I was treated, it I wonder, if that test had been negative, if I would have ever notified that my DNA had been collected in the first place. Now I I even wonder if this is done routinely to patients who are uninsured and considered indigent. All I know is that this is becoming an increasingly difficult disease to manage, and even before the DNA testing was performed, I knew I was getting sicker and sicker. I In fact, I have printed out the form but haven't filled it out yet. I'll wait and see what happens at my appointment with the CF Clinic on Wednesday before deciding whether or not to do it. I again thank you very much for your post and hope everyone who reads this will know that adult-diagnosed cystic fibrosis can happen and is happening, from what I I never knew that, and although I obviously have my issues with how this was handled, this is my way, I guess, of shouting it from the rooftop so that others might be informed because I don As they say, knowledge is power.

Adult-diagnosed cystic fibrosis [2008-03-16]
Hello, everyone. I For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult. I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a stomach bug, but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathingand I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came. I was immediately diagnosed with pancreatitis. The only risk factor profile I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital. My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since. Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis. Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn For whatever reason, they finally began to explore the real reason for what they finally conceded was my chronic pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis. Without any prior opportunity to ask questions, without any informed consent and without the words cystic fibrosis ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6. I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my employer-provided health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldndiscriminate. (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.) However, I The root cause may be cystic fibrosis. If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once youofficially diagnosed, you can I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away). From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having. I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this mystery pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt fine and chalked it up to being in bed in the hospital for 11 days. I challenged the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas. I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease. If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more insurance friendly state or find another means of securing insurance). However, I wasn As I said, I never heard the words cystic fibrosis uttered in my presence. (I found the testing laboratoryInformed Consent for DNA Testing form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the informed consent with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.) I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease. I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition. Please deposit this information into your memory bank in case it may someday apply to you or someone you love. CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN (In fact, the original name for cystic fibrosis was cystic fibrosis of the pancreas.)

I am so sorry to hear about this. [2008-03-16]
My husband It is a horrible disease and I feel for you in your situation. What the hospital did to you is awful and I would talk to the higher ups there. Good luck in everything you do.

Prednisone anyone? [2007-12-14]
I have a rare autoimmune condition called lymphocytic hypophysitis diagnosed in 2002. I have had to be on prednisone at varying doses since then. I am currently on 20 mg a day. It is a drug I love to hate. Unfortunately it is the only thing that seems to help with my symptoms, but not I am steroid dependent. Just curious if anyone else on here has had to be on this drug long-term and how they deal with the side effects of it all.

Fibromyalgia and Yoga [2007-11-05]
It I just wasn't able to browse the entire board, but of the random posts I read, they were mostly about pills. My rheumatologist had recommended Yoga stretches because I didn't want the pills. Not only does it help with the pain, it helps with the fatigue, big time, and any sleep disturbances. For me, anyway. Also, I can't recommend Yoga unless a doctor tells you it won't hurt you---other conditions can be exacerbated by it. I bought a book on Hatha Yoga andlearned from that.I don not the person's in the book. No forcing yourself into ANYTHING. You may progress as time goes on, but never force yourself. Anyway, was diagnosed 12 years ago, and have had a lot of success with the Yoga. It has to be done regularly, especially when first starting out, so that you become limber. The more limber, the more relaxed. Again, not without a doc's assurance that you're not hurting yourself.

See, I did not give myself that diagnosis [2007-11-03]
of fibro- I told the first pain clinic a rheumatologist, an M.D., had diagnosed me as that- I can only take their diagnosis, right? I asked my regular physician (one that I am not going back to) about 3-4 weeks ago COULD THIS BE costochondritis??? I went in as workin one Saturday and he came flying in- told me he only had time for 1 problem, which was the most severe - I chose the fibro and then had shingles also so had to turn around and make appointment with dermatologist. I told the first pain clinic make a diagnosis and just treat the pain. I am so sorry I ask could it be or what another physician told me it was- I never made the diagnosis of fibro- knew no one with it and never knew about it before being diagnosed by a licensed M.D. I could take my medical records from 1 place to the other but they have no time to go through those either.

P.S. I've been dealing with pain for over 32 years. [2007-09-29]
It was never diagnosed and I gave up and just live with it after spending mucho bucks on specialists, so you're not the only one. I don't say much since it has become a normal part of my life.

pain treatment sm [2007-09-18]
There is a spray on called Bio Freeze, got it from PT, I don ortho guy said he was a surgeon, take Tylenol and Tylenol PM, fingers are getting deformed and my back feels like someone took a baseball bat to it and it's broken in half. I find microwave heat pads which you can buy at mall or online, contains rice and sometimes scented stuff like lavendar, but brings relief when I lie flat. Understand the pain and its interference with our profession, it's horrible. I even tried a Nada chair which is on line (it is not a chair, just a belt) and pulls your spine forward, hooks over the knees, helps sometimes. Have tried it all, find no compassion from the docs, sometimes it is extremely depressing to feel this way. Take the extra D, calcium, Actonel, no help there!

Where is most of your pain? [2007-09-13]
I had in extremities, arms, legs especially bad. Now I am having, as I said, the severe pain in the ribs. Seems like when going to a physician you can say what is going on- like I told mine ribs and he x-rays the hands?? I have never been diagnosed with arthritis, x-rays do not show, labs don�t either but have appointment with nephrologist this morning (have renal cysts) and going to ask please can he give assistance as to what to do next, can he recommend something, someone. I feel like I am grasping at straws trying to get the help I need.

reply [2007-09-12]
I was diagnosed with rheumatoid arthritis at 33 and fibromyalgia at 37 - I am now 40. I take large doses of Vicodin for pain.

RA [2007-08-30]
Jan, I finally went to the rheumatologist, thinking that because I had been told the tests werenegative in the past that I would be diagnosed with fibromyalgia. I had insisted to my pcp that I needed to go to the rheumatologist and my pcp finally agreed but said that all the tests would come back negative, and after they did to come back and see him and we would look at options regarding psych drugs as it was all in my head and probably depression. GRRRRRRR..... In any event, you can imagine my surprise when the rheumatologist told me I have RA. I couldn I told him that I had always been told it was negative, and he said that probably that was because my sed rate and c-reactive protein levels had always come back normal. Apparently my RA levels were so low that by themselves they didn Guess I won't be needing that psych eval after all.... I would encourage you to see a rheumatologist, just make sure you take copies of all your bloodwork to them so they can do comparisons. You know, being an MT, just how falliable (sp) doctors can be. You know your body better than anyone. If you believe something is wrong, do not stop until you have the answers you need. Good luck. HC