Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Welcome Randy I hope they can tell you something soon. But remember this can take years and it can really get to ya at times. But hang in there. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi, Randy, and welcome. If you go to the main Lupies webpage, you will find a list of links at the bottom of the page. Go to them for lots of information on diagnoses, symptoms, treatments, and up to the minute info on research that we have learned about. Our , a Moderator, has put these pages together with information she and the owner have gathered, as well as information that members bring to the group. Very good stuff, and you can read it as you feel up to it. By doing so, you will arm yourself with enough knowledge to be able to talk with the doctors intelligently about your condition, and you will learn that a negative ANA does not mean you do not have Lupus. By the same token, a postive ANA does not necessarily mean you DO. Isn't that special? Also, keep writing to the group, sharing, and asking questions. That is how we cope with this damned disease, and it's familiars. I live in no. California about 50 miles from San Francisco, am the adoptive mom of four, grandmother of two, and was dx'd with Lupus, Rheumatoid Arthritis, Sjogren's, Fibromyalgia, Lyme Disease, and Diabetes between the ages of 30 and 45. Currently, I am being referred to the Univ. of California at San Francisco for further tests because of skin lesions associated with Lupus. Yesterday was one day of many spend in a lab being made into a human pin cushion, so I know what you are currently going through with the testing and waiting for diagnoses (dx's). Keep us posted on what you find out, and keep writing about your worries, share a laugh, or just check in and read what's happening with the other members. Again, welcome. Hugs, MM aka: Mike, one of the Moderators Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi, Randy, and welcome. If you go to the main Lupies webpage, you will find a list of links at the bottom of the page. Go to them for lots of information on diagnoses, symptoms, treatments, and up to the minute info on research that we have learned about. Our , a Moderator, has put these pages together with information she and the owner have gathered, as well as information that members bring to the group. Very good stuff, and you can read it as you feel up to it. By doing so, you will arm yourself with enough knowledge to be able to talk with the doctors intelligently about your condition, and you will learn that a negative ANA does not mean you do not have Lupus. By the same token, a postive ANA does not necessarily mean you DO. Isn't that special? Also, keep writing to the group, sharing, and asking questions. That is how we cope with this damned disease, and it's familiars. I live in no. California about 50 miles from San Francisco, am the adoptive mom of four, grandmother of two, and was dx'd with Lupus, Rheumatoid Arthritis, Sjogren's, Fibromyalgia, Lyme Disease, and Diabetes between the ages of 30 and 45. Currently, I am being referred to the Univ. of California at San Francisco for further tests because of skin lesions associated with Lupus. Yesterday was one day of many spend in a lab being made into a human pin cushion, so I know what you are currently going through with the testing and waiting for diagnoses (dx's). Keep us posted on what you find out, and keep writing about your worries, share a laugh, or just check in and read what's happening with the other members. Again, welcome. Hugs, MM aka: Mike, one of the Moderators Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Hi Randy, I'm new here too. My name's Sharon and I'm 23, living with my fiance. I too have been fighting for a diagnosis, and finally am getting somewhere. It took going into NYC to NYU Medical Center to get anyone to take me seriously, and now I'm in the middle of getting all of my labels. lol So far I have Celiac Sprue, UCTD, and possibly Sjogrens. My ESR and CRP are both elevated, as is my RF, but a normal ANA and all those other antibody tests. That's what made things hard to dx, because these local docs don't diagnose unless proper bloodwork is there. But the symptoms are real too! So I wouldn't take no for an answer unless they would treat the symptoms. THey wouldn't, so off to the city, and now I also found out that I might be having Petit mal seizures on top of it all, and my brain might be atrophying! It's such a shame that we all have to jump through such hoops to get a treatment plan, and most of us have been told we are faking, etc. How horrible to kick the patient down when they are so far down already. So far this group has been a wonderful place, and I hope you find joy here too. -Sharon P > Hi, > > I'm new here. My name is Randy. I am 33 years old, and live just > outside of Toronto, Ontario. I am a father of a 2 1/2 year old, and > married to a wonderful woman named Mandy. > > I was almost diagnosed with lupus at two, but things seemed to clear > up, and so the doctor didn't worry about it. My sister has been > diagnosed with lupus. It started during her pregnancy, the baby > ended up being born premature and dying as a result. > > We are pretty sure the lupus comes down on my father's side, > although there have not been other diagnosed people. THe symptoms > are very prevalent. They are very private about their health in > some ways. > > Boils, rashes, photosensitivity, kidney disease, and arthritis run > in the family. > > The last couple of years have been a real roller coaster. There was > a real victory last year when I found out that I had gluten > Intolerance(celiac disease), and the diet made a big difference in > my life. I was having a lot of problems, and a lot cleared up. I > was diagnosed a few months later with psoriasis as well. > > I really had to fight to get these diagnoses, and hoped that I would > finally have peace from all of the health problems that I have been > having. I got some peace. > > A few months later my hands started locking up, and dropping > things. I run my own computer consulting business, so this made > working difficult. I went through a severe depression, and other > weird stuff started to happen. > > I have had pain for years due to a car accident, but this was > different. It was spreading through my whole body. The doctor told > me that I shouldn't rule out mental illness. I told him to keep > looking. We have fought for quite a while to get him to take me > seriously. I have had other problems for years that they just can't > explain. > > Two years ago they found high liver enzymes, and last year they > found a ferritin of over 600. I went through tests for the usual: > hemochromatosis. Then the doctor was ready to give up. I went back > to the dermatologist who diagnosed me with Psoriatic arthritis. The > doctor up until this point kept telling me to come back when I could > show him some inflammation. WIth this diagnosis in hand, I went > back to the family doctor who finally agreed to refer me to a rheumy. > > Around the same time I was told by the eye doctor that I had totally > damaged tear membranes in both eyes, and that I needed surgery. I'm > still waiting to get in to have the tear ducts blocked. > > I also had to go to the dentist for chronic burning teeth. He could > not explain them. > > Anyways, I saw the rheumy two weeks ago, and they are testing me for > lupus, sjogren's, ankylosing spondylitis, and some other autoimmune > disease that they didn't name. I get the results in March. > > I am on 20 mgs of Bextra a day. > > Anyways, that's me, and where I'm at. > > I have a normal ANA, ESR, and RF. > > Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Have they checked you for celiac lesions on the brain? There is some great info on celiac disease at the celiac forum. I have also got great advice on what to ask the doctor for, and what to tell him. That is how I am at where I am now. http://forums.delphiforums.com/celiac Randy > > Hi, > > > > I'm new here. My name is Randy. I am 33 years old, and live just > > outside of Toronto, Ontario. I am a father of a 2 1/2 year old, and > > married to a wonderful woman named Mandy. > > > > I was almost diagnosed with lupus at two, but things seemed to clear > > up, and so the doctor didn't worry about it. My sister has been > > diagnosed with lupus. It started during her pregnancy, the baby > > ended up being born premature and dying as a result. > > > > We are pretty sure the lupus comes down on my father's side, > > although there have not been other diagnosed people. THe symptoms > > are very prevalent. They are very private about their health in > > some ways. > > > > Boils, rashes, photosensitivity, kidney disease, and arthritis run > > in the family. > > > > The last couple of years have been a real roller coaster. There was > > a real victory last year when I found out that I had gluten > > Intolerance(celiac disease), and the diet made a big difference in > > my life. I was having a lot of problems, and a lot cleared up. I > > was diagnosed a few months later with psoriasis as well. > > > > I really had to fight to get these diagnoses, and hoped that I would > > finally have peace from all of the health problems that I have been > > having. I got some peace. > > > > A few months later my hands started locking up, and dropping > > things. I run my own computer consulting business, so this made > > working difficult. I went through a severe depression, and other > > weird stuff started to happen. > > > > I have had pain for years due to a car accident, but this was > > different. It was spreading through my whole body. The doctor told > > me that I shouldn't rule out mental illness. I told him to keep > > looking. We have fought for quite a while to get him to take me > > seriously. I have had other problems for years that they just can't > > explain. > > > > Two years ago they found high liver enzymes, and last year they > > found a ferritin of over 600. I went through tests for the usual: > > hemochromatosis. Then the doctor was ready to give up. I went back > > to the dermatologist who diagnosed me with Psoriatic arthritis. The > > doctor up until this point kept telling me to come back when I could > > show him some inflammation. WIth this diagnosis in hand, I went > > back to the family doctor who finally agreed to refer me to a rheumy. > > > > Around the same time I was told by the eye doctor that I had totally > > damaged tear membranes in both eyes, and that I needed surgery. I'm > > still waiting to get in to have the tear ducts blocked. > > > > I also had to go to the dentist for chronic burning teeth. He could > > not explain them. > > > > Anyways, I saw the rheumy two weeks ago, and they are testing me for > > lupus, sjogren's, ankylosing spondylitis, and some other autoimmune > > disease that they didn't name. I get the results in March. > > > > I am on 20 mgs of Bextra a day. > > > > Anyways, that's me, and where I'm at. > > > > I have a normal ANA, ESR, and RF. > > > > Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 I've never heard of Celiac lesions. What causes the CS to attack the brain? I had the MRI and CT scan over a year ago, so I didn't have the CS dx yet, but now I do, and they're re-reviewing my MRI at NYU med center, so maybe they'll catch it if they're there. The delphi forums are great! And there are so many lists of GF foods out there, got me through the first couple weeks of my diet. It's nearly impossible to know where to begin such a dietary change, but the forums and sites out there are such a lifesaver! -Sharon P > Have they checked you for celiac lesions on the brain? > > There is some great info on celiac disease at the celiac forum. I > have also got great advice on what to ask the doctor for, and what > to tell him. That is how I am at where I am now. > > http://forums.delphiforums.com/celiac > > Randy <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Here's sp,e info on celiac brain lesions. I haven't done a lot of research on it, but here is some info from at www.celiac.com http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html? p_prodid=114 & p_catid=7 & sid=91hH9H0lE2y2BTD-46103357215.0c Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Here's sp,e info on celiac brain lesions. I haven't done a lot of research on it, but here is some info from at www.celiac.com http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html? p_prodid=114 & p_catid=7 & sid=91hH9H0lE2y2BTD-46103357215.0c Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2003 Report Share Posted February 21, 2003 Thanks Randy, will check it out. -Sharon P > Here's sp,e info on celiac brain lesions. I haven't done a lot of > research on it, but here is some info from at > www.celiac.com > > http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html? > p_prodid=114 & p_catid=7 & sid=91hH9H0lE2y2BTD-46103357215.0c > > Randy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2011 Report Share Posted August 10, 2011 Yes but sometimes my reactions to situations are overreactions. I have to step outside myself and see what I would think if I saw someone acting very angry over something that may seem insignifigant to other people (for example, someone leaves the milk out on the counter and it spoils). I have made huge arguements in the past over something like that and I know its not a really important thing. I may seek some anger managment counseling my employer offers it for free through our benefits program. As for right now I am trying not to let my agitation take over my mind. N Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 <Yes but sometimes my reactions to situations are overreactions. I have to step outside myself and see what I would think if I saw someone acting very angry over something that may seem insignificant to other people (for example, someone leaves the milk out on the counter and it spoils). I have made huge arguments in the past over something like that and I know its not a really important thing.>> ** You're right, but if one is ignoring the other real issues, one will make issues out of things that are insignificant. You said: <<I may seek some anger managment counseling my employer offers it for free through our benefits program. As for right now I am trying not to let my agitation take over my mind.>> ** I'd try digging a little deeper first. I find it very difficult to believe you don't have issues you're not talking about or facing. Would you like to explore it? There are non-drug substances that help people with explosive tempers. You asked for help but in order for the help to be what you really need we need to sort out what is truly going on. If it all is coming out of nowhere, then we need to look at your adrenal system, thyroid, and diet. If not these reasons, we need to find the reasons. This will bring me to the right remedies for you. It's about the root, not the behavior. Regards, Quote Link to comment Share on other sites More sharing options...
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