Guest guest Posted July 25, 2004 Report Posted July 25, 2004 In a message dated 7/25/2004 9:40:42 PM Eastern Daylight Time, pmork@... writes: But, if you have signs beyond the ANA test, I'd get a second opinion! Yeah, I think I should. The problem is finding the time. They diagnosed me with fibromyalgia, the symptoms are a lot alike. I read about a rash that you get with Lupus. I have a strange rash on my face, that gets worse with the heat and it burns a lot also. Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 In a message dated 7/25/2004 9:50:15 PM Eastern Daylight Time, BBsmart2@... writes: Yeah, I think I should. The problem is finding the time. They diagnosed me with fibromyalgia, the symptoms are a lot alike. I read about a rash that you get with Lupus. I have a strange rash on my face, that gets worse with the heat and it burns a lot also. Janet, I have fibromyalgia too and I have a rash on my face that also gets worse with heat etc. The facial rash in my case is rosaeca. You should see a dermatologist. In my case, they feel that over time I will develop lupus but that it is too early to tell at this point. I guess that it happens sometimes that you get diagnosed with fibromyalgia and it develops into lupus. I don't know, I just don't really worry about it much. Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 In a message dated 7/25/2004 10:49:20 PM Eastern Daylight Time, SNAKpackmomma@... writes: I have a rash on my face that also gets worse with heat etc. The facial rash in my case is rosaeca. You should see a dermatologist. I Yeah maybe, my family Dr. said I didn't have eca. But who knows. Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 I don't know what they do after the ANA test. Rebekah's has always been negative. What I heard was that a negative ANA test means negative, but a positive ANA test does not always mean positive. But, if you have signs beyond the ANA test, I'd get a second opinion! Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Can you tell me how they screen for Lupus? I have a positive ANA, and other signs of Lupus, but my DR, not Brittany's, said I don't have Lupus. Quote
Guest guest Posted July 25, 2004 Report Posted July 25, 2004 I don't know what they do after the ANA test. Rebekah's has always been negative. What I heard was that a negative ANA test means negative, but a positive ANA test does not always mean positive. But, if you have signs beyond the ANA test, I'd get a second opinion! Pam wife to (17 years) mother to , 10, Hannah, 8, Rebekah, 4, and Leah, 3 Can you tell me how they screen for Lupus? I have a positive ANA, and other signs of Lupus, but my DR, not Brittany's, said I don't have Lupus. Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/2004 12:42:32 AM Eastern Daylight Time, BBsmart2@... writes: Yeah maybe, my family Dr. said I didn't have eca. But who knows. So did my family doctor but it can present in different ways at different times in your life and even differently in other people. Men can have their noses swell! And if it isn't treated it can cause permanent damage. I have some red spots from broken capillaries that I'll have forever because it wasn't treated sooner. It's a fairly easy thing to treat too! Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 I have been tested for lupus, but it was never positive. The only thing they always come back to is the EBV. I also have rosacea. Any good ideas on how to hydrate a child of 11? I make sure she is drinking water all day, but it is never enough. L. Mom to Ashton CVID & Asthma & Marina Asthma (both lactose intolerant) Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/04 12:28:45 PM Pacific Daylight Time, Nanashmar@... writes: I have been tested for lupus, but it was never positive. Hello Everyone, I just wanted to mention to those of you who have been tested for Lupus, that it can take several (if not many) years for the ANA to become positive. You can have symptoms before this happens. If you're suspicious, see a good Rheumy and keep getting tested. As for hydrating an eleven year old, if she's drinking water all day and not hydrated, I would ask the Ped. This should be enough to hydrate. Are there any headaches or is there dizziness??? When my eleven year old doesn't drink enough water, he gets a bad headache or dizzy. Sandi, Mom to , age 11. Immune deficiency, Tetrology of Fallot, Pulmonary valve transplant, Mitral valve stenosis, severe allergies, chronic ear, nose and throat infections, asthma and Carnitine deficiency. Suspected Di Syndrome. Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/2004 7:07:00 AM Eastern Daylight Time, SNAKpackmomma@... writes: have some red spots from broken capillaries that I'll have forever because it wasn't treated sooner. It's a fairly easy thing to treat too! OMG, Diane, I have broken capillaries!! Now I am mad!! I bet I have it. My family DR. just gave me some cream and said if this doesn't help you don't have it. Well, it didn't, only the topicort cream helps. I mean just helps, thats it. I bet I have that!!!!! Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/2004 7:07:00 AM Eastern Daylight Time, SNAKpackmomma@... writes: It's a fairly easy thing to treat too! Diane, how do you treat it? Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/2004 8:10:27 PM Eastern Daylight Time, BBsmart2@... writes: OMG, Diane, I have broken capillaries!! Now I am mad!! I bet I have it. My family DR. just gave me some cream and said if this doesn't help you don't have it. Well, it didn't, only the topicort cream helps. I mean just helps, thats it. I bet I have that!!!!! What cream did he give you? metrogel is what I use, but if you have a bad flare up you need to be on tetracycline and you also need to shampoo your hair with nitrozal shampoo (perscription) since your scalp can be affected as well as your face. You also need to always use sunscreen. And foods can make it worse. For me chocolate and garlic will make it worse (damn shame that) but some people spicey food makes it worse. eca is an autoimmune disorder it is not acne. And it can take a LONG time of constant use to get it under control. I've heard that there is a new treatment out, but haven't looked into it yet for myself but will when I have my next physical. Janet, I would really go to see a good dermatologist if I were you!!! If left untreated it can cause permanent scarring of your skin and although it is more common in men, it can make your nose misshapen and large! Who wants THAT? LOL! Here is another tip, use antibacterial soap on your face. It really helps. Also, you don't want to use any make up or lotion that has any acids, oils, or witch hazel in it. It will make the redness much worse. Also, if left untreated, heck even treated it happens, the redness can go into your eyes. That can be very serious. You need eye drops for that, prescription ones. That happens to me about once a year or so. I waited years to go to the dermatologist, I honestly thought I was allergic to make ups, soaps, etc. Don't wait like I did!! Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 26, 2004 Report Posted July 26, 2004 In a message dated 7/26/2004 10:43:08 PM Eastern Daylight Time, SNAKpackmomma@... writes: And foods can make it worse. For me chocolate and garlic will make it worse (damn shame that) How about the heat or sweating? I can't stand it then! Embarrassing too! Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 27, 2004 Report Posted July 27, 2004 In a message dated 7/26/2004 8:10:27 PM Eastern Daylight Time, BBsmart2@... writes: OMG, Diane, I have broken capillaries!! Now I am mad!! I bet I have it. My family DR. just gave me some cream and said if this doesn't help you don't have it. Well, it didn't, only the topicort cream helps. I mean just helps, thats it. I bet I have that!!!!! What cream did he give you? metrogel is what I use, but if you have a bad flare up you need to be on tetracycline and you also need to shampoo your hair with nitrozal shampoo (prescription) since your scalp can be affected as well as your face. You also need to always use sunscreen. And foods can make it worse. For me chocolate and garlic will make it worse (damn shame that) but some people spicy food makes it worse. eca is an autoimmune disorder it is not acne. And it can take a LONG time of constant use to get it under control. I've heard that there is a new treatment out, but haven't looked into it yet for myself but will when I have my next physical. Janet, I would really go to see a good dermatologist if I were you!!! If left untreated it can cause permanent scarring of your skin and although it is more common in men, it can make your nose misshapen and large! Who wants THAT? LOL! Here is another tip, use antibacterial soap on your face. It really helps. Also, you don't want to use any make up or lotion that has any acids, oils, or witch hazel in it. It will make the redness much worse. Also, if left untreated, heck even treated it happens, the redness can go into your eyes. That can be very serious. You need eye drops for that, prescription ones. That happens to me about once a year or so. I waited years to go to the dermatologist, I honestly thought I was allergic to make ups, soaps, etc. Don't wait like I did!! Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 27, 2004 Report Posted July 27, 2004 In a message dated 7/27/2004 12:15:35 AM Eastern Daylight Time, BBsmart2@... writes: How about the heat or sweating? I can't stand it then! Embarrassing too! That is classic, Janet. In rosacea articles it mentions keeping your face cool. If you feel yourself flush your supposed to go put cool damp cloths on your face or use a fan or anything to cool your face down. I find that almost impossible since so often it happens when you aren't home. But the proper medications help keep it under control even if you do get hot and sweaty. It is embarrassing, no question about that. There have been times where I'm embarrassed to go somewhere. Makeup doesn't always cover it well, especially during a bad flare up. There is a texture difference to your skin that just makes makeup weird. Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 27, 2004 Report Posted July 27, 2004 Janet, I have a news letter I receive on rosacea. I will post the info on how to receive it when I get home. We are on vacation now. It is terrible when it is acting up. I have people comment on my " bad sunburn " all the time. I wear big hats, sunscreen, avoid spicy food, alcohol, heat,etc..... There is research going on. I didn't know it was considered an autoimmune problem. That is interesting. I use Finacea and take antibiotics. I used to use Metrogel. I know that since I have been under so much stress with Ashton, I have more problems. I also have bad eczema now. L Ashton CVID Asthma dyslexia & Marina Asthma Quote
Guest guest Posted July 27, 2004 Report Posted July 27, 2004 In a message dated 7/27/2004 7:13:15 PM Eastern Daylight Time, Nanashmar@... writes: .. I use Finacea and take antibiotics. I used to use Metrogel. I know that since I have been under so much stress with Ashton, I have more problems. I also have bad eczema now. Do you like the finacea better? I'm considering switching to it and wondered how you like it? Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 28, 2004 Report Posted July 28, 2004 I like it much better. My face is not as red all the time. I had been on the Metrogel a long time. I always had a red face, it just got redder with a flareup. Finacea is different. It seems to work better for me. L. Quote
Guest guest Posted July 28, 2004 Report Posted July 28, 2004 In a message dated 7/27/2004 7:13:18 PM Eastern Daylight Time, Nanashmar@... writes: Janet, I have a news letter I receive on rosacea. I will post the info on how to receive it when I get home. We are on vacation now. It is terrible when it is acting up. I have people comment on my " bad sunburn " all the time. , Thank you, I would appreciate it very much. People think I have a sunburn too. Hope your vacation is going well:) Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 28, 2004 Report Posted July 28, 2004 In a message dated 7/27/2004 9:58:59 AM Eastern Daylight Time, SNAKpackmomma@... writes: In rosacea articles it mentions keeping your face cool. If you feel yourself flush your supposed to go put cool damp cloths on your face or use a fan or anything to cool your face down. I am HOT all the time! I am just a hot person. I sit in front of the fan even in the winter. My face feels like I have a hot iron on it. My eyes are bad also. I know I have this! Janet, mom to Brittany, CVID, age 13 Quote
Guest guest Posted July 28, 2004 Report Posted July 28, 2004 In a message dated 7/28/2004 5:32:05 PM Eastern Daylight Time, BBsmart2@... writes: am HOT all the time! I am just a hot person. I sit in front of the fan even in the winter. My face feels like I have a hot iron on it. My eyes are bad also. I know I have this! Janet, that is the way I am too. My hubby gets mad at me because I've been known to open the windows in teh winter! LOL! Diane, Mom to Takoda, AKA Kody, Di Syndrome, Hypogammaglobulinemia, Seizure Disorder, Asthma, GERD, bowel dysfunction, learning disabled, CAPD, generalized anxiety disorder, and all around really great kid! Also Mom to Arika age 16, Kaila age 13 (asthma), and Sami age 10 (dyslexic). Please visit my website at _www.geocities.com/schmidtzoo/SNAK_ (http://www.geocities.com/schmidtzoo/SNAK) Quote
Guest guest Posted July 29, 2004 Report Posted July 29, 2004 In a message dated 7/28/2004 8:32:40 PM Eastern Daylight Time, SNAKpackmomma@... writes: Janet, that is the way I am too. My hubby gets mad at me because I've been known to open the windows in teh winter! LOL! My hubby wears sweat shirts in the summer. LOL Janet, mom to Brittany, CVID, age 13 Quote
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