I am so sorry to hear about this.

I'm glad to hear that.... [2008-08-20]
...you're doing well. We're rooting for you. And don't forget. You don't say anything about help from your PCP or any other provider, but if you need help from them, please do, to help with your taper.

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.

Crippling RA [2008-08-16]
Hi there, I just found this board. I know there was one a few years ago but happy to see that it is back. I have crippling RA and secondary conditions... active, reacitve, daily pain, all of the above. Many deformities which started in about the 8th year of the disease. It is now my 13th year. I finally scheduled an appt for disability on Monday coming. I just did not want to give in but I am not able to keep a job. I am on medical leave from one inhouse joband work at home part-time on another, just wondering when will they tell me I am too unpredictable and cancel the contract.I really hope that doesn I just went through that with the last job. I have been hospitalized 6 times this year. Both hands are crippled with z-deformities, boutonnere I just type around it but obviously much slower thanI need to be for this job and definitely slower than the employer would like me to be. I made the mistake of thinking since this adesk job, then a disabled person should be able to do it. If anyone else is going through the things I have mentioned above, please feel free to talk to me about any of it. I would love to hear from you and just hope we can support each other and/or come up with ways to still stay employed. blessings to all going through the variouspainful conditions. MT in GA RA 13 years andsecondary conditions withsicca symptoms, bone on bone hips, etc.

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!!!

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!)

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.

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.

Thank you for your response..SM [2007-12-17]
I am so happy to hear you were able to be weaned off the prednisone. My physicians have tried me on methotrexate, CellCept, Imuran, etc. in an attempt to help me wean, but my body definitely does not tolerate this class of drugs well at all and I am sicker on them (extreme nausea, vomiting, fatigue). Seems the prednisone is the only thing that helps, and as much as I hate having to take it, I have to be able to function at work, etc, so have just learned to accept it What dosage of methotrexate are you on? I think I was taking12 mg a week. Actually, out of the above drugs, that is probably the one I tolerated the best! However, I did notice the longer I was on it the more fatigue I had, in addition to losing hair in gobs (I don't have much hair to spare!). Have you tried taking folic acid with the methotrexate? I heard it helps with the GI symptoms and mouth ulcers. I tried to take Fosamax, but it would make me pass out. I think it is a very rare side effect, but I couldn't take that drug either. Also, in 2005 I had to be admitted to the hospital due to diplopia caused by the inflammation from the LH in my pituitary gland, received massive doses of IV steroids and developed glaucoma and serous retinopathy. NOT FUN! The glaucoma resolved, but have permanent damange from the serous retinopathy

Hmm, didn't know you were there. [2007-11-05]
This is how the orthopedic docs are at this office, but my mom has always gone there and isn they made up their minds and were too busy to listen to us. Excuse me if you don't feel this example applies to the original post, but I was trying to show the OP she is not alone is having trouble communicating with MDs. They often have preconceived ideas and certain words tick them off. Mary has been treated poorly time and again, and I was trying to help her get the help she needs. If all the MDs except her rheumatologist don't think her diagnosis exists, then she has sort of hit a stone wall as far as treatment. If they don't agree with the diagnosis, then I'd want to hear what their explanation is for the pain. Just because many docs deny a condition exists doesn't mean they are correct. Do you remember a few years ago when all the MDs were denying that H. pylori caused gastric ulcers? It took years before they would treat that bacteria because they had not been told by the traditional researchers that H. pylori was the cause of many peptic ulcers. Doctors can be very stubborn. I was trying to help Mary. What about you?

Good MIL postings wanted, please SM [2007-11-02]
I am so sick and tired of we mothers-in-law being negatively portrayed on TV, in the movies, in magazines and gossip columns! Does anyone here have a good MIL who has helped you in some way? I think the media is making a ton of money by portraying us all as monster-in-law, and would like to hear some true stories of how people are helped by their husband Gosh, we canhis mother, in a derogatory way. When I look back now, she was just jealous that I had a new woman in my life. I should have been more open-minded. I think it's part of the status quo to hate having another woman in your life -= eternal strife? Not always, I hope. Can you think of ONE positive thing to say. Mine would be that my MIL taught me how to drive, albeit because she wanted me to get my kiesta out to work, but at least she taught me a bit of independence.

Another autoimmune disease [2007-08-31]
I have myasthenia gravis, another autoimmune disease. I hear from others with this disease. Aristotle Onnasis had it, and Ann Margret Not too many people know about it. It is very debilitating and having kindred spirits would be great.

Not sure that calcium matters, but [2007-05-24]
with magnesium MDs always say magnesium citrate, but it's harder to find than other kinds, unfortunately. You will hear one salesman on TV saying the calcium has to be the kind from coral reefs, but I understand that is not true - just a sales pitch.

No, the other person following was not killed but the father was [2007-05-06]
and he was the 1 apparently who was confronting, as per my original posting. Living here, you well know there are on the average 2, 3 or 4 killings each and every day. We visted in Florida last year and surprised when not once in a week did we hear on the news of murder after murder. I would definitely in my home let a rude remark just be brushed off.

Misha, no would not want to move [2007-05-06]
because just moved from Atlanta proper in 2004, really live in a smaller town now and really happy. I go to Atlanta for very few things, sold a home there this past year but am very careful about my surroundings and very watchful because I know what happens, a lot, too much. I hear supposedly the crime rate down here, don�t believe that for a second, just too many killings going on- BYW the hubby has an awsome job here and mine could be worked anywhere but not his.