Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 Hi All, Does anyone know of any CATs working with austic children in the Ithaca/Tompkins County area? Thank you! Amy __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Hi Sandi, is right, everyone is different. Welcome to the land of frustration. I have my EN continuously for 6 months now. I have seen my GP, dermatologist, gynecologist, urologist, and yesterday a gastroenterologist. Latest blood tests are my thyroid, liver, and celiac. I am having a colonoscopy in a couple weeks. If nothing shows up here, I think I am at the end of my testing and it will be just idiopathic. Has anybody tried the EPFX biofeedback machine? I did a demo at a trade show, and the operator told me to have my DR check my liver, it is being overworked. I did tell my gastro Dr. and he did order the Liver panel. It will be interesting to see if anything shows up. Hang in there Sandi! My initial outbreak was way worse than it is now. Vicki EN since 03/07. No known cause. ________________________________________________________________________________\ ____ Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hello to All, this past weekend will mark the 1 year anniversary of the beginning of my second bout of EN which progressed into ENM. I still have the discolouration on my lower left leg - front, back and sides. At the moment, none of the nodules are raised however I multiple nodules on the back of my leg when I run my hand along it. The swelling is constant - at work, everyone teases me as slacker cause i kick of my velcro sandals and sit with my legs up at work all day...lol As you can see Sandi - it varies for all of us. My simple advice is to just accept it so that your stress is minimalized - accepting doesn't mean that you want to have it, it is just acknowledging that you have EN ... so once you do this then it is easier to imagine life without it...just remember to drink lots of water and avoid sodium based foods. In a nutshell, try to think good thoughts and keep the negative ones at bay... hope this helps you. en since 2005 enm since 2007 webmaster for the EN website > > Hi Sandi, > > is right, everyone is different. Welcome to > the land of frustration. > > I have my EN continuously for 6 months now. I have > seen my GP, dermatologist, gynecologist, urologist, > and > yesterday a gastroenterologist. Latest blood tests > are my thyroid, liver, and celiac. I am having a > colonoscopy in a couple weeks. If nothing shows up > here, I think I am at the end of my testing and it > will be just idiopathic. > > Has anybody tried the EPFX biofeedback machine? I did > a demo at a trade show, and the operator told me to > have my DR check my liver, it is being overworked. I > did tell my gastro Dr. and he did order the Liver > panel. It will be interesting to see if anything > shows up. > > Hang in there Sandi! My initial outbreak was way > worse than it is now. > > Vicki > EN since 03/07. > No known cause. > > > _____________________________________________________________________ _______________ > Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Hi Sandi, I feel a sense of frustation in your last message. I know this can be frustrating - trust me, i know! Take a deep breathe, relax and know that you are not alone in this. (((((((HUG))))))) Ok, so when you refer to 'punch biopsy' did they use a needle? If so, then they are accurate in saying that a sample of your tissue will be required. Before you agree to the next biopsy - ask them if they are considering panniculitis as a potential diagnosis. If they aren't ask them why. When I was first sent to a dermatologist, they had me scheduled for a needle biopsy however with one quick look the doctor knew that it was a soft tissue disorder and that a piece of my tissue would be required and the needle extraction would give them what they needed. I have had two tissue biopsy's - one in 2003 and one this past February. I had localized freezing and they simply 'opened' my skin, less than 1 cm, and 'scraped/scooped' a small piece of tissue. It didn't hurt. The first time, the doc used a couple of stitches to keep it closed. The second time, no stitches were used. The incision healed within 10 days. Keep in touch and remember we are hear for you. Many blessings, > > Hello,,,but I haven't been diagnosed yet. They are saying they need to see more fat in the biopsies! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 Jen, how did yours go away??? Did you do anything for it or are you just lucky? Re: Re: help! HI Kakki, I am also a member and have Sarcoidosis, which started with EN and thankfully, both have gone away... You mention your liver levels being on the high side. This can happen with Sarcoidosis as well, along with the EN..Make sure you mention this to your doctor and push for a Chest X-ray and your ACE level... Having higher levels in the liver can be common in Sarc. The good thing is that Sarc. usually does not do too much harm to the liver...Just have to keep an eye on the levels.. EN can be a symptom of Sarc. as well... Good Luck!! Jen Curtin Sarc. and EN 2005, (both gone now!!) --- karandkak@... wrote: > Hello Vicki, > > My name is Kakki and I am a brand new member of the > group. I have not had > an official diagnosis of EN but from everything I > have read about the subject, > I am pretty sure that is what I have. I see my > doctor in another couple of > weeks and will broach her with the subject. > > I would be very interested to learn what your liver > panel results are. I > don't remember the exact count for mine, but they > are running on the high side > and my doctor has me tested every 3 months. If > you don't mind sharing this > information with the group, I would really like to > know if your liver is > being overworked. > > Thanks so much, > > Kakki > > > > ************************************** See what's > new at http://www.aol.com > ________________________________________________________________________________\ ____ Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. http://farechase.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 The second time (and the first) were punch biopsies, not needle biopsies. Dr #4 wants to take a bigger piece because he wants to know if it is pannuculitis. Of all the dr's I have seen, he seems the most knowledgeable, so I am staying with him from now on. Re: help! Hi Sandi, I feel a sense of frustation in your last message. I know this can be frustrating - trust me, i know! Take a deep breathe, relax and know that you are not alone in this. (((((((HUG))))))) Ok, so when you refer to 'punch biopsy' did they use a needle? If so, then they are accurate in saying that a sample of your tissue will be required. Before you agree to the next biopsy - ask them if they are considering panniculitis as a potential diagnosis. If they aren't ask them why. When I was first sent to a dermatologist, they had me scheduled for a needle biopsy however with one quick look the doctor knew that it was a soft tissue disorder and that a piece of my tissue would be required and the needle extraction would give them what they needed. I have had two tissue biopsy's - one in 2003 and one this past February. I had localized freezing and they simply 'opened' my skin, less than 1 cm, and 'scraped/scooped' a small piece of tissue. It didn't hurt. The first time, the doc used a couple of stitches to keep it closed. The second time, no stitches were used. The incision healed within 10 days. Keep in touch and remember we are hear for you. Many blessings, > > Hello,,,but I haven't been diagnosed yet. They are saying they need to see more fat in the biopsies! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 Has anyone tried halobetasol propionate ointment .05 %? I put it on at night and wrap my leg with cellophane and it seems to make the lumps flatter. The first night it did itch and hurt a lot but not anymore. Re: help! Hi again Sandi, [truncated by sender] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 Hi Sandi, I'm assuming you have researched the drug: http://www.drugs.com/pdr/halobetasol-propionate.html Love, idio. EN '68 > > Has anyone tried halobetasol propionate ointment .05 %? I put it on at night and wrap my leg with cellophane and it seems to make the lumps flatter. The first night it did itch and hurt a lot but not anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 HI Sandi, My went away on their own after a few months..It took a while for the joint pain to go away... My En was part of Lofgren's (sp?) syndrome, which is a mild case of Sarcoid, which involves EN and bihilar lymphanodpathy. Thanks!! Jen --- Sandi wrote: > Jen, how did yours go away??? Did you do anything > for it or are you just lucky? > > Re: Re: help! > > HI Kakki, > > I am also a member and have Sarcoidosis, which > started > with EN and thankfully, both have gone away... > > You mention your liver levels being on the high > side. > This can happen with Sarcoidosis as well, along with > the EN..Make sure you mention this to your doctor > and > push for a Chest X-ray and your ACE level... > > Having higher levels in the liver can be common in > Sarc. The good thing is that Sarc. usually does not > do too much harm to the liver...Just have to keep an > eye on the levels.. > > EN can be a symptom of Sarc. as well... > > Good Luck!! > > Jen Curtin > Sarc. and EN 2005, (both gone now!!) > --- karandkak@... wrote: > > > Hello Vicki, > > > > My name is Kakki and I am a brand new member of > the > > group. I have not had > > an official diagnosis of EN but from everything I > > have read about the subject, > > I am pretty sure that is what I have. I see my > > doctor in another couple of > > weeks and will broach her with the subject. > > > > I would be very interested to learn what your > liver > > panel results are. I > > don't remember the exact count for mine, but they > > are running on the high side > > and my doctor has me tested every 3 months. If > > you don't mind sharing this > > information with the group, I would really like to > > > know if your liver is > > being overworked. > > > > Thanks so much, > > > > Kakki > > > > > > > > ************************************** See what's > > new at http://www.aol.com > > > > > > > ________________________________________________________________________________\ ____ > Looking for a deal? Find great prices on flights and > hotels with Yahoo! FareChase. > http://farechase.yahoo.com/ > > ________________________________________________________________________________\ ____ Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2007 Report Share Posted October 14, 2007 Jen, Did you have EN only the one time? The reason I ask is that most people with Lofgren's Syndrome only have an EN outbreak once. My doctor thought that I had L.S. until I had 3 consecutive outbreaks of EN. Now they don't have a clue. I have had 4 outbreaks in my life but this is the first time I have had unbearable joint pain that has continued for over 3 months now. I do feel some comfort in this group, knowing that I am not the only one and that others at times are as frustrated as I am. Jayne > > > > > Hello Vicki, > > > > > > My name is Kakki and I am a brand new member of > > the > > > group. I have not had > > > an official diagnosis of EN but from everything I > > > have read about the subject, > > > I am pretty sure that is what I have. I see my > > > doctor in another couple of > > > weeks and will broach her with the subject. > > > > > > I would be very interested to learn what your > > liver > > > panel results are. I > > > don't remember the exact count for mine, but they > > > are running on the high side > > > and my doctor has me tested every 3 months. If > > > you don't mind sharing this > > > information with the group, I would really like to > > > > > know if your liver is > > > being overworked. > > > > > > Thanks so much, > > > > > > Kakki > > > > > > > > > > > > ************************************** See what's > > > new at http://www.aol.com > > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > > Looking for a deal? Find great prices on flights and > > hotels with Yahoo! FareChase. > > http://farechase.yahoo.com/ > > > > > > > > ________________________________________________________________________________\ ____ > Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 HI Jayne, Yes, I only had it once.... Did you have bihilar lymphanodpathy as well? Thanks, Jen --- digitaljayne wrote: > Jen, > Did you have EN only the one time? > The reason I ask is that most people with Lofgren's > Syndrome only have > an EN outbreak once. > My doctor thought that I had L.S. until I had 3 > consecutive outbreaks > of EN. > Now they don't have a clue. > I have had 4 outbreaks in my life but this is the > first time I have > had unbearable joint pain that has continued for > over 3 months now. > I do feel some comfort in this group, knowing that I > am not the only > one and that others at times are as frustrated as I > am. > > Jayne > > > > > > > > > Hello Vicki, > > > > > > > > My name is Kakki and I am a brand new member > of > > > the > > > > group. I have not had > > > > an official diagnosis of EN but from > everything I > > > > have read about the subject, > > > > I am pretty sure that is what I have. I see > my > > > > doctor in another couple of > > > > weeks and will broach her with the subject. > > > > > > > > I would be very interested to learn what your > > > liver > > > > panel results are. I > > > > don't remember the exact count for mine, but > they > > > > are running on the high side > > > > and my doctor has me tested every 3 months. > If > > > > you don't mind sharing this > > > > information with the group, I would really > like to > > > > > > > know if your liver is > > > > being overworked. > > > > > > > > Thanks so much, > > > > > > > > Kakki > > > > > > > > > > > > > > > > ************************************** See > what's > > > > new at http://www.aol.com > > > > > > > > > > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > > > Looking for a deal? Find great prices on flights > and > > > hotels with Yahoo! FareChase. > > > http://farechase.yahoo.com/ > > > > > > > > > > > > > > > ________________________________________________________________________________\ ____ > > Shape Yahoo! in your own image. Join our Network > Research Panel > today! > http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 > > > > > ________________________________________________________________________________\ ____ Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545433 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 Hi , Thanks for the link. I've been using it since Thursday and the bumps are a lot flatter but by the end of the day, my foot and ancle still look like a balloon. It's crazy how much swelling I get! I am anxiously awaiting the results of the latest biopsy and I will go right to the pharmacy to buy the Centrum vitamins. I was in Lake Havasu this past weekend (where I think I got spider bites that triggered the lumps) and talked to a few people who said that they also had an overblown reaction to spider bites and they suggested that I see a Dr. there who has more experience seeing spider bites (as opposed to California doctors). Anyway, I didn't. I had to return to California. Thanks again, Sandi Re: help! Hi Sandi,I'm assuming you have researched the drug:http://www.drugs.com/pdr/halobetasol-propionate.htmlLove,idio. EN '68>> Has anyone tried halobetasol propionate ointment .05 %? I put iton at night and wrap my leg with cellophane and it seems to make thelumps flatter. The first night it did itch and hurt a lot but not anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2007 Report Share Posted October 15, 2007 I too, still have the discoloration on my legs and arms where I had my flare.Most of the lump is gone. I began in 3 or 4/07 and official in 5/07. I tried the pred 60/40/20 but only made it to the 40 before the rage and poor sight made me cave in to doing without. No flare up, but the occasional soreness and tiredness etc...but no bumps. Right now I am very tired. I have been helping to taking care of an Alzheimer's patient, my sister who more or less raised me after my mother passed away. Very stressful situation, to say the least. I am waiting to see if they pop up again in the next few weeks, as they saw it usually happens 3-6 weeks after ? Good luck! DebbieSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 I think mine are finally improving! Today, I had the least swelling in weeks. I did start taking the Centrum A to Z vitamins yesterday. Maybe it's a coincidence but I am going to take those faithfully every day. They say they usually flare up 3 to 6 weeks after??? Please say no! Sandi Re: Re: help! I too, still have the discoloration on my legs and arms where I had my flare.Most of the lump is gone. I began in 3 or 4/07 and official in 5/07. I tried the pred 60/40/20 but only made it to the 40 before the rage and poor sight made me cave in to doing without. No flare up, but the occasional soreness and tiredness etc...but no bumps. Right now I am very tired. I have been helping to taking care of an Alzheimer's patient, my sister who more or less raised me after my mother passed away. Very stressful situation, to say the least. I am waiting to see if they pop up again in the next few weeks, as they saw it usually happens 3-6 weeks after ? Good luck! Debbie See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
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