Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Sheila, Starting in 1999, I was diagnosed by four rheumatologists for the same disease. The first one diagnosed rheumatoid arthritis, the next one diagnosed pseudogout, the next one diagnosed polymyalgia rheumatica, and the final one diagnosed reactive arthritis. The labels given to rheumatic diseases reflect sets of symptoms, or syndromes -- and the symptoms of different rheumatic diseases may overlap. For example, for a disease to be labeled fibromyalgia, it must meet to sets of criteria: a) widespread pain in all four quadrants of their body for a minimum of three months, and there must be pain in at least 11 of the 18 specified tender points. The problem is that you may ache all over for a number of reasons, not just fibromyalgia. A few decades ago, two types of arthritis were recognized: osteoarthritis and rheumatoid arthritis. There are now many more labels, each of which is associated with a preferred treatment. There is a lot of guesswork in treating a rheumatic disease. The real question is not the label of the disease, but whether or not the prescribed treatment works for you. If a specific treatment does not work for you, the rheumatologist may try the recommended treatment for another rheumatic disease. In your case, I would get second and third opinions, as different rheumatologists will have different insights and may guess differently. Sincerely, Harald At 05:47 AM 6/17/2009, you wrote: >Hi everyone; I was wondering if anyone ever had a hard time getting >a diagnosis? I've been sick for 25 yrs. with what seems to be some >sort of auto-immune disease with no diagnosis. Is it possible to >have an un-diagnosed illness that has yet to be diagnosed? Did >anyone ever experience this? Thanks, Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Hi, Sheila: Most of the chronic illnesses are difficult to diagnose. Part of this is the patients' interaction with the health care system. In my own case I just gave up after a couple of years so that it why it took eight years to diagnose me--there is a lot of frustration. Too many of the people with the disease I have (AS) wait 20 year and more for the correct diagnosis--especially women who are told they have fibromyalgia by dismissive physicians; that label sticks with them until there is irrefutable evidence to the contrary--in the form of DAMAGE that should have been prevented by proper treatment. No doctor who cannot properly diagnose these conditions should ever be allowed to attempt to treat them because (again in my own case) they could make them worse or as a minimum the delays might be very bad. Regards, From: browneyes9017 <browneyes9017@...> Subject: rheumatic Hard to diagnose? rheumatic Date: Wednesday, June 17, 2009, 5:47 AM Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Dear and Sheila and everyone, I have been told by various doctors that I have either osteoarthritis or that I have seronegative arthritis or that maybe I have psoriatic arthritis. I was on AP for a while but Minocin stopped working, and I got horrible hyperpigmentation that led Dr. Whitman to take me off Minocin and put me back on doxycyline, which had already stopped working. I went to a regular (non AP) rheumatologist who has suggested that I try Enbrel. I did try MTX, with no results. Now I don't know what to do. My sacroiliac pain is bad, my knees are bad, hands hurt, my elbows are definitely affected, and so is my cervical spine and my now my temporomandibular joints are starting to hurt. Nothing ever shows up in my blood, including HLA B27, and evidently my affected joints look as though they are osteoarthritic. What should I do? I am currently only taking NSAIDS. Should I try the Enbrel? Help! Best, On Jun 17, 2009, at 1:20 PM, Merchant wrote: > > > Hi, Sheila: > > Most of the chronic illnesses are difficult to diagnose. Part of > this is the patients' interaction with the health care system. In > my own case I just gave up after a couple of years so that it why it > took eight years to diagnose me--there is a lot of frustration. > > Too many of the people with the disease I have (AS) wait 20 year and > more for the correct diagnosis--especially women who are told they > have fibromyalgia by dismissive physicians; that label sticks with > them until there is irrefutable evidence to the contrary--in the > form of DAMAGE that should have been prevented by proper treatment. > No doctor who cannot properly diagnose these conditions should ever > be allowed to attempt to treat them because (again in my own case) > they could make them worse or as a minimum the delays might be very > bad. > > Regards, > > > > > From: browneyes9017 <browneyes9017@...> > Subject: rheumatic Hard to diagnose? > rheumatic > Date: Wednesday, June 17, 2009, 5:47 AM > > Hi everyone; I was wondering if anyone ever had a hard time getting > a diagnosis? I've been sick for 25 yrs. with what seems to be some > sort of auto-immune disease with no diagnosis.Is it possible to have > an un-diagnosed illness that has yet to be diagnosed? Did anyone > ever experience this? Thanks,Sheila > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 , ask you doctor to put you on Biaxin. I had the pain in the lower back and it sure helped. I use it three times a week now. On the beginning I took it every day, but now I just use it three times and it keeps the inflammation away in the sciatic nerve area.  Eva  I found this:  Doctors stumble on infection clue to sciatica cure By Lorraine Fraser, Medical Correspondent Last Updated: 11:54PM BST 14 Jul 2001 DOCTORS believe that half of all cases of the excruciating back pain known as sciatica could be caused by an infection which is easily cured by antibiotics. Specialists in Birmingham have found slow-growing bacteria of the kind that normally lives on the surface of the skin in spinal tissue from nearly 50 per cent of patients with sciatica. Related Articles 　 The finding suggests that a course of antibiotics could be all that is needed to solve the problem for millions of sufferers, revolutionising the way that doctors treat back pain. A clinical trial involving hundreds of patients is being set up to test the hypothesis and the results should be known in 18 months' time. The NHS spends ££500 million a year on investigations and therapy for patients with back pain, which is one of the most difficult complaints to treat. The cost to industry in terms of lost working time is an estimated ££4 billion annually and the potential savings, should the doctors be proved right, would be enormous. Tom Elliott, the professor of clinical microbiology at the University Hospital in Edgbaston, told The Telegraph that the finding of infection in patients with sciatica was " very exciting " . He said: " In terms of future therapy it may mean we could treat this with antibiotics. It could have a tremendous impact in terms of the management of patients with back pain and that has large implications for the NHS as a whole. " Sixteen million people suffer at least one bout of back pain in the UK in any one year and sciatica - pain in the sciatic nerve which extends down the leg from the base of the spinal cord - is one of the most common symptoms. It has traditionally been explained as pressure on the sciatic nerve from a bulging or " slipped " vertebral disc. However, until now there has been no explanation for the inflammation which is frequently present. Professor Elliot and four colleagues from Aston University and the Royal Orthopaedic Hospital in Birmingham stumbled across the answer when trying out a blood test for deep-seated infections in patients, intended to identify infections of the heart or bone. They applied the test to sciatica sufferers as a " control " group expecting negative results in these individuals - only to find that in a third of them it was positive. They have examined disc tissue from 180 patients with sciatica so severe that they needed surgery and found bacterial infection in 46 per cent of them. The most frequently occurring microbe was Proprionibacterium acnes, a normal skin bacterium linked to acne. Professor Elliot said: " We think the organisms are getting into the blood and settling in this part of the body, perhaps in already damaged discs, setting up a low-grade infection. " The theory would explain why some people have slipped discs but do not have sciatic pain. The bacteria concerned are all sensitive to common antibiotics. Tests are under way to see if it is possible to get sufficient drug into the infected discs to kill the bacteria. Professor Elliot said: " We suspect that short courses of antibiotics won't work and sciatica patients may need six weeks of antibiotics, as is the case for example in bone infection. " In future it might also be possible to use the blood test to spot those who might benefit from antibiotic treatment, he added. A spokesman for the charity BackCare, which helped to fund the research, said: " This is extremely interesting work and we will be very excited to see the results of the clinical trial, but we must wait and see. " 　 http://www.telegraph.co.uk/news/uknews/1334054/Doctors-stumble-on-infection-clue\ -to-sciatica-cure.html 　 UK News Get feed updates News Get feed updates External Links Can you catch a bad back? [10 Jul '01] - Aston University Royal Orthopaedic Hospital, Birmingham - Specialist info University Hospital, Birmingham Spine-health.com 　 　 　 　 More on UK News > > From: browneyes9017 <browneyes9017> > Subject: rheumatic Hard to diagnose? > rheumatic@grou ps.com > Date: Wednesday, June 17, 2009, 5:47 AM > > Hi everyone; I was wondering if anyone ever had a hard time getting > a diagnosis? I've been sick for 25 yrs. with what seems to be some > sort of auto-immune disease with no diagnosis.Is it possible to have > an un-diagnosed illness that has yet to be diagnosed? Did anyone > ever experience this? Thanks,Sheila > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Hi, : Seronegative with characteristic joint pain--and especially knee involvement--usually does indicate either PsA or a Reactive Arthritis of some kind and origin. Taking NSAIDs will only make these worse because they increase intestinal permeability, allowing more germs to cross this barrier and incite your immune system even more, even creating new conditions of " polyarthritis " layered on top of the original problem. B27 is not the only antigen associated with AS, and it sounds like you could have this or something very similar as previously mentioned--even Crohn's but you did not mention any bowel issues. If your pains are symmetrical, you probably do not have AS but instead an ReA or PsA and since certain antibiotics " stopped working " (which implies they used to work) it is possible that you have developed resistive colonies to whichever provocative pathogen is causing your disease--and the other side of the coin is candidiasis, which worsens after taking steroids (including birth control--the main reason more women get this than men) and antibiotics. I would do the spittle test and treat for candidiasis. The book by Zampieron, et al (Arthritis: An Alternative Medicine Definitive Guide) has many great suggestions. Whatever you have certainly begins in the intestinal tract and cleansings, fasting, monodiets, etc can really help very much, but it may be time to bring on the big guns of more powerful antibiotics and good anti-fungal drugs, too. You can get yourself better, but it take patience, willpower, and persistent hard work, HEALTH, > > From: browneyes9017 <browneyes9017> > Subject: rheumatic Hard to diagnose? > rheumatic@grou ps.com > Date: Wednesday, June 17, 2009, 5:47 AM > > Hi everyone; I was wondering if anyone ever had a hard time getting > a diagnosis? I've been sick for 25 yrs. with what seems to be some > sort of auto-immune disease with no diagnosis.Is it possible to have > an un-diagnosed illness that has yet to be diagnosed? Did anyone > ever experience this? Thanks,Sheila > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Eva, what is the blood test used in determining the infection? is it a blood culture? how do you know what is the best antibiotic to treat that infection? thank you, EMAILING FOR THE GREATER GOOD Join me rheumatic From: holloway-eva@... Date: Wed, 17 Jun 2009 11:11:19 -0700 Subject: Re: rheumatic Hard to diagnose? , ask you doctor to put you on Biaxin. I had the pain in the lower back and it sure helped. I use it three times a week now. On the beginning I took it every day, but now I just use it three times and it keeps the inflammation away in the sciatic nerve area. Eva I found this: Doctors stumble on infection clue to sciatica cure By Lorraine Fraser, Medical Correspondent Last Updated: 11:54PM BST 14 Jul 2001 DOCTORS believe that half of all cases of the excruciating back pain known as sciatica could be caused by an infection which is easily cured by antibiotics. Specialists in Birmingham have found slow-growing bacteria of the kind that normally lives on the surface of the skin in spinal tissue from nearly 50 per cent of patients with sciatica. Related Articles 　 The finding suggests that a course of antibiotics could be all that is needed to solve the problem for millions of sufferers, revolutionising the way that doctors treat back pain. A clinical trial involving hundreds of patients is being set up to test the hypothesis and the results should be known in 18 months' time. The NHS spends ££500 million a year on investigations and therapy for patients with back pain, which is one of the most difficult complaints to treat. The cost to industry in terms of lost working time is an estimated ££4 billion annually and the potential savings, should the doctors be proved right, would be enormous. Tom Elliott, the professor of clinical microbiology at the University Hospital in Edgbaston, told The Telegraph that the finding of infection in patients with sciatica was " very exciting " . He said: " In terms of future therapy it may mean we could treat this with antibiotics. It could have a tremendous impact in terms of the management of patients with back pain and that has large implications for the NHS as a whole. " Sixteen million people suffer at least one bout of back pain in the UK in any one year and sciatica - pain in the sciatic nerve which extends down the leg from the base of the spinal cord - is one of the most common symptoms. It has traditionally been explained as pressure on the sciatic nerve from a bulging or " slipped " vertebral disc. However, until now there has been no explanation for the inflammation which is frequently present. Professor Elliot and four colleagues from Aston University and the Royal Orthopaedic Hospital in Birmingham stumbled across the answer when trying out a blood test for deep-seated infections in patients, intended to identify infections of the heart or bone. They applied the test to sciatica sufferers as a " control " group expecting negative results in these individuals - only to find that in a third of them it was positive. They have examined disc tissue from 180 patients with sciatica so severe that they needed surgery and found bacterial infection in 46 per cent of them. The most frequently occurring microbe was Proprionibacterium acnes, a normal skin bacterium linked to acne. Professor Elliot said: " We think the organisms are getting into the blood and settling in this part of the body, perhaps in already damaged discs, setting up a low-grade infection. " The theory would explain why some people have slipped discs but do not have sciatic pain. The bacteria concerned are all sensitive to common antibiotics. Tests are under way to see if it is possible to get sufficient drug into the infected discs to kill the bacteria. Professor Elliot said: " We suspect that short courses of antibiotics won't work and sciatica patients may need six weeks of antibiotics, as is the case for example in bone infection. " In future it might also be possible to use the blood test to spot those who might benefit from antibiotic treatment, he added. A spokesman for the charity BackCare, which helped to fund the research, said: " This is extremely interesting work and we will be very excited to see the results of the clinical trial, but we must wait and see. " 　 http://www.telegraph.co.uk/news/uknews/1334054/Doctors-stumble-on-infection-clue\ -to-sciatica-cure.html 　 UK News Get feed updates News Get feed updates External Links Can you catch a bad back? [10 Jul '01] - Aston University Royal Orthopaedic Hospital, Birmingham - Specialist info University Hospital, Birmingham Spine-health.com 　 　 　 　 More on UK News > > From: browneyes9017 <browneyes9017> > Subject: rheumatic Hard to diagnose? > rheumatic@grou ps.com > Date: Wednesday, June 17, 2009, 5:47 AM > > Hi everyone; I was wondering if anyone ever had a hard time getting > a diagnosis? I've been sick for 25 yrs. with what seems to be some > sort of auto-immune disease with no diagnosis.Is it possible to have > an un-diagnosed illness that has yet to be diagnosed? Did anyone > ever experience this? Thanks,Sheila > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Hi Sheila, I went from 1986 to 2005 without a diagnosis. Then I got so sick, that I became bedridden, lost 40 lbs. and became so weak that I could not turn the knob to get into the bathroom door by myself. Then I developed Raynaud's, Vitligo and a heavy chest congestion with no cold or flu. Finally I was hospitalized. The diagnosis was Pulmonary Fibrosis, most likely from " an Autoimmune Disorder. It took another year of constant visits to many doctors before a diagnosis of Scleroderma was found. This is four years later and the docs still are testing me for other overlapping diseases. I have improved much on A/P Minocin and will speak to my doc tomorrow about naltrexone. It is not unusual to have overlapping diseases of the immune system along with complications. What are your symptoms? What docs have you seen? Is your disease progressing? What medications have you taken? What tests have you had? You need to start with a good diagnostician doctor. Depending on the area you are from, there are some good choices. Write to the Roadbackfoundation.org. and ask for their list of docs. This site also has a list of docs. Tell them what area you are from and someone will give you names. I know of two. Dr. Franco in California and Dr. Trentham in Boston. Then there is a list of docs who will prescribe Minocin, hopefully in your area. If I were you, I would start with the specialists. Then switch to a local doc who will prescribe Minocin. Minocin is the drug of choice for most immune diseases. You also need to read the book, " The New Arthritis Breakthough " , by Henry Scammell. Good luck and let us know how you make out. The best to you~~~~Dolores & Mike From: browneyes9017 <browneyes9017@...> Subject: rheumatic Hard to diagnose? rheumatic Date: Wednesday, June 17, 2009, 8:47 AM Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Yes, but if you have a positive ANA, the pattern that you have may give you a clue as to what the disease is. I have centromere so it looks like I have/may have CREST. > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Sheila, I didn't see your symptoms but my son is gluten intolerant (very similar to celiac disease which is an auto-immune disease). He struggled for over 6 years before getting diagnosed. The symptoms are varied and some people can have a symptom or none of the classic gastro-intestinal symptoms, and be still reacting to gluten. This is not an allergy. It is an auto-immune disease. In celiac disease, the small intestine is damaged. But with some people, they can be sensitive to gluten but not have damage to the small intestine but have damage to various organs in the body. Research is beginning to show that auto-immune diseases can improve with a gluten-free diet (which is what yo hae to do when you have celiac or gluten sensitivity). The other auto-immune conditions that are linked to celiac disease or gluten sensitivity are: auto-immune Dermatitis Herpetiformis, insulin-dependent Type 1 Diabetes Mellitus, Thyroid Disease – Hashimoto's Thyroiditis, Systemic Lupus Erythematosus, Autoimmune liver diseases. Less Commonly Linked to celiac disease: 's disease, chronic active hepatitis, down syndrome, rheumatoid arthritis, syndrome, syndrome, Sjogren's syndrome, fibromyalgia, alopecia areata, and scleroderma. Symptoms of celiac disease or gluten intolerance can include diarrhea, constipation, bloating, migraine headaches,nausea, weight loss, anemia, chronic fatigue, weakness, joint pain, bone pain, muscle cramps, neurological complaints, depression, weight loss, concentration and memory problems. Just thought I'd pass this info along just in case it may apply to you. Kathy > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2009 Report Share Posted June 17, 2009 Regarding this excessive collagen issue: so many lotions now contain collagen. Are we supposed to avoid these? Do we need to go around reading labels? > > > > Hi everyone; I was wondering if anyone ever had a hard time getting a diagnosis? I've been sick for 25 yrs. with what seems to be some sort of auto-immune disease with no diagnosis.Is it possible to have an un-diagnosed illness that has yet to be diagnosed? Did anyone ever experience this? Thanks,Sheila > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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