Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi a in NY, This is only my opinion of whom to go to, an allergist or dermatologist? I would say an Allergist/Immunologist but if you have a Dermatologist who is good & listens to you & works with you then stay with them because they are hard to find. I have a nice Allergist that I go to but he never once asked me about my teeth or any root canals nor did he ever test me for H Pylori until I requested it. I feel that this group should get together and format a complete list of tests that should be completed when they first start with the Allergist/Dermatologist. I think it was Pat who e-mailed one list. There are so may of us & all can give some imput to complete this list.You have to also be a detetive for your own body. Keep a diary ( it's a big pain in the butt) of what you eat to see if certain foods make the CU worse. I have been doing this since my CU started 18 months ago & found I am not allergic to certain foods but are sensative to them & break out with acute attacks of angioedema or CU. This group is great and post a lot of useful information, thats how I found my bad rootcanaled tooth. This is for Barry (I think) the Critical Care nurse. Barry loosen up, I am also CCU certified. It doesn't make us any different, just more knowledgeable in the medical field. Always listen, theres a lot to be learned from people, especially if you have walked in their shoes. Use your peripheral vision with a broad scope. We hivers come from all walks of life. If you have informative information please share it with us. Before I started with my CU I had a lot of chest, stomach & intestional problems that I never had before. Then the CU started. Who would have believed that this came from a bad tooth? During the past months of Nov-Dec I tried taking Ibuprofen 400mg twice aday I did great & my hives went away & I was not sensative to the previous foods that I had been to. I was eating everything with no problems. Then the Ibuprofen started to give me severe intestional cramping so had to stop it. The CU came back full force. Now I know why the Ibuprofen worked at that time. (my theory anyway) It reduced the inflammation at the root canalled site (cellular level) thus resulting in reducing mast cells from secreting histamine. Now, I feel it would only have worked for a certain period of time anyway because the source of the problem was still there.. Fondly, . P>S> Everyone, I am keeping all the e-mails to help Alena, so keep them coming in. If everyone gave $5.00, it can really add up. Love you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi a in NY, This is only my opinion of whom to go to, an allergist or dermatologist? I would say an Allergist/Immunologist but if you have a Dermatologist who is good & listens to you & works with you then stay with them because they are hard to find. I have a nice Allergist that I go to but he never once asked me about my teeth or any root canals nor did he ever test me for H Pylori until I requested it. I feel that this group should get together and format a complete list of tests that should be completed when they first start with the Allergist/Dermatologist. I think it was Pat who e-mailed one list. There are so may of us & all can give some imput to complete this list.You have to also be a detetive for your own body. Keep a diary ( it's a big pain in the butt) of what you eat to see if certain foods make the CU worse. I have been doing this since my CU started 18 months ago & found I am not allergic to certain foods but are sensative to them & break out with acute attacks of angioedema or CU. This group is great and post a lot of useful information, thats how I found my bad rootcanaled tooth. This is for Barry (I think) the Critical Care nurse. Barry loosen up, I am also CCU certified. It doesn't make us any different, just more knowledgeable in the medical field. Always listen, theres a lot to be learned from people, especially if you have walked in their shoes. Use your peripheral vision with a broad scope. We hivers come from all walks of life. If you have informative information please share it with us. Before I started with my CU I had a lot of chest, stomach & intestional problems that I never had before. Then the CU started. Who would have believed that this came from a bad tooth? During the past months of Nov-Dec I tried taking Ibuprofen 400mg twice aday I did great & my hives went away & I was not sensative to the previous foods that I had been to. I was eating everything with no problems. Then the Ibuprofen started to give me severe intestional cramping so had to stop it. The CU came back full force. Now I know why the Ibuprofen worked at that time. (my theory anyway) It reduced the inflammation at the root canalled site (cellular level) thus resulting in reducing mast cells from secreting histamine. Now, I feel it would only have worked for a certain period of time anyway because the source of the problem was still there.. Fondly, . P>S> Everyone, I am keeping all the e-mails to help Alena, so keep them coming in. If everyone gave $5.00, it can really add up. Love you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi a in NY, This is only my opinion of whom to go to, an allergist or dermatologist? I would say an Allergist/Immunologist but if you have a Dermatologist who is good & listens to you & works with you then stay with them because they are hard to find. I have a nice Allergist that I go to but he never once asked me about my teeth or any root canals nor did he ever test me for H Pylori until I requested it. I feel that this group should get together and format a complete list of tests that should be completed when they first start with the Allergist/Dermatologist. I think it was Pat who e-mailed one list. There are so may of us & all can give some imput to complete this list.You have to also be a detetive for your own body. Keep a diary ( it's a big pain in the butt) of what you eat to see if certain foods make the CU worse. I have been doing this since my CU started 18 months ago & found I am not allergic to certain foods but are sensative to them & break out with acute attacks of angioedema or CU. This group is great and post a lot of useful information, thats how I found my bad rootcanaled tooth. This is for Barry (I think) the Critical Care nurse. Barry loosen up, I am also CCU certified. It doesn't make us any different, just more knowledgeable in the medical field. Always listen, theres a lot to be learned from people, especially if you have walked in their shoes. Use your peripheral vision with a broad scope. We hivers come from all walks of life. If you have informative information please share it with us. Before I started with my CU I had a lot of chest, stomach & intestional problems that I never had before. Then the CU started. Who would have believed that this came from a bad tooth? During the past months of Nov-Dec I tried taking Ibuprofen 400mg twice aday I did great & my hives went away & I was not sensative to the previous foods that I had been to. I was eating everything with no problems. Then the Ibuprofen started to give me severe intestional cramping so had to stop it. The CU came back full force. Now I know why the Ibuprofen worked at that time. (my theory anyway) It reduced the inflammation at the root canalled site (cellular level) thus resulting in reducing mast cells from secreting histamine. Now, I feel it would only have worked for a certain period of time anyway because the source of the problem was still there.. Fondly, . P>S> Everyone, I am keeping all the e-mails to help Alena, so keep them coming in. If everyone gave $5.00, it can really add up. Love you all, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I was referred to the allergist from the dermatologist (husband and wife), and my allergist has been very helpful. But, I guess whatever works. Cara in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I was referred to the allergist from the dermatologist (husband and wife), and my allergist has been very helpful. But, I guess whatever works. Cara in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 I was referred to the allergist from the dermatologist (husband and wife), and my allergist has been very helpful. But, I guess whatever works. Cara in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hey, everyone. I am ready to send $5.00 to $10.00 for Alena if I could get her address. Love, Suzanne >From: kelly5851@... >Reply-To: urticaria >To: urticaria >Subject: Re: Question >Date: Tue, 8 May 2001 09:24:12 EDT > >Hi a in NY, This is only my opinion of whom to go to, an allergist or >dermatologist? I would say an Allergist/Immunologist but if you have a >Dermatologist who is good & listens to you & works with you then stay with >them because they are hard to find. I have a nice Allergist that I go to >but he never once asked me about my teeth or any root canals nor did he >ever >test me for H Pylori until I requested it. I feel that this group should >get together and format a complete list of tests that should be completed >when they first start with the Allergist/Dermatologist. I think it was >Pat >who e-mailed one list. There are so may of us & all can give some imput to >complete this list.You have to also be a detetive for your own body. Keep >a >diary ( it's a big pain in the butt) of what you eat to see if certain >foods >make the CU worse. I have been doing this since my CU started 18 months >ago & > found I am not allergic to certain foods but are sensative to them & >break >out with acute attacks of angioedema or CU. This group is great and post a >lot of useful information, thats how I found my bad rootcanaled tooth. >This is for Barry (I think) the Critical Care nurse. Barry loosen up, I am >also CCU certified. It doesn't make us any different, just more >knowledgeable in the medical field. Always listen, theres a lot to be >learned from people, especially if you have walked in their shoes. Use your >peripheral vision with a broad scope. We hivers come from all walks of >life. >If you have informative information please share it with us. Before I >started with my CU I had a lot of chest, stomach & intestional problems >that >I never had before. Then the CU started. Who would have believed that >this >came from a bad tooth? During the past months of Nov-Dec I tried taking >Ibuprofen 400mg twice aday I did great & my hives went away & I was not >sensative to the previous foods that I had been to. I was eating everything >with no problems. Then the Ibuprofen started to give me severe >intestional >cramping so had to stop it. The CU came back full force. Now I know why >the >Ibuprofen worked at that time. (my theory anyway) It reduced the >inflammation at the root canalled site (cellular level) thus resulting in >reducing mast cells from secreting histamine. Now, I feel it would only >have worked for a certain period of time anyway because the source of the >problem was still there.. Fondly, . P>S> Everyone, I am >keeping all the e-mails to help Alena, so keep them coming in. If everyone >gave $5.00, it can really add up. Love you all, _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Check in with someone else. My allergist was the first one to take my condition seriously. For the prior 11 years, the message from my GP was " live with it " . I went to him after the ER recommended that I see an Allergist! > Hi everyone! > > I have a question. What kind of specialist is mostly recommended to treat CU, > an allergist or a dermatologist. I'm currently seeing a dermatologist who is > wonderful, but I'm reading about medications on this site that she has never > mentioned. I keep getting worst, and feel like I want a second opinion. Would > an allergist be able to help me more, you think? Thanks, a in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Check in with someone else. My allergist was the first one to take my condition seriously. For the prior 11 years, the message from my GP was " live with it " . I went to him after the ER recommended that I see an Allergist! > Hi everyone! > > I have a question. What kind of specialist is mostly recommended to treat CU, > an allergist or a dermatologist. I'm currently seeing a dermatologist who is > wonderful, but I'm reading about medications on this site that she has never > mentioned. I keep getting worst, and feel like I want a second opinion. Would > an allergist be able to help me more, you think? Thanks, a in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Check in with someone else. My allergist was the first one to take my condition seriously. For the prior 11 years, the message from my GP was " live with it " . I went to him after the ER recommended that I see an Allergist! > Hi everyone! > > I have a question. What kind of specialist is mostly recommended to treat CU, > an allergist or a dermatologist. I'm currently seeing a dermatologist who is > wonderful, but I'm reading about medications on this site that she has never > mentioned. I keep getting worst, and feel like I want a second opinion. Would > an allergist be able to help me more, you think? Thanks, a in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 Good luck with the chiro. Let us know what she tells you. Sharon > >Reply-To: urticaria >To: <urticaria > >Subject: question >Date: Fri, 25 May 2001 15:36:17 -0400 > >Has anyone in the group ever been to a chiropractor that practices >kinesology? I took Alena to one (she looked like she was 18 lol) but she >copied all of Alena's medical records and was going to go through them and >see what she could come up with. Thanks~~Alena's Mom _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 Good luck with the chiro. Let us know what she tells you. Sharon > >Reply-To: urticaria >To: <urticaria > >Subject: question >Date: Fri, 25 May 2001 15:36:17 -0400 > >Has anyone in the group ever been to a chiropractor that practices >kinesology? I took Alena to one (she looked like she was 18 lol) but she >copied all of Alena's medical records and was going to go through them and >see what she could come up with. Thanks~~Alena's Mom _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2001 Report Share Posted May 26, 2001 Good luck with the chiro. Let us know what she tells you. Sharon > >Reply-To: urticaria >To: <urticaria > >Subject: question >Date: Fri, 25 May 2001 15:36:17 -0400 > >Has anyone in the group ever been to a chiropractor that practices >kinesology? I took Alena to one (she looked like she was 18 lol) but she >copied all of Alena's medical records and was going to go through them and >see what she could come up with. Thanks~~Alena's Mom _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 I have not suffered miscarriages, but I sure have had a lot of problems in that area after our son was born. I had to have my hysterectomy done in two parts because according to my doctor, I was to young to have problems. I started out with problems in 1979. I ended finishing everything up in 1980. They said I had fibroid tumors. I am now wondering if it wasn't Sarcoidosis. After what I am learning, I am extremely lucky to have him. We are finding out that for some reason pregnancy really kicks the Sarcoidosis into a more active state. I am so sorry that you had such a hard time. Sharon Question Has anyone suffered late miscarriages/stillbirth and sarcoid?I am trying to find answers here....you see in 1986, long before I was dx with Sarc, I lost my first daughter at 26 weeks in the January, then in the Nov of the same year I lost twins at 19 weeks!!I have since had a total hyserectomy...I tell you..when s*** happens in my house it comes by the truckload!!I am begining to wonder if I have been a VERY BAD person in a previous life!!I am not going to feel bitter and twisted today, as It is beautiful outside, cold and crisp, but beautiful!!Take careLove to allAlison x~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Jane, If you are not comfortable with the diagnosis that you're getting from your Rheumi, I'd would ask to be referred to someone else for a second opinion. It is very possible to have more than one auto-immune disease. The fact that you have Lupus and Diabetes Insipidous is not unusual. Remember too that Diabetes is an auto-immune disease, and many times we end up developing diabetes because our MD's use prednisone as a frontline attack for almost all of the ai-diseases. Best wishes, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hey Jane, One thing the Rheumy should do is either a Mri or a simple Ct Scan of your chest see if there is any lymph node involvement and if so they need to biopsy one and see what the biopsy says.. a negative sed rate is not that uncommon for some one with sarc... or he should send you to a pulmonologist and let him do a work up on your lungs.. I myself would push the issue.. and it is possible to have more than one autoimmune disease at a time.. *sighs* but You should push for a definite diagnosis.. Yes pred is the first line drug for all the autoimmune diseases but once they progress you need a definite diagnosis for the proper treatment... Hope this helps, -- Question 9 and 1/2 years ago I was diagnosed with lupus. A few months ago I had a routine chest xray which showed a granuloma, multiple calcified left hilar lymph nodes, and old granulomatous disease. My Rheum ran an ACE and it was normal. I had just been on 40 mg of pred which is 4x my normal daily dose of 10 mg. I also had an ANA done at the time for lupus which was also negative. In the past it had been positive. I also had tests for TB and valley fever which were normal. The Rheum is still going with lupus as my diagnosis although I have not had the butterfly rash or kidney disease. I have had no other antibodies positive. I have had some night sweats and chills for the past 10 years. And I have diabetes insipidus symptoms but only 5-6 days per month. I have neuro symptoms that go away with pred. things like muscle weakness, ataxia, tremors, peripheral neuropathy, myoclonus. The question is should I push the Rheum on my diagnosis or just accept the lupus diagnosis even if I have my doubts? I never thought of sarc until I had the chest xray but something has to be causing the granulomatous disease. Also I have had severe recurrent iritis which may be related or not. I am just surprised that the Rheum thinks she can rule out sarc from one negative ACE especially when I was on so much pred for 5 weeks prior to the test.Jane ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Hey Jane, One thing the Rheumy should do is either a Mri or a simple Ct Scan of your chest see if there is any lymph node involvement and if so they need to biopsy one and see what the biopsy says.. a negative sed rate is not that uncommon for some one with sarc... or he should send you to a pulmonologist and let him do a work up on your lungs.. I myself would push the issue.. and it is possible to have more than one autoimmune disease at a time.. *sighs* but You should push for a definite diagnosis.. Yes pred is the first line drug for all the autoimmune diseases but once they progress you need a definite diagnosis for the proper treatment... Hope this helps, -- Question 9 and 1/2 years ago I was diagnosed with lupus. A few months ago I had a routine chest xray which showed a granuloma, multiple calcified left hilar lymph nodes, and old granulomatous disease. My Rheum ran an ACE and it was normal. I had just been on 40 mg of pred which is 4x my normal daily dose of 10 mg. I also had an ANA done at the time for lupus which was also negative. In the past it had been positive. I also had tests for TB and valley fever which were normal. The Rheum is still going with lupus as my diagnosis although I have not had the butterfly rash or kidney disease. I have had no other antibodies positive. I have had some night sweats and chills for the past 10 years. And I have diabetes insipidus symptoms but only 5-6 days per month. I have neuro symptoms that go away with pred. things like muscle weakness, ataxia, tremors, peripheral neuropathy, myoclonus. The question is should I push the Rheum on my diagnosis or just accept the lupus diagnosis even if I have my doubts? I never thought of sarc until I had the chest xray but something has to be causing the granulomatous disease. Also I have had severe recurrent iritis which may be related or not. I am just surprised that the Rheum thinks she can rule out sarc from one negative ACE especially when I was on so much pred for 5 weeks prior to the test.Jane ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Jane, Recurring Iritis was how I was diagnosed with Sarcoidosis. It started with a couple of granulomas by my left eye and Iritis, Uvitis, Retinitis. My Opthamologist treated with Preforte drops for these past 3 years. My primary care only took xrays, not cat scans, so did not see the granulomas in my lungs. I started having neurological problems, weakness, numbness in both arms and hands, but mostly on the left side. I made an appointment with a sarcoidosis specialist's office in Boston, pulmonary. The doc I am seeing did a cat scan of my lungs and there were the granulomas that my Eye doc couldn't believe I didn't have. He was right, I had them, it just didn't show up on x- rays that my primary took. Because of the Neuro problems she sent me to a Neurologist who did MRI's of my neck and head. Neurosarc was there. I had a lung biopsy to make sure it was sarc before I start on Remicade, the biopsy was consistent with sarc. Make sure your eyes are treated, my opthamologist said without treatment I would go blind. Good Luck, Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2004 Report Share Posted April 4, 2004 Hi Jane, You get granulomatus inflammation when your body is sick. From this inflammation granuloma's form. There are many diseases which are granulomatus and there is even a disease which is just about granulomatus inflammation. Sarcoidosis can also present with only granulomatus inflammation. Plus you don't need an ACE to have sarcoid. Only about 80% of people have a raised ACE with sarcoid. However it is an inflammatory illness so have your ESR and CRP markers checked and see what pops up. It could be just the thing to get your Dr curious to test other things. Usually with lupus you get a very high ANA and a very specific pattern in the blood work that follows that. There would be a reason your doctor diagnosed you. You may want to ask why you were diagnosed with lupus and how? You obviously feel that there is more to it then you are aware, so ask. With Diabetes Insipidus, you get it ALL the time, not just a few days a month. To me, you sound like you are getting it around a hormonal cycle, which makes perfect sense to me as when I'm very sick mine flares up around then too. I could drink an ocean and it wouldn't be enough. However with uncontroled DI, as a side effect of Neurosarcoid, you would be like that 24/7. In my mind, you are not happy with where you are on your path right now, so you need to discuss some issues with your doctor. Sit down and write out what it is you really want to know. What symptoms you are having, when, how they manifest, how they make you feel, keep a symptom diary - all that fun (not) stuf - and talk to your doctor about it. If he doesn't take you seriously it may be time to find one who does. Good luck, Aisha. > 9 and 1/2 years ago I was diagnosed with lupus. A few months ago I had > a routine chest xray which showed a granuloma, multiple calcified left hilar > lymph nodes, and old granulomatous disease. My Rheum ran an ACE and it was > normal. I had just been on 40 mg of pred which is 4x my normal daily dose of 10 > mg. I also had an ANA done at the time for lupus which was also negative. In > the past it had been positive. I also had tests for TB and valley fever which > were normal. > The Rheum is still going with lupus as my diagnosis although I have > not had the butterfly rash or kidney disease. I have had no other antibodies > positive. > I have had some night sweats and chills for the past 10 years. And I > have diabetes insipidus symptoms but only 5-6 days per month. I have neuro > symptoms that go away with pred. things like muscle weakness, ataxia, tremors, > peripheral neuropathy, myoclonus. > The question is should I push the Rheum on my diagnosis or just accept > the lupus diagnosis even if I have my doubts? > I never thought of sarc until I had the chest xray but something has > to be causing the granulomatous disease. Also I have had severe recurrent > iritis which may be related or not. > I am just surprised that the Rheum thinks she can rule out sarc from > one negative ACE especially when I was on so much pred for 5 weeks prior to the > test. > > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Cheryl, I have had 22 bouts of iritis. The first one was at age 20 and I lost 90% of my vision and then the retina detached and I had surgery. At age 36 the iritis came back. I have put over 1,000 drops of Pred Forte in my right eye. My chest xray did show a small granuloma and calcified lymph nodes in the hilar region, which is in the middle of the chest. It was interpreted as old granulomatous disease. I was surprised my new Rheum did not take me seriously. She wanted to know if someone had suggested sarcoidosis. 8% of all iritis is due to sarcoidosis. I haven't had it for 5 years because I take pred 10 mg orally a day. I took MTX for a total of 3 and 1/2 years. I don't think the new Rheum will give me Remicade because it can cause lupus. Fortunately I can see about 20/30 out of my affected eye. The doctors make me think I am nuts for questioning my diagnosis but when I saw the results of my chest xray sarcoidosis was the first thing that I thought of. Why isn't it the first thing they think of? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Cheryl, I have had 22 bouts of iritis. The first one was at age 20 and I lost 90% of my vision and then the retina detached and I had surgery. At age 36 the iritis came back. I have put over 1,000 drops of Pred Forte in my right eye. My chest xray did show a small granuloma and calcified lymph nodes in the hilar region, which is in the middle of the chest. It was interpreted as old granulomatous disease. I was surprised my new Rheum did not take me seriously. She wanted to know if someone had suggested sarcoidosis. 8% of all iritis is due to sarcoidosis. I haven't had it for 5 years because I take pred 10 mg orally a day. I took MTX for a total of 3 and 1/2 years. I don't think the new Rheum will give me Remicade because it can cause lupus. Fortunately I can see about 20/30 out of my affected eye. The doctors make me think I am nuts for questioning my diagnosis but when I saw the results of my chest xray sarcoidosis was the first thing that I thought of. Why isn't it the first thing they think of? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Aisha, Thanks for the info. It is wierd about the DI symptoms that I have. We have an expert on my lupus list and he says it is not consistent with lupus. But I have had these symptoms for 10 years and the excessive urination is only on the days when I am having increased fatigue and pain. I go large amounts every half hour for about 6-8 hours. Maybe it is a drug reaction? Maybe from the prednisone? I hope you are feeling better. I heard you were very sick. My first Rheum who diagnosed the lupus was unfortunately a bozo. My new Rheum is nice but all my labs were normal so she wasn't real impressed with my condition. But then I was on increased pred at the time. My initial SED rate was 36. It would go normal on the MTX. I did take a calcium channel blocker for a while that made me urinate constantly. I couldn't be 10 minutes from a bathroom. I am getting good information from this list even if it isn't what I end up having. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Aisha, Thanks for the info. It is wierd about the DI symptoms that I have. We have an expert on my lupus list and he says it is not consistent with lupus. But I have had these symptoms for 10 years and the excessive urination is only on the days when I am having increased fatigue and pain. I go large amounts every half hour for about 6-8 hours. Maybe it is a drug reaction? Maybe from the prednisone? I hope you are feeling better. I heard you were very sick. My first Rheum who diagnosed the lupus was unfortunately a bozo. My new Rheum is nice but all my labs were normal so she wasn't real impressed with my condition. But then I was on increased pred at the time. My initial SED rate was 36. It would go normal on the MTX. I did take a calcium channel blocker for a while that made me urinate constantly. I couldn't be 10 minutes from a bathroom. I am getting good information from this list even if it isn't what I end up having. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Have any of you post ops had arm reconstruction? If so, how long were you off the computer? Mine is on 09/01/04, I hope Im not off too long !! Huggles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Actually, I asked for breast reduction long before I thought of WLS and my teeny, tiny petitite blond OB/GYN who I thought would not be sympathetic, was totally supportive. Kaiser has some medical criteria, which if you meet you can get referred. I had three of the four items they consider (recurring yeast infections under your breasts, back or neck pain and visible scarring on my shoulders from bra straps). She did tell me she would happily recommend me once I got closer to my goal weight so I'm hoping that is still a possibility.Kay wrote: Hi . . . vette4me81I hope you don't mind my asking a question, as well. Is Kaiser paying for your breast reconstruction reduction? If so, do you know what the criteria is for them to pay for it. Even after losing about 170 pounds (with about another 50 to go), I am a 36 F or FF cup (depending on the bra) and gravity is definitely winning. Having breast reconstruction is on my rather lengthy list of reconstruction work I'd like to have done. I'm sure that Kaiser won't pay for it all, but it sure would be helpful to have them pick up the tab for some of it.Thanks for the info.All the best,Kayin San Leandroopen RNY 12/1/03vette4me81 wrote: I hope you don't mind my asking but is Kasier paying for your arms reconstruction? i really want to have that operation I think all I have to do is wave my arms and take off like a bird with all the extra skin. I have to lose 25 more pounds before Kasier will do the breast reconstruction reduction operation on me Quote Link to comment Share on other sites More sharing options...
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