Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Dear Joanna, Sounds like hives to me. I don't know about Masto but Jackie and do and they will be on line in a little while. You are at the right place for help and support. Love Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Dear : I don't know what to think any more with this crazy thing of mine. I've had two skin biopsy both indicated an increase in Mast Cells. The conclusion of the biopsy indicate I have what is called Telangiectasia Macularis eruptiva perstans Supposedly a rare form of Masto. The problem is this........The researches at NIH have told me that it is not Masto b/c Tmep is always associated with Urticaria Pigmentosa and I don't have any UP spots and have not ever had them. So, to say the least I'm very confused here. Furthermore, I have been checked for the tryptase and histamine and both were normal. That is why I'm looking into CU. I guess the most important piece of information for me is if other people on this line have these tiny red to pink pin dots that are flush to the skin and that don't go away. Thanks Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Myra There is no need to get upset. I am simply saying what the doctor's have told me. What NIH is saying is that if the skin is flushed there will be an increase in Mast Cells. I have tried many meds. Antihistamines, antidepressant, norotin ect.....I would also like to add that the people that I know of who where Diagnosed with Tmep also have internal symptoms which I do not. Except for some joint pain. My biggest problem is my skin. It burn constantly and feels like I have pins and needle. Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Myra There is no need to get upset. I am simply saying what the doctor's have told me. What NIH is saying is that if the skin is flushed there will be an increase in Mast Cells. I have tried many meds. Antihistamines, antidepressant, norotin ect.....I would also like to add that the people that I know of who where Diagnosed with Tmep also have internal symptoms which I do not. Except for some joint pain. My biggest problem is my skin. It burn constantly and feels like I have pins and needle. Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Myra There is no need to get upset. I am simply saying what the doctor's have told me. What NIH is saying is that if the skin is flushed there will be an increase in Mast Cells. I have tried many meds. Antihistamines, antidepressant, norotin ect.....I would also like to add that the people that I know of who where Diagnosed with Tmep also have internal symptoms which I do not. Except for some joint pain. My biggest problem is my skin. It burn constantly and feels like I have pins and needle. Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Jackie - You are right there is no test to rule out Masto. Not even a bone marrow. I don't have any other symptom except a little joint pain which comes and goes. I am not taking any meds b/c nothing as helped. I have even tried Gastrocrom with no results. Do people with CU have the burning skin sensations. Not itching........ its more like a burn. Thanks Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna, why do you think you do not have masto but yet you have increased mast cells? Did the doctor say something to make you believe that? How were your biopsies stained? My daughter Alena (now 3) also began with a variety of forms of urticaria and had skin biopsies to rule out masto (which CANNOT be done because any test can RULE IN masto but NONE can RULE OUT masto) anyway the biopsies have to be stained very specifically and most masto biopsies are sadly done without the correct staining which would include finding the already degranulated cells. If you have any concerns you could have a very prominent masto researcher reread your biopsy slides (he will ask for the wax block) and restain them with the proper stain. Another thing is that it not only takes a skilled dr but also a very skilled pathologist and even then it just takes some " knack " . I hope this helps if you need more information don't be afraid to ask. Much Love,~Alena's Mom Mast cells and CU > Hi group > > My name is Joanna. I'm new to the group and am not sure if I have CU. I've > had tremendous burning on the skin and some itching for almost a year now. A > skin biopsy indicated that I have an increase in Mast Cells. Though, I do > not have Urticaria Pigmentosa or Masto. And am now looking into other > possibilities. I would like to describe my symptoms and give a description > of my skin to see if there are others on the line who share the same thing. > Here goes.... I do not have whealing of the skin or giant UC. I have tiny > red to pink pindots which are not raised and do not go away. I've also had > the rash which looked like inflamed raised goose bumps which felt like a > cheese grater. I also have flushing and a mottled appearance to the skin. I > use to get a Puffy face and swollen eye lids. Last but not least my hair is > somewhat oily and falling out along with my eye brows and eye lashes. If > there is someone out there who shares similar symptoms, I'll be gland to hear > from you. > > Thanks a bunch > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna, why do you think you do not have masto but yet you have increased mast cells? Did the doctor say something to make you believe that? How were your biopsies stained? My daughter Alena (now 3) also began with a variety of forms of urticaria and had skin biopsies to rule out masto (which CANNOT be done because any test can RULE IN masto but NONE can RULE OUT masto) anyway the biopsies have to be stained very specifically and most masto biopsies are sadly done without the correct staining which would include finding the already degranulated cells. If you have any concerns you could have a very prominent masto researcher reread your biopsy slides (he will ask for the wax block) and restain them with the proper stain. Another thing is that it not only takes a skilled dr but also a very skilled pathologist and even then it just takes some " knack " . I hope this helps if you need more information don't be afraid to ask. Much Love,~Alena's Mom Mast cells and CU > Hi group > > My name is Joanna. I'm new to the group and am not sure if I have CU. I've > had tremendous burning on the skin and some itching for almost a year now. A > skin biopsy indicated that I have an increase in Mast Cells. Though, I do > not have Urticaria Pigmentosa or Masto. And am now looking into other > possibilities. I would like to describe my symptoms and give a description > of my skin to see if there are others on the line who share the same thing. > Here goes.... I do not have whealing of the skin or giant UC. I have tiny > red to pink pindots which are not raised and do not go away. I've also had > the rash which looked like inflamed raised goose bumps which felt like a > cheese grater. I also have flushing and a mottled appearance to the skin. I > use to get a Puffy face and swollen eye lids. Last but not least my hair is > somewhat oily and falling out along with my eye brows and eye lashes. If > there is someone out there who shares similar symptoms, I'll be gland to hear > from you. > > Thanks a bunch > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna, why do you think you do not have masto but yet you have increased mast cells? Did the doctor say something to make you believe that? How were your biopsies stained? My daughter Alena (now 3) also began with a variety of forms of urticaria and had skin biopsies to rule out masto (which CANNOT be done because any test can RULE IN masto but NONE can RULE OUT masto) anyway the biopsies have to be stained very specifically and most masto biopsies are sadly done without the correct staining which would include finding the already degranulated cells. If you have any concerns you could have a very prominent masto researcher reread your biopsy slides (he will ask for the wax block) and restain them with the proper stain. Another thing is that it not only takes a skilled dr but also a very skilled pathologist and even then it just takes some " knack " . I hope this helps if you need more information don't be afraid to ask. Much Love,~Alena's Mom Mast cells and CU > Hi group > > My name is Joanna. I'm new to the group and am not sure if I have CU. I've > had tremendous burning on the skin and some itching for almost a year now. A > skin biopsy indicated that I have an increase in Mast Cells. Though, I do > not have Urticaria Pigmentosa or Masto. And am now looking into other > possibilities. I would like to describe my symptoms and give a description > of my skin to see if there are others on the line who share the same thing. > Here goes.... I do not have whealing of the skin or giant UC. I have tiny > red to pink pindots which are not raised and do not go away. I've also had > the rash which looked like inflamed raised goose bumps which felt like a > cheese grater. I also have flushing and a mottled appearance to the skin. I > use to get a Puffy face and swollen eye lids. Last but not least my hair is > somewhat oily and falling out along with my eye brows and eye lashes. If > there is someone out there who shares similar symptoms, I'll be gland to hear > from you. > > Thanks a bunch > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna and , I had to jump in here, because if I remember correctly there are some people on the Masto board who have TMEP without UP. And I think that this is a wrong call... if you have TMEP, then you have masto. And I think that the tryptase test that you had, was a beta tyrptase test, which can tell them NOTHING... Besides, like said you can't rule masto out, tests only rule it in. So if you had a beta tyrptase test and a urine histamine test... then you have had the wrong tests. You need the ALPHAPROtyrptase test and the 24 hr. METHYL-histamine test. And the gold standard of tests for masto is a bone marrow biopsy... which you don't mention having had. Sorry I'm all fired up... but NIH doesn't get very high marks with many people involved with the Mastocytosis Society. Hope this helps. Love, Myra > Dear : > > I don't know what to think any more with this crazy thing of mine. I've had > two skin biopsy both indicated an increase in Mast Cells. The conclusion of > the biopsy indicate I have what is called Telangiectasia Macularis eruptiva > perstans Supposedly a rare form of Masto. The problem is this........The > researches at NIH have told me that it is not Masto b/c Tmep is always > associated with Urticaria Pigmentosa and I don't have any UP spots and have > not ever had them. So, to say the least I'm very confused here. > Furthermore, I have been checked for the tryptase and histamine and both were > normal. That is why I'm looking into CU. I guess the most important piece > of information for me is if other people on this line have these tiny red to > pink pin dots that are flush to the skin and that don't go away. > > Thanks > Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna and , I had to jump in here, because if I remember correctly there are some people on the Masto board who have TMEP without UP. And I think that this is a wrong call... if you have TMEP, then you have masto. And I think that the tryptase test that you had, was a beta tyrptase test, which can tell them NOTHING... Besides, like said you can't rule masto out, tests only rule it in. So if you had a beta tyrptase test and a urine histamine test... then you have had the wrong tests. You need the ALPHAPROtyrptase test and the 24 hr. METHYL-histamine test. And the gold standard of tests for masto is a bone marrow biopsy... which you don't mention having had. Sorry I'm all fired up... but NIH doesn't get very high marks with many people involved with the Mastocytosis Society. Hope this helps. Love, Myra > Dear : > > I don't know what to think any more with this crazy thing of mine. I've had > two skin biopsy both indicated an increase in Mast Cells. The conclusion of > the biopsy indicate I have what is called Telangiectasia Macularis eruptiva > perstans Supposedly a rare form of Masto. The problem is this........The > researches at NIH have told me that it is not Masto b/c Tmep is always > associated with Urticaria Pigmentosa and I don't have any UP spots and have > not ever had them. So, to say the least I'm very confused here. > Furthermore, I have been checked for the tryptase and histamine and both were > normal. That is why I'm looking into CU. I guess the most important piece > of information for me is if other people on this line have these tiny red to > pink pin dots that are flush to the skin and that don't go away. > > Thanks > Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hello and welcome, Joanna. Glad you found us, sorry you have to suffer as well. If a skin biopsy showed an increase in mast cells, and you have flushing, how can masto be summarily dismissed? Just because you don't have UP? Or did your doctor know of some sort of test that can definitely rule masto out? No such test exists, and not everyone with masto has UP... Do you have any other symptoms going on besides those described, even if you think they are not related? Have you noticed any 'triggers', anything that makes your symptoms appear or worsen? What meds, if any, have you tried and did they help at all? What all have you been tested for (thyroid levels, vasculitis, ANA, allergy testing, etc.)? Can you take aspirin and/or other NSAIDs? Some people who are sensitive or allergic to aspirin (actually, to salicylates) can react to food that contains salicylates, which includes most (all?) of the plant kingdom... Any possible infections going on, including from dental work? The more you can tell us, hopefully the more we can help you. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hello and welcome, Joanna. Glad you found us, sorry you have to suffer as well. If a skin biopsy showed an increase in mast cells, and you have flushing, how can masto be summarily dismissed? Just because you don't have UP? Or did your doctor know of some sort of test that can definitely rule masto out? No such test exists, and not everyone with masto has UP... Do you have any other symptoms going on besides those described, even if you think they are not related? Have you noticed any 'triggers', anything that makes your symptoms appear or worsen? What meds, if any, have you tried and did they help at all? What all have you been tested for (thyroid levels, vasculitis, ANA, allergy testing, etc.)? Can you take aspirin and/or other NSAIDs? Some people who are sensitive or allergic to aspirin (actually, to salicylates) can react to food that contains salicylates, which includes most (all?) of the plant kingdom... Any possible infections going on, including from dental work? The more you can tell us, hopefully the more we can help you. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hello and welcome, Joanna. Glad you found us, sorry you have to suffer as well. If a skin biopsy showed an increase in mast cells, and you have flushing, how can masto be summarily dismissed? Just because you don't have UP? Or did your doctor know of some sort of test that can definitely rule masto out? No such test exists, and not everyone with masto has UP... Do you have any other symptoms going on besides those described, even if you think they are not related? Have you noticed any 'triggers', anything that makes your symptoms appear or worsen? What meds, if any, have you tried and did they help at all? What all have you been tested for (thyroid levels, vasculitis, ANA, allergy testing, etc.)? Can you take aspirin and/or other NSAIDs? Some people who are sensitive or allergic to aspirin (actually, to salicylates) can react to food that contains salicylates, which includes most (all?) of the plant kingdom... Any possible infections going on, including from dental work? The more you can tell us, hopefully the more we can help you. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna, I am not upset with you... but from I understand about your bumps they have an increased mast cell load, you have joint involvement and you have flushing, all symptoms of mast cell degranulation. However, you say your bumps do not disappear... by definition the bumps of urticaria are transient and do disappear within a 24 hr period... now that doesn't mean that an urticarian will have a time period without bumps, it simply means that a invididual bump will not last longer than 24 hrs... it may be constantly replaced by other bumps. I have been involved with the Masto Society for several years because my daughter was a shocker, her hiving always progressed into anaphylaxis... which can be another symptom of masto.... And from the information I have read... most masto people will tell you that they didn't acquire all the symptoms at once... in fact they came on them rather slowly... So, one of the things to consider at this point is this... you have symptoms which are typical of masto, flushing number one, an increased mast cell load in these bumps which look like TMEP and joint involvement... this might not be the end of the line of symptoms you may acquire... it could take years before gastro- intestinal involvement becomes an issue. Also there are people out there in masto land who have a solitary UP spot which is faint and fawn colored and is not easily found or recognized... 's daughter had a couple of UP spots which went unrecognized... so it is possible for a person to have UP and not know it. My comments are intended to help you, not to upset you or to cause you any grief, and to this end I do hope they do help. Hugs, Myra > Myra > > There is no need to get upset. I am simply saying what the doctor's have > told me. What NIH is saying is that if the skin is flushed there will be an > increase in Mast Cells. I have tried many meds. Antihistamines, > antidepressant, norotin ect.....I would also like to add that the people that > I know of who where Diagnosed with Tmep also have internal symptoms which I > do not. Except for some joint pain. My biggest problem is my skin. It burn > constantly and feels like I have pins and needle. > > Joanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna! I just wanted to jump in here and let you know that I also have burning skin along with itching. My hives come in all sorts of shapes/sizes/colors, they are raised welts/big or small pink/red dots, red circles w/light in the middle etc... When I am not itching, my skin feels has felt like it was " on fire " So far, I have not found my " cause " but working on that one, its strange, it seems like STRESS is one of my biggest flare times, when I am under stress [which has been tons lately] I really get symptoms, I also get my good days and bad days, those are the days where I have no energy/very emotional and feeling flu like with no temp?? Hope this somewhat helps? Y in KY Re: Mast cells and CU > Jackie - > > You are right there is no test to rule out Masto. Not even a bone marrow. I > don't have any other symptom except a little joint pain which comes and goes. > I am not taking any meds b/c nothing as helped. I have even tried > Gastrocrom with no results. Do people with CU have the burning skin > sensations. Not itching........ its more like a burn. > > Thanks > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna! I just wanted to jump in here and let you know that I also have burning skin along with itching. My hives come in all sorts of shapes/sizes/colors, they are raised welts/big or small pink/red dots, red circles w/light in the middle etc... When I am not itching, my skin feels has felt like it was " on fire " So far, I have not found my " cause " but working on that one, its strange, it seems like STRESS is one of my biggest flare times, when I am under stress [which has been tons lately] I really get symptoms, I also get my good days and bad days, those are the days where I have no energy/very emotional and feeling flu like with no temp?? Hope this somewhat helps? Y in KY Re: Mast cells and CU > Jackie - > > You are right there is no test to rule out Masto. Not even a bone marrow. I > don't have any other symptom except a little joint pain which comes and goes. > I am not taking any meds b/c nothing as helped. I have even tried > Gastrocrom with no results. Do people with CU have the burning skin > sensations. Not itching........ its more like a burn. > > Thanks > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna! I just wanted to jump in here and let you know that I also have burning skin along with itching. My hives come in all sorts of shapes/sizes/colors, they are raised welts/big or small pink/red dots, red circles w/light in the middle etc... When I am not itching, my skin feels has felt like it was " on fire " So far, I have not found my " cause " but working on that one, its strange, it seems like STRESS is one of my biggest flare times, when I am under stress [which has been tons lately] I really get symptoms, I also get my good days and bad days, those are the days where I have no energy/very emotional and feeling flu like with no temp?? Hope this somewhat helps? Y in KY Re: Mast cells and CU > Jackie - > > You are right there is no test to rule out Masto. Not even a bone marrow. I > don't have any other symptom except a little joint pain which comes and goes. > I am not taking any meds b/c nothing as helped. I have even tried > Gastrocrom with no results. Do people with CU have the burning skin > sensations. Not itching........ its more like a burn. > > Thanks > Joanna > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribe > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna - I primarily have cold urticaria but sometimes have flushing of my chest as well for no " apparent " reason. I rarely get bumps or lumps, when I flare up it looks and feels like a bad sunburn. After about 5 minutes, the burn turns to itching, which lasts another 5 minutes or so and then it subsides. I never swell up either. I guess I'm lucky in that respect. -Sheryl in NJ --- carpetvct@... wrote: > Jackie - > > You are right there is no test to rule out Masto. > Not even a bone marrow. I > don't have any other symptom except a little joint > pain which comes and goes. > I am not taking any meds b/c nothing as helped. I > have even tried > Gastrocrom with no results. Do people with CU have > the burning skin > sensations. Not itching........ its more like a > burn. > > Thanks > Joanna > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna - I primarily have cold urticaria but sometimes have flushing of my chest as well for no " apparent " reason. I rarely get bumps or lumps, when I flare up it looks and feels like a bad sunburn. After about 5 minutes, the burn turns to itching, which lasts another 5 minutes or so and then it subsides. I never swell up either. I guess I'm lucky in that respect. -Sheryl in NJ --- carpetvct@... wrote: > Jackie - > > You are right there is no test to rule out Masto. > Not even a bone marrow. I > don't have any other symptom except a little joint > pain which comes and goes. > I am not taking any meds b/c nothing as helped. I > have even tried > Gastrocrom with no results. Do people with CU have > the burning skin > sensations. Not itching........ its more like a > burn. > > Thanks > Joanna > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Joanna - I primarily have cold urticaria but sometimes have flushing of my chest as well for no " apparent " reason. I rarely get bumps or lumps, when I flare up it looks and feels like a bad sunburn. After about 5 minutes, the burn turns to itching, which lasts another 5 minutes or so and then it subsides. I never swell up either. I guess I'm lucky in that respect. -Sheryl in NJ --- carpetvct@... wrote: > Jackie - > > You are right there is no test to rule out Masto. > Not even a bone marrow. I > don't have any other symptom except a little joint > pain which comes and goes. > I am not taking any meds b/c nothing as helped. I > have even tried > Gastrocrom with no results. Do people with CU have > the burning skin > sensations. Not itching........ its more like a > burn. > > Thanks > Joanna > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna. I wanted to jump in here as well with my own experience. I have a clinical dx of masto at this point. I was a hiver as a kid, then around the same time as puberty started, the hives stopped. I was fine until 2 years after a hysterectomy due to endometriosis, when I again needed surgery (due to a repeat of the endo). I literally woke up one day with flushing, my stomach was doing all kinds of tricks I didn't know it could do, and the next day I woke up covered in hives BIG TIME. 3 days later I landed in the ER with the first of many episodes of shocking. The gastro stuff settled down, so never made the connection at that time to the hiving. This was 14 years ago, and since then my symptoms have progressed, with more gradually added - have bone pain now, migraine-like headaches, and constant GERD and diarrhea if I don't take gastrocrom and watching my histamine intake. One thing that I noticed is that often I end up with bruises following a nasty hive episode. I assumed all these years that they were self-caused from scratching. Then and Myra pointed out to me that a normal bruise goes through color changes - dark to greenish to yellowish. My bruises don't do that. They start out brown and stay brown, gradually fading over several weeks, months even. I don't get many, they're usually small, and mostly on my legs, and I never dreamed that they could be UP spots. They sure don't look like any of the pictures of UP I've seen online or in any of the med books I have. Now I know better. Also, my brother was just recently found to also have masto - with a positive bone marrow biop. He thought he had leukemia for like the past 10 years, until I convinced him to have that biop looked at again. His symptoms have mainly been mild urticaria and tiredness, with a little flushing here and there. No TMEP, no UP. Everyone is so different, even with the same disease. It all depends on where the mast cells are congregating at the moment, and how well your body can handle its current mast cell load. The doctors may be right, it may not be masto, but it sure sounds like some sort of mast cell activity is to blame. MCAD maybe, or something no one has even put a name to yet. I hope you can find some answers sooner rather than later. No one should have to be left in the dark for years on end, not knowing what is wrong with them, or to wrongly believe they have something when it's something else. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna. I wanted to jump in here as well with my own experience. I have a clinical dx of masto at this point. I was a hiver as a kid, then around the same time as puberty started, the hives stopped. I was fine until 2 years after a hysterectomy due to endometriosis, when I again needed surgery (due to a repeat of the endo). I literally woke up one day with flushing, my stomach was doing all kinds of tricks I didn't know it could do, and the next day I woke up covered in hives BIG TIME. 3 days later I landed in the ER with the first of many episodes of shocking. The gastro stuff settled down, so never made the connection at that time to the hiving. This was 14 years ago, and since then my symptoms have progressed, with more gradually added - have bone pain now, migraine-like headaches, and constant GERD and diarrhea if I don't take gastrocrom and watching my histamine intake. One thing that I noticed is that often I end up with bruises following a nasty hive episode. I assumed all these years that they were self-caused from scratching. Then and Myra pointed out to me that a normal bruise goes through color changes - dark to greenish to yellowish. My bruises don't do that. They start out brown and stay brown, gradually fading over several weeks, months even. I don't get many, they're usually small, and mostly on my legs, and I never dreamed that they could be UP spots. They sure don't look like any of the pictures of UP I've seen online or in any of the med books I have. Now I know better. Also, my brother was just recently found to also have masto - with a positive bone marrow biop. He thought he had leukemia for like the past 10 years, until I convinced him to have that biop looked at again. His symptoms have mainly been mild urticaria and tiredness, with a little flushing here and there. No TMEP, no UP. Everyone is so different, even with the same disease. It all depends on where the mast cells are congregating at the moment, and how well your body can handle its current mast cell load. The doctors may be right, it may not be masto, but it sure sounds like some sort of mast cell activity is to blame. MCAD maybe, or something no one has even put a name to yet. I hope you can find some answers sooner rather than later. No one should have to be left in the dark for years on end, not knowing what is wrong with them, or to wrongly believe they have something when it's something else. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi Joanna. I wanted to jump in here as well with my own experience. I have a clinical dx of masto at this point. I was a hiver as a kid, then around the same time as puberty started, the hives stopped. I was fine until 2 years after a hysterectomy due to endometriosis, when I again needed surgery (due to a repeat of the endo). I literally woke up one day with flushing, my stomach was doing all kinds of tricks I didn't know it could do, and the next day I woke up covered in hives BIG TIME. 3 days later I landed in the ER with the first of many episodes of shocking. The gastro stuff settled down, so never made the connection at that time to the hiving. This was 14 years ago, and since then my symptoms have progressed, with more gradually added - have bone pain now, migraine-like headaches, and constant GERD and diarrhea if I don't take gastrocrom and watching my histamine intake. One thing that I noticed is that often I end up with bruises following a nasty hive episode. I assumed all these years that they were self-caused from scratching. Then and Myra pointed out to me that a normal bruise goes through color changes - dark to greenish to yellowish. My bruises don't do that. They start out brown and stay brown, gradually fading over several weeks, months even. I don't get many, they're usually small, and mostly on my legs, and I never dreamed that they could be UP spots. They sure don't look like any of the pictures of UP I've seen online or in any of the med books I have. Now I know better. Also, my brother was just recently found to also have masto - with a positive bone marrow biop. He thought he had leukemia for like the past 10 years, until I convinced him to have that biop looked at again. His symptoms have mainly been mild urticaria and tiredness, with a little flushing here and there. No TMEP, no UP. Everyone is so different, even with the same disease. It all depends on where the mast cells are congregating at the moment, and how well your body can handle its current mast cell load. The doctors may be right, it may not be masto, but it sure sounds like some sort of mast cell activity is to blame. MCAD maybe, or something no one has even put a name to yet. I hope you can find some answers sooner rather than later. No one should have to be left in the dark for years on end, not knowing what is wrong with them, or to wrongly believe they have something when it's something else. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 My bumps don't go away within 24hours! They usually last about a week, sometimes more or less. It's weird they'll be on 3 toes on one foot and then disappear and be on the other foot. My orthopedic actually though it was bone it was so hard. So if CU is only 24 hour bumps then what would what I have be called? Many of you speak of burning. I have erythromelalgia (EM). It's a severe vaso dilation in the feet hands, and face. many people just have it in the feet OR hands but I have it in all three. You should see them! People ask how I sunburned just my feet -- they are that red. If I have the itchy bumps at the same time as an EM flare then it really feels unbearable. I can't scratch the bumps because it feels as if I'm scratching an open wound. My hot feet alternate with Raynauld's (cold and blue) They never actually look normal. I don't know why I have EM but I do know certain foods trigger an attack. Any food that vasodialates - like sugar, alcohol, etc.... Just food for thought. Debbie In a message dated 02/18/2002 8:22:02 PM Eastern Standard Time, urticaria writes: Subject: Re: Mast cells and CU Joanna, I am not upset with you... but from I understand about your bumps they have an increased mast cell load, you have joint involvement and you have flushing, all symptoms of mast cell degranulation. However, you say your bumps do not disappear... by definition the bumps of urticaria are transient and do disappear within a 24 hr period... now that doesn't mean that an urticarian will have a time period without bumps, it simply means that a invididual bump will not last longer than 24 hrs... it may be constantly replaced by other bumps. Quote Link to comment Share on other sites More sharing options...
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