LindaJoy Posted September 11, 2006 Report Share Posted September 11, 2006 Hi, everyone. I was just to my family doctor today. She's a verywise intern-est, luckily for me. She's referring me to Children'sHospital in Cincinnati for my EE. Luckily again for me, theireosinophilic disorders unit takes adults.Anyway, while there, she and I got to talking about my experiencewith trying to get my EE diagnosed, and she stated some confusions.I wonder if any of you can help? I hope so.I was tested for Churg -Strauss and vasculitis while in the hospitalhere in Lima, and then in Cleveland. I have a lot of the symptoms ofthese diseases, especially with my gastric problems. I had the ANCA bloodtests done, which showed negative for any form of vasculitis andeven some diseases, like lupus. I had a clear chest x-ray, a clearMRI of my brain, normal seds rate, normal CRP, normal everythingblood but my eosinophils, which were 8.1, and IgE level, which was1228. Docs are attributing those to my EE.At CCF, the rheumatologists said I just don't appear like avasculitis patient. They said my rashes would last longer, likedays instead of hours, like I get them. And, I guess I would be alot sicker. I don't really know what they meant by my physicalpresentation doesn't warrant vasculitis, but they said I definitelydon't have it.Yet, when I have flare ups of my EE, my arms and legs hurt and mayeven tingle and feel a little numb. I also experience purple feetwhen they get cold and I dangle them on the floor over the side of abed. The tips of my hands may turn purple, too. Raynaud's doesn'tturn your whole foot blue, like mine does, is what I was told today.I also have some other symptoms of vasculitis, like pain in mymuscles, blurred vision, weight loss (which I know can come fromEE), burning pains, etc.What do you all think? I noticed that many of you have undergonetests for vasculitis. Do you think my work up is good? I've hadnumerous doctors tell me I don't have vasculitis (CSS or any kind),based on presentation and tests, yet I still can't shake it. Am Ibeing obstinate?Oh, I do have fibromyalgia along with my Postural Orthostatic TachycardiaSyndrome, as well.Thanks, everyone.LInda Quote Link to comment Share on other sites More sharing options...
nantynannie Posted September 13, 2006 Report Share Posted September 13, 2006 Hi Linda,Did your doctor test you for (excess) immune complexes in your blood? It can cause a lot of aching pain and is a type of vasculitis. I have it and it took the docs a long time to find it. What is EE?AnnHi, everyone. I was just to my family doctor today. She's a verywise intern-est, luckily for me. She's referring me to Children'sHospital in Cincinnati for my EE. Luckily again for me, theireosinophilic disorders unit takes adults.Anyway, while there, she and I got to talking about my experiencewith trying to get my EE diagnosed, and she stated some confusions.I wonder if any of you can help? I hope so.I was tested for Churg -Strauss and vasculitis while in the hospitalhere in Lima, and then in Cleveland. I have a lot of the symptoms ofthese diseases, especially with my gastric problems. I had the ANCA bloodtests done, which showed negative for any form of vasculitis andeven some diseases, like lupus. I had a clear chest x-ray, a clearMRI of my brain, normal seds rate, normal CRP, normal everythingblood but my eosinophils, which were 8.1, and IgE level, which was1228. Docs are attributing those to my EE.At CCF, the rheumatologists said I just don't appear like avasculitis patient. They said my rashes would last longer, likedays instead of hours, like I get them. And, I guess I would be alot sicker. I don't really know what they meant by my physicalpresentation doesn't warrant vasculitis, but they said I definitelydon't have it.Yet, when I have flare ups of my EE, my arms and legs hurt and mayeven tingle and feel a little numb. I also experience purple feetwhen they get cold and I dangle them on the floor over the side of abed. The tips of my hands may turn purple, too. Raynaud's doesn'tturn your whole foot blue, like mine does, is what I was told today.I also have some other symptoms of vasculitis, like pain in mymuscles, blurred vision, weight loss (which I know can come fromEE), burning pains, etc.What do you all think? I noticed that many of you have undergonetests for vasculitis. Do you think my work up is good? I've hadnumerous doctors tell me I don't have vasculitis (CSS or any kind),based on presentation and tests, yet I still can't shake it. Am Ibeing obstinate?Oh, I do have fibromyalgia along with my Postural Orthostatic TachycardiaSyndrome, as well.Thanks, everyone.LInda Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted September 13, 2006 Author Report Share Posted September 13, 2006 Hi, Ann,Thanks for the reply. I'm not sure, though, if I was tested for excess immune complexes. I don't think so, or if I was, I wasn't told about it.What symptoms do you have with this?EE is eosinophilic esophagitis. I have a lot of eosinophils (white blood cells) in my esophagitis, which cause me to have some gastric problems, like diarrhea, and I have trouble swallowing, along with other stuff.THanks, again.Linda Quote Link to comment Share on other sites More sharing options...
pamyla Posted September 15, 2006 Report Share Posted September 15, 2006 Hi Linda, I apparently have some type of vasculitis, although my primary care doctor did a blood test for it (I'm not sure exactly what test it was) and I came up negative. I was referred on to both a dermatologist and then a rheumatologist, as I had a rash on my inner thighs, which I later learned is called livedo reticularis. My rheumatologist says I exhibit signs of vasculitis and I know she keeps watch over it but I'm really not sure which of my tests led to that conclusion, or if it was simply enough to look at the livedo. I'm being treated for lyme and I believe that is what is causing the vasculitis in my case.As for being "a lot sicker" I'm able to work full time, so that part sounds like bs to me!good luck,Pam Quote Link to comment Share on other sites More sharing options...
nantynannie Posted September 21, 2006 Report Share Posted September 21, 2006 Hi Linda,Sorry it took so long to reply. I get a rash sometimes, but mostly just very painful aching in my legs and sometimes my arms. I guess a build up of immune complexes in the blood can cause the veins and capilaries to become clogged or swell and it causes heat, flushing, and pain. My tests for Lupus and those types of diseases are negative. Hope this helps.Ann Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.