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About americanmike

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  1. Hi Kamlesh-- Didn't you have really bad reflux a while back? I hope that's gotten better. Sorry you're having problems with depression. I hope you're seeing someone qualified to handle this. You know psychological problems many times have physiological causes... so it might not be as easy as "cheering up" or "changing focus" or 'getting more spiritual" although those things can help. Nonetheless I'll put my 2 cents in. By the way this is a great thread!!! I mean each persons psychological perspective is something we sometimes over look. 2 things For me... I originally thought I was dying with ALS when my symptoms started (I really freaked). So I try to keep it all relative. And I just lost a friend who had MS to a fast moving lung cancer (he was gone 4 month's after an xray came back suspicious.) The other thing that keeps me going is modern medicine and progress. There are people who have been cured by stem cell transplant. Each month more and more studies improve treatment and unravel the mystery of the immune system. Whether it's IVIG, genetically engineered antibodies, Mesenchymal cells, T regulatory cells, the list goes on and on. So I stay up beat because I know this condition is temporary, everyday I imagine the day when I'm better. WE WILL GET BETTER!!!! it's just a matter of time.
  2. Hi Jennifer-- I had read that it was usually the case that PF in Scleroderma was less severe than Idiopathic PF. Not a doctor of course, but that's what I came across. Michael In Florida
  3. Thanks Sam!!! I enjoyed my day, completely. I didn't get too many gifts and we didn't do too much. But I had what I call "immunity". No pun intended to the board! When ever my wife called out, or didn't like me leaving my socks around or my newspapers I just said. Honey... it's father's day. And all complaining stopped. Too bad everyday isn't like that. Michael in Florida
  4. I have been reading about Rituximab therapy and trials on Lupus patients and Arthritis patients. It seems really promising, and some people have kept their autoimmune disease in remission for 7 years or more. But not too much on Scleroderma and Rituximab. Perhaps people can mention it to their rheumies and see what they say??? It just seems like it's ignored when it might be really effective and safer than Cytoxan (no doctor here just repeating what I've read in Lupus trials)
  5. Hi Lori Ann-- Welcome to the board. Sorry about the diagnosis. Here's some things that will help you calm down. 1) Like Shelley Said, many many people have non-fatal very slowly advancing disease. Even Diffuse patients. 2) Everything you read about diffuse scleroderma makes it sound worse than it is. At least in terms of prognosis. The latest real data over the past 15 years say anywhere from 65-85% of diffuse patients will be alive at 10 years. Much better than the image of certain death in 3 to 5 years which is the dogma across the internet. Plus... this was 15 years ago, 10 years from now the advances in treatment should put these numbers much much higher. 3) Some people are being cured, and many many people have put their disease into a complete remission lasting 5 years and counting. There is incredible progress being done in the field of immunology and stem cell transplantation. 4) Your symptoms sound like you might have a mild or mixed type form of scleroderma, which has even better prognosis. 5) Many new treatments today are improving people's lives, and saving them. There are many options you will have today that people 10 years ago did not have. 6) This is not a fatal disease anymore. The new treatments, the cures, the complete remissions, the stabilizations, and the progress suggest you will eventually triumph over this disease. Having said all this, of course it's a real bummer. But that fear of doom and death is just a terrible state of mind. It's so important to realize the statistics are in your favor, and that you are not doomed to progressivley get sicker and sicker and then die. That's just not the case anymore. I hope you start to feel better (emotionally) soon and get a treatment plan together that will help you feel physically better. Michael In Florida
  6. Hi Nelly-- I had a dry irritating cough with tightness irritation etc early when everything started for me. I didn't have any heartburn at all. My pulmonologist immediately suspected reflux, I went on the prilosec and within a day or two my lungs felt so much better. Michael in Florida
  7. Hi all-- You might want to consider getting scoped for you esophogas before you decide to skip the Anti-Acid meds. I know you hate meds but damage to the esophogas, lung irritation, etc can be asymptomatic. And the damage is much worse than anything prilosec will do to you. You have a much higher risk of cancer of the Esph. and also losing function of the Esophogas if acid is damaging it. My reflux comes and goes with flares too. If I let up on the Prilosec say... I skip a day and then go down to 1 per day instead of 2. Sure enough it comes back pretty rotten, and then I swear I won't skimp ever again... but I always do. If your scope shows a healthy esophogas perhaps you can continue to avoid this medication. But just make sure you're not getting silent damage. Michael in Florida
  8. Hi Janice--- Welcome to the board. Everyone here is really kind and they understand. And explore the website sclero.org it has more info on scleroderma than anywhere else in the world. I just wanted to tell you this disease is not a terminal incurable disease. It used to be. But now there are many new medicines and treatements that can stabilize, and even cure it. So get top medical attention. Do your research (check out stem cell transplants). And don't start planning your funeral. Many people are on this site have had the disease for 20 years plus and are managing to live their lives. There are stories on this site of people who had stem cell transplants and who improved dramatically and have gotten better. Just wanted you to realize the reputation is worse than the real prognosis today. You can be treated, you can improve, and you can stabilize and lead a productive life. Of course, bad things can happen too. But it's not automatic and the odds are in your favor. Please try not to get too scared. Michael In Florida
  9. Labs and differing test results are really common. In fact, one ANA test I had was 1/640 and 2 weeks later another test said the ANA was negative. Over the past year and a half I've had 7 ANA tests. 3 positive and 4 negative. All the positive tests were done at leading Universities, or private labs. The 4 negative were all done by Quest or Lab Corp. The big labs have recently (within the past few years) made the ANA test a computerized test where a machine reads the blood and results. This used to be a very labor intensive and time consuming blood test. I would'nt be surprised if in trying to make it automated and cheaper it has become less accurate. I mean how can you go from 1/640 to completely negative in 10 days! My completely unsubstantiated theory...I think if you're ill and not a healthy person, go with the higher numbers or "sicker" numbers. It just seems like the tests are more likely to miss the data and register false negatives, than to see things that aren't there and register false positives or inflated positives. But once again, I'm not a doctor. And I've never even read that anywhere. So it's just a wacky theory. Bottom line the labs are pretty awful. Does anyone watch "House." So many times House says, "test it again" or keep trying. It seems like medical tests are known to be really iffy.
  10. Hi Jennifer-- I'm not a doctor so take this with a big caveat. Here's what I've read. Antibodies are proteins in the immune system. They come from Immune cells in the blood and bone marrow. They are targeted towards invaders, germs, and sometimes your own tissue (autoimmunity). The immune system makes many many different kinds of antibodies. Scl-70, ACA, and Anti-Tho are just common ones for Sclero patients. In scleroderma and other autoimmune diseases there are certain patterns doctors have discovered over years of research and observation. Patients who have X antibody usually have Y symptoms. Since scleroderma is so varied a disease... studies have used antibodies so Dr's know what to expect. It's kind of a way to group you and understand you better. Understand where you might be headed and what to expect, and how to treat you. It's not 100% certain or automatic, just a way to say this sometimes happens or many times this happens etc. Nothing is certain. Some patients with Scl-70 have little skin involvement... even though it suggests a tendency towards diffuse skin involvement. Nucleolar refers to a pattern during laboratory testing. It is not an antibody in and of itself. It just describes the way the ANA test is observed. Again certain patterns have been observed. Patients with Nucleolar staining patterns of ANA test tend to have ... xyz. Nothing is certain just tendencies and probabilities. Symptoms and blood tests can give you a good idea of what pattern of scleroderma you have ( I don't mean limited vs. diffuse... More specific info like lungs and heavy skin or mild disease with myositis, etc). I hope this helps a little. Michael in Florida
  11. Hi Barefoot-- Not good enough, True. But these numbers were from the past 10 years. So going forward will yield improvments for sure. plus... it would not be unreasonable to see a cure in the next 10 years. Anyhow, I agree with your point. But at least this is better than many websites and doctors have said. And it gives reason to hope that someday within our reach they might cure it. I think that thought was a fantasy 10 years ago. Hope you're doing well, Michael in Florida
  12. Prognostic markers for systemic sclerosis. The risk of death is directly related to the autoantibody pattern. Other serum markers for organ involvement are under study, although their predictive performance remains to be evaluated. PubMed. Joint Bone Spine. 2006 Jun 2. This article is from the sclero.org website: Antibodies in Scleroderma.
  13. You don't look that stupid!!!! You aren't. I think what's happening to you happens to a lot of people. Doctors don't want to diagnose scleroderma. For years the play book was so grim that it's a diagnosis that could wait. So many stories sound like yours, "No, that's from getting old, that's from showering too much, if you had sclero you'd have..." But today things are changing and their are many good therapy options that you might want to pursue and a diagnosis will help you get that treatment. See another doctor and don't give up. Thank goodness you're smart enough to research yourself. michael in florida
  14. I was very surprised to see the survival numbers at 10 years compared by antibody type and Limited vs. Diffuse as an article on this website, and what was shocking was the limited survival wasn't always better than diffuse. No doctor will tell you that. But that's what the data was. It's posted here on this site and analysed over 2000 cases of scleroderma. Organ involvement can occur in either subset of the disease. And the subsets themselves are "theoretical" distinctions. Some rheumatologists have argued for different criteria for diffuse vs. limited. And other sclero experts have proposed altogether new groupings based on other things besides extensiveness of skin involvement. Still others argue that antibody profile is the important distinction. It's all enough to make your head spin. Some basics...The less skin involvement the better! The less organ involvement the better. The slower the onset the better. The less inflamatory markers at diagnosis the better. Each persons experience is variable and it's hard to estimate prognoses based on just about anything. That's what I know. Not a doctor, but reading everything on this site certainly empowers us ;) Michael In Florida
  15. We have a friend of the family who's son has autism. And I've done some research for them. There is an actual foundation for autism and autoimmunity. Can't remember the name, but you could google it and find it. Autism has lots of physiological symptoms and complications as well as mental. Also there is alot of digestive track inflammation and abnormalities. This type of thing is common in autoimmunity. Autism and the whole immunization controversy is interesting. Everyone blamed the mercury in the injections but the correlation between autoimmunity and immune system activation after getting immunized is interesting, perhaps suspicious. And Finally, there are patients stories and doctors who prescribe immunosuppressants for early stage autism. I've read some miracle stories but don't know that much about it. They seem legit. Very interesting stuff. Just thought I'd pass on my 2 cents. Michael in Florida
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