Discussions By Condition: I cannot get a diagnosis.

Why would a doctor refuse to perform a test?

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: TenseBulla
  • February 17, 2008
  • 01:10 AM

Sorry for the insane length of this post, but it's my first time, and I want to make sure to give a decent overview of my situation before I ask my question. Please bear with me; I would really appreciate some help and/or advice.
(Or, just skip to the last 2 paragraphs.)
Thanks in advance!
-------------------------

Physical Stats:
31-year-old black female, 5'8", 140 lbs.
Allergic to shellfish and mosquito bites.
Currently taking no medications.
I smoke about 8-10 cigarettes a day.

Disease History:
My symptoms are chronic aphthous ulcers in the mouth (and occasionally nostrils and vulva), plus tense, fluid-filled blisters (mostly on hands, but also elbows an toes).
My first symptom was the mouth ulcers. I'd had these on and off, 1 or 2 at a time, usually on the inside of my lip, since I was about 10 years old. They'd be painful, but small (about 3mm max), and they'd clear up in about 7 days. For many years, doctors and dentists said that I was accidentally cutting biting myself. Even at that age, that didn't make sense to me-- the ulcers would often form in places that my teeth couldn't reach (eg: gums, roof of mouth, or under the tongue). And often when I did cut or bite myself accidentally, no ulcer would form.

Around age 19, I noticed the ulcers were getting worse and worse; it would happen more frequently, with larger ulcers in greater numbers, and last longer. By 24, they'd be on every surface of my mouth and tongue; I couldn't eat or speak without pain for 2-3 weeks at a time. This would usually be accompanied by a severe thrush (candida). At this point, I figured I just had chronic canker sores, complicated by opportunistic candida. I tried various home remedies, and started to take L-lysine, iron, acidophillus and B vitamins. I also tried eliminating various foods from my diet, drinking lots of water, and going to bed earlier. (Sleep does seem to help a little bit, and if I stay up late for several days in a row, I'm almost guaranteed to get some new ulcers.)

By age 26, I'd begun to notice occasional single ulcers in my nostrils and vulva as well. The oral attacks would now go on for months, accompanied by fatigue/malaise. The oral ulcers were huge (6mm+) and would often run into each other (confluent). My tongue developed what I can only describe as "ruffled" or "notched" edges-- scarring from the constant ulcers. I happened to be under a lot of stress at the time, so my head doctor (not my main doctor) prescribed Lexapro for depression/anxiety. Despite its strong calming effect (felt like I was half-asleep all the time; couldn't get riled up about anything), I was still getting attacks. At this time, I also began to notice the occasional "empty blister" on the bony area of my palm (palm side of the knuckles). At the time, I thought they were from friction against the steering wheel, and thought nothing of it. But they kept appearing. Soon, multiple blisters were appearing on all areas of my hands, filled with clear-yellowish or bloody fluid (not blood). Sometimes, especially on my palms where the skin is thick, they form well under the skin without raising up-- but I can still see/feel that there's a "void" that's filling with fluid. They're often preceded by a slight deep-seated itch for a day or two before they form, but the blisters themselves do not itch. The skin that borders the blisters remains very stable; the blisters do not spread or enlarge if I press on them. Overall, the way they form and resolve is unusual and (I would think) distinctive-- they are not like regular blisters. I can describe in detail and provide photos of various stages, if that helps.

Since then, the blistering has appeared on my fingers, palms, backs of hands, elbows and the tops of my toes at the joints. (Notice that these are all "bony" areas. Significant?) Ulcers also continue to form in my nostrils and mouth, and occasionally vulva and perineum. The blistering and ulcers occur together-- I haven't been without one or the other in years. On my palms, the skin of the blisters is quite thick, but everywhere else, the blisters are incredibly delicate. At some point, I managed to catch a blister in my nose-- and suddenly realized that all of my oral/nasal/vulvar ulcers were probably starting out as blisters and the two symptoms were actually one (ie: blistering).

Last year I had the worst attack ever, apropos of nothing, while on vacation. First, my entire palms reddened, and had a "tight" sort of "swollen" feeling, and mild itchiness that seemed to originate from deep below the skin (erythema). Within an hour, I could see/feel dozens of tiny bumps well below the surface, and within a couple of days my whole mouth was taken over like never before, all the way into my upper esophagus (scary!). I felt weak and exhausted all the time, with a sort of ache in my large joints (knees, shoulders, hips) that I'd never noticed before. The whole episode took over 4 months to clear up. (And that only lasted 3 weeks before I was hit with another.)

Psychology:
I tend to define the illness in terms of the mouth ulcers, because they are so debilitating (can't eat, speak, laugh, sleep). The other areas are generally less painful, so I consider myself "good" if I have 4 oral ulcers or fewer. However, the hands do hurt, and sometimes I have trouble firmly gripping the steering wheel, or using a doorknob.

The whole thing is incredibly depressing and demoralizing. When I'm having an attack I avoid all humans-- I don't want them seeing the state of my mouth, or wondering what kind of horrible disease I'm going to give them. I've told crazy lies to avoid having to go places, or speak once I get there. I absolutely cannot eat in front of other people, because it is terrible to behold. I've had to communicate via pen and paper for days at a time. Once, I had a dentist throw up his hands and back away like I was radioactive as soon as he saw what was going on inside my mouth. Another time, it was so bad-- so bloody and crusty and painful and interfering with my speech and causing me to drool and whatnot-- that I had to tie a bandanna over my lower face (and suck up all of my courage) just to walk down the street and into a store and deal with the counter man. I think if he'd seen my face, he would've run me out of the store in horror. I felt so pitiful I wanted to die.

Doctor (Mis)diagnoses:
I've been to various doctors, dentists and dermatologists over the years. Canker sores is their favorite initial diagnoses-- but that's not much of a diagnosis. I've also gotten less-than-confident diagnoses of lichen planus and erythema multiforme, and some other things I don't remember that weren't even close. (In a couple of cases, the doctors actually hauled out The Big Book of Dermatological Horrors and flipped through the pages looking for what I've got. How reassuring.)

While I fully understand why they'd be considered at first, none of these diagnoses rings true to me. Either I have symptoms that don't fit, or they call for symptoms that I don't display. Furthermore, none of the treatments that go with these diagnoses have helped a whit. I've had three skin biopsies, all "normal". I was recently referred to a rheumatologist because of the "bone ache" that comes with a bad attack. He ran a truckload of blood and urine tests, none of which even seemed relevant to me-- not that he explained any of them. Turns out I'm allergic to shellfish. (I knew that.)

My Assisted Self-Diagnosis:
In desperation, I sent photos of various stages to a doctor friend of a friend, just asking "what do you think of this." He came back with "looks like pemphigus." I'd never heard of it. (It's an autoimmune disease.) Looked into it very deeply online, and it fits perfectly. Now, I know not to jump to conclusions. But the more research I do, the better it fits. The actual mechanism of pemphigus (too scientific to go into here) exactly matches what I feel in my body. I'm pretty meticulous, so I'd researched lichen planus and erythema multiform too-- they don't fit anywhere near as well. And I've also learned that many of these bullous diseases can look alike, and that pemphigus is a relatively "new" disease that most GPs have never even heard of. So I think it's worth looking into.

Which brings me to my question:
Whenever I bring up pemphigus, the doctors become totally unreceptive; they just shut down and become very curt. They won't even consider it, and they won't say why not. They refuse to test for it. I don't know if they think I have cyber-chondria or what, but I'm obviously not making this up, and they really haven't given me any good reasons to believe their diagnoses-- the treatments haven't helped, and some have major side effects. Furthermore, from what I can tell, there are no tests to conclusively confirm those diagnoses, but apparently there are some tests that can be performed to confirm pemphigus.

So, why would a doctor refuse to perform a non-invasive, non-dangerous test to rule this out and thereby shut me up? How can I be more firm about this-- without "offending" the doctors? (Which I suspect is what's happening.) I'm tired of asking for the test, I want to order it to be done, as it were. Would it help to go in with, say, the Mayo Clinic's writeup of the disease? (Maybe they'd respect that more? Maybe that would educate them in a non-embarassing way?) Is there a certain type of specialist I should look for? Or, can I just go around them and get the tests (ELISA and Wester Blot) done myself?

Any advice or reassurances or morale boosters would be appreciated. Thanks so much for taking the time.

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20 Replies:

  • I'm so sorry you are going through this. It sounds like you've been through the ringer with a very tough undiagnosed illness.It sounds like you have already been to numerous doctors and dermatologists. Do you think you have the strength and/or resources to try another one? I'm wondering if you went to a teaching hospital's dermatology clinic, they may know more and be willing to get to the bottom of this, and hopefully run the necessary tests. It might even help to continue taking pictures of all your lesions and make a photo-album to share with the doctors. Also, ask relatives if they have ever had anything similar.Another idea is perhaps going to the library in a teaching hospital and looking through the dermatology books yourself until you find a match or list of possible things. I think there may even be derm atlases available online...You may even want to get copies of your medical records and list out all possible diagnoses that were ever thought of. Also, keep track of all labs done so far and outline them on one sheet with your values and the normal ranges. Again, I am so sorry you are sick like this and have no answers.Best Wishes. I'll keep you in my thoughts!
    Anonymous 42789 Replies
    • February 18, 2008
    • 11:15 PM
    • 0
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  • Rather than continuing to search for an allopathic answer to your condition, why not consider a more holistic approach to your illness? Find a good NAET practitioner - this may really help you. Also Chinese herbal medicine and acupuncture may make a difference. What is your diet like? What do you eat on a daily basis? What toothpaste do you use? I used to get terrible canker sores and mouth ulcers, and switched my toothpaste to one without sodium lauryl sulfate and it made a HUGE difference...I use one with xylitol only. Please try this and see if your symptoms improve. Several nutritional deficiencies can cause some of your symptoms. Vit C is one - smoking leaches out vit C from the body, so you are very likely deficient. Visit www.1stholistic.com and look at their charts on deficiencies - see if any others fit your symptoms. NAET is Nambudripad Allergy Elimination Techniques. It is an amazing, noninvasive technique to help transform the body and eliminate allergies. It is possible you may have undiagnosed allergies causing this problem...autoimmune disorders often have multiple allergy and food/chemical intolerances. Please research this I really think it would help. Allopathic medicine does not have all the answers. I hope you find help using a more holistic approach. Best wishesDOM
    acuann 3080 Replies
    • February 19, 2008
    • 05:29 AM
    • 0
    Flag this Response
  • I thought of pemphigus also when I read your post. I think your pemphigus is very serious as it is in your esophagus and could travel down to your lungs. As suggested above, go to the nearest teaching hospital and e-mail and call their dermatology department for an appointment. You could have another autoimmune condition, particularly myasthenia gravis, a chronic disorder characterized by muscle weakness and fatigue, or thymoma, a tumor of the thymus. The thymus is an organ that produces white blood cells known as lymphocytes, an important part of your immune system.As you've had this since you were a child, it is a shame you weren't diagnosed earlier. Once you get a definitive diagnosis, and your treatment is starting to make you feel better, consider filing a medical malpractice suit against your doctor. The pain and suffering you've endured is terrible. Take pictures now of your lesions and get a copy of your records from the dermatologists etc as Elke suggested. As you feel so miserable now, I would try any solution to attain some degree of health. From acupuncture to zinc. Get on the the pemphigus boards and see who they consider the best docs. www.pemphigus.org
    rad-skw 1605 Replies
    • February 19, 2008
    • 11:24 AM
    • 0
    Flag this Response
  • So, why would a doctor refuse to perform a non-invasive, non-dangerous test to rule this out and thereby shut me up? How can I be more firm about this-- without "offending" the doctors? (Which I suspect is what's happening.) I'm tired of asking for the test, I want to order it to be done, as it were. Would it help to go in with, say, the Mayo Clinic's writeup of the disease? (Maybe they'd respect that more? Maybe that would educate them in a non-embarassing way?) Is there a certain type of specialist I should look for? Or, can I just go around them and get the tests (ELISA and Wester Blot) done myself? Im discusted in how you have been treated by your doctor. I personally think it's best not even to bother any more with him, as things have been going on far too long and obviously he really isnt interested in actually helping you. It would probably be much better to find another doctor. As another person here said.. If necessary, find a support group for that condition you think you have ..and then ask them for recommendations on doctors you could go and see. But any reaonable doctor should hear you out.. and allow you to have more tests done if a condition seems to fit. What I myself do when i need to educate one of my doctors, is bring in stuff ive copied from online to them. (it's best if it's come from a proper medical site). At times they even ask me if i know where any info is for them to read.. on whatever im talking about.
    taniaaust1 2267 Replies
    • February 19, 2008
    • 02:17 PM
    • 0
    Flag this Response
  • Oh, thank you all so much for your responses!The support alone is priceless.When I made this post, I was 3 weeks into a terrible attack, but I was so depressed, and I didn't really expect a response, that I didn't check back. Now I'm feeling better (shortest outbreak ever!?!), but I'm determined to not let this go. In fact, yesterday I picked up a complete report of all of my lab results from 2001-2007 (most of which they've never bothered to send me, much less discuss with me). They're mostly gibberish to me, but there are at least seven with "abnormal" results (including an insanely high H .pylori antibodies count). I'm sure it's nothing major (?) but I don't think anything should be ignored right now. I'm going to have to make an appointment to have these results explained to me...
    TenseBulla 10 Replies Flag this Response
  • Oh, thank you all so much for your responses!The support alone is priceless.When I made this post, I was 3 weeks into a terrible attack, but I was so depressed, and I didn't really expect a response, that I didn't check back. Now I'm feeling better (shortest outbreak ever!?!), but I'm determined to not let this go. In fact, yesterday I picked up a complete report of all of my lab results from 2001-2007 (most of which they've never bothered to send me, much less discuss with me). They're mostly gibberish to me, but there are at least seven with "abnormal" results, including an insanely high H. pylori antibodies count (bizarre). I'm sure none of it's major (?) but I don't think anything should be ignored right now. I'll have to make an appointment to have these results explained to me.Sigh.
    TenseBulla 10 Replies Flag this Response
  • "Allopathic medicine does not have all the answers." --ElkeDon't I know it!! Nothing they've done or prescribed has helped, but I have managed to get some relief doing things that just "seem" right to me. The first success I ever had was when I switched to SLS-free toothpaste (Jason Powersmile) on the advice of a friend. As Acuann says, that definitely helped with the mouth sores. Oddly, I've never had a dentist or doctor suggest this. I also switched to a Sonicare toothbrush, which I've found is much more comfortable to use during an outbreak. (With a regular toothbrush, brushing is so painful I want to avoid it, but not brushing seems to make the sores last longer.) Another thing that seems to help is a product called "Ipsab." Apparently it's basically salt water with prickly ash bark extract and iodine; you just dab it on the sores with your finger several times a day. It's very soothing somehow.With this last outbreak, I think iron might have helped. When I was little, I was anemic, and I got into the habit of really looking at my blood (the color of it) whenever I happened to get a little cut or whatever. I was told I grew out of it when I was in my teens. But a couple of weeks ago I cut myself and I could not believe how orange my blood was, so lately I've been taking the occasional spoonful of molasses (as I did when I was little), and eating a bit more beef (not really my favorite). Tonight I'm having liver for dinner. I eat pretty well in general, and I've always loved veggies and such, but I'm terrible about taking my multivitamin; I always forget. So I'm trying to be better about that too.
    TenseBulla 10 Replies Flag this Response
  • Oh, thank you all so much for your responses!The support alone is priceless.When I made this post, I was 3 weeks into a terrible attack, but I was so depressed, and I didn't really expect a response, that I didn't check back. Now I'm feeling better (shortest outbreak ever!?!), but I'm determined to not let this go. In fact, yesterday I picked up a complete report of all of my lab results from 2001-2007 (most of which they've never bothered to send me, much less discuss with me). They're mostly gibberish to me, but there are at least seven with "abnormal" results. I'm sure it's nothing major (?) but I don't think anything should be ignored right now...
    TenseBulla 10 Replies Flag this Response
  • Don't know why those posted out of order...
    TenseBulla 10 Replies Flag this Response
  • Funny that you mention the thyroid. I have never spared a thought for my endocrine system, and I'm convinced my problem is an autoimmune thing. But just a few days ago, several little things, when put together, suddenly got me thinking in about my glands for the first time. My body is clearly attacking my skin; I wonder if it could it be attacking my endocrine system/adrenals/thyroid? Now, maybe I'm just crazy, but...1) I discovered about 6 months ago that my mom is now taking medication for hyperthyroidism (this is a relatively recent development). 2) I also just found out that one of her sisters had a pheochromocytoma neoplasm. I never heard about this before. I was like, :eek:!! Apparently it's some sort of adrenal tumor (hers was benign). Suddenly I realized I know precious few details about my family health history. I have 22 blood aunts/uncles and countless cousins, so it's going to take some time to go through them all!3) For months my boyfriend has been telling me I'm too thin, I should stop dieting. Well, I'm not dieting. I told him he was sweet but crazy, because I always weigh the same (144lbs). I finally weighed myself to prove it, and lo and behold, he's right. I'm down to 132lbs for no good reason at all.4) I get weird food cravings during a bad outbreak (nuts, fish). I eat a lot of canned tuna, but it doesn't satisfy the fish craving. This last time around, the craving was intense! I ate a ton of pollock one night, and weirdly, I felt a lot better the next day. Did the same the next night and continued to feel better. So much so that I looked up what's in it, and lo, it has a TON of iodine. As in, 3-5x the amount in many other "iodine rich" foods. I thought, "why would iodine make me feel better?" And then I thought of my mom, and my aunt. Hmm...
    TenseBulla 10 Replies Flag this Response
  • Funny that you mention the thyroid. I have never spared a thought for my endocrine system, and I'm convinced my problem is an autoimmune thing. But just a few days ago, several little things, when put together, suddenly got me thinking in about my glands for the first time. My body is clearly attacking my skin; I wonder if it could it be attacking my endocrine system/adrenals/thyroid? Now, I'm probably just crazy, but...1) I discovered about 6 months ago that my mom is now taking medication for hyperthyroidism (this is a relatively recent development). 2) I also just found out that one of her sisters had a pheochromocytoma neoplasm. I never heard about this before. I was like, :eek:!! Apparently it's some sort of adrenal tumor (hers was benign). Suddenly I realized I know precious few details about my family health history. I have 22 blood aunts/uncles and countless cousins, so it's going to take some time to go through them all!3) For months my boyfriend has been telling me I'm too thin, I should stop dieting. Well, I'm not dieting. I told him he was sweet but crazy, because I always weigh the same (144lbs). I finally weighed myself to prove it, and lo and behold, he's right. I'm down to 132lbs for no good reason at all.4) I get weird food cravings during a bad outbreak (nuts, fish). I eat a lot of canned tuna, but it doesn't satisfy the fish craving. This last time around, the craving was intense! I ate a ton of pollock one night, and weirdly, I felt a lot better the next day. Did the same the next night and continued to feel better. So much so that I looked up what's in it, and lo, it has a TON of iodine. As in, 3-5x the amount in many other "iodine rich" foods. I thought, "why would iodine make me feel better?" And then I thought of my mom, and my aunt. Hmm...
    TenseBulla 10 Replies Flag this Response
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  • I wouldn't supplement iron without checking on if you have an iron storage disease and you well could have with the bullae symtoms. If you are a male or a woman no longer menstrating... adding extra iron you don't need could get you sicker. For instance some porphyria diseases have such bullae. Same goes for the organ meats (liver), not a good idea to eat a lotof organ meats as you have to worry about getting too much vit A and other stuff in such organs. with the bullae you need to be very careful about supplements and diet. "Allopathic medicine does not have all the answers." --ElkeDon't I know it!! Nothing they've done or prescribed has helped, but I have managed to get some relief doing things that just "seem" right to me. The first success I ever had was when I switched to SLS-free toothpaste (Jason Powersmile) on the advice of a friend. As Acuann says, that definitely helped with the mouth sores. Oddly, I've never had a dentist or doctor suggest this. I also switched to a Sonicare toothbrush, which I've found is much more comfortable to use during an outbreak. (With a regular toothbrush, brushing is so painful I want to avoid it, but not brushing seems to make the sores last longer.) Another thing that seems to help is a product called "Ipsab." Apparently it's basically salt water with prickly ash bark extract and iodine; you just dab it on the sores with your finger several times a day. It's very soothing somehow. With this last outbreak, I think iron might have helped. When I was little, I was anemic, and I got into the habit of really looking at my blood (the color of it) whenever I happened to get a little cut or whatever. I was told I grew out of it when I was in my teens. But a couple of weeks ago I cut myself and I could not believe how orange my blood was, so lately I've been taking the occasional spoonful of molasses (as I did when I was little), and eating a bit more beef (not really my favorite). Tonight I'm having liver for dinner. I eat pretty well in general, and I've always loved veggies and such, but I'm terrible about taking my multivitamin; I always forget. So I'm trying to be better about that too.
    TaylorDeelwithit 382 Replies Flag this Response
  • hi there i have exactly the same symptoms as yourself and have had no joy from doctors!do you have any tips?you can email me back at ross.mclean8@btinternet.com thank you.p.s i was about in tears finally someone can understand how it fels!
    r555rmc 1 Replies Flag this Response
  • Here's what's been going on since I last posted here (way back in 2007!).After the fruitless round with the rheumatologist, I became pretty depressed/demoralized, and I just kind of gave up. I didn't go to the doctor for three years. (I never did get an appointment to have those test-results-I-coud-barely-understand explained to me, but since nobody ever contacted me about them, I figured they were okay.) I finally went back in April for a gyno checkup.So, I went back, and since I was in there, I mentioned my Mystery Illness once again. She pulled out my file and was obviously shocked to see the super-high H. pylori result. (Clearly, nobody had contacted her about it either. FOR THREE YEARS. Not cool.) I was happy though. I thought, "Hooray! Finally! That must be what my body has been going crazy trying to fight." She immediately put me on a huge round of antibiotics and prilosec. We'll have to wait a few months to see if it worked.Here's the thing, though. The last 18 months have been the best ever since this nightmare started.What did I do? I stopped taking my birth control pills.I've always had a hard time with my period. For years, it was irregular and completely debilitating. Everyone assured me it would settle down over time, but it never did. Then when I went out on my own, I had a horrible time with birth control pills. I went through 4 or 5 different kinds, but they all made me feel sick. On the active pills, I was forever throwing up— then I'd worry I'd thrown up the pill and wasn't protected— and on the blank pills, I'd feel even sicker; my period would kick my butt. I'd be out of commission for a week and a half with terrible cramps, even more vomiting, and heavy bleeding. I begged for an IUD, but was refused. We finally settled on Loestrin Fe, which is a "low-dose" Pill. Same problems, but much less, so, "tolerable." I took that for about 8 years. Still, my period sucked. There's something not right about it— I have a bunch of weird period-related complaints. (For example, I'm convinced I ovulate 2-3x on the right side for every once on the left, instead of alternating each month. And when it's on the left... OMG, it's agony. Also, sometimes it's like I'm allergic to my period blood. My whole vulva swells up and hurts, and the only remedy is to switch to tampons so the blood doesn't touch me. Weird.) However, my period had taken a back seat to the Mystery Illness over the years. I didn't really think they were related, although I'd vaguely noticed that the Mystery Illness was often worse right before and during my period.Anyway. I got fed up with the doctors and stopped going. I was sick of the Pill and stopped taking it. The difference has been HUGE. The first surprise was that my period became perfectly regular for the first time in my life. More to the point: the blisters and oral ulcers, while still present, are enormously reduced. I haven't had my whole mouth taken over since stopping the Pill, and the skin blisters are now fewer in number and tend to be smaller in size. (Though they do show up in more places now— sides of fingers, upper arms, under my fingernails.) It's like I went back in time by 10 years, to when I first noticed this as an Official Problem. I do sometimes get weeks-long episodes of itchiness, though. Just an uncentered, full-body itch. So, it's still somewhat problematic, but compared to how bad it had gotten, this is awesome.Another thing: when the ulcers/blisters/pain were really bad, I couldn't sleep. Sleep seemed to shorten the episodes, so I started to take OTC sleeping pills occasionally. They definitely seemed to help. Then I realized the sleeping pills are identical to OTC antihistamine pills (25mg diphenhydramine). Interesting. I started taking a pill a day during flare-ups (half in the morning and half in the evening). WOW. What a help!! Nothing the doctors ever gave me has helped like this.Okay. So for the last month, I've been feeling itchy and extra blistery, and I have a lot of mouth ulcers; nothing like before, but still, it's the worst it's been for quite some time. Then my period suddenly started— a few days early. It was very early last month, too, and the flare has been going on since then. Hmm. My current diagnosis is erythema multiforme, but it's never seemed quite right. (They say I have the "minor" form, but I get mucosal involvement, which is associated with the "major" form. But the major form calls for blisters mostly on the trunk; mine are mostly on extremities, like minor. And my lesions/blisters aren't perfect "target lesions" like they should be for EM. Lastly, EM minor is assoc with herpes— for which I've always tested negative, while EM major is supposed to be induced by certain drugs— particularly sulfonamides, which I haven't taken. So I took to the internet. On a whim, wondering if I was imagining the connection, I put in "erythema multiforme menses."JACKPOT, y'all.Turns out EM major can be induced by PROGESTERONE. Doesn't have to be artificial; it can be the progesterone your own body produces! I was up until 2AM doing research. (See here, here and here for an intro, and lots of references/links.) Finally, the symptoms ALL fit, including the up-and-down nature of the episodes, and some other stuff I'd never even connected to my problem. I'm over the moon! I had the weirdest, most wonderful cry last night— of pure happiness. I was sooo relieved! Even hubby celebrated. I'm convinced this is it. It's not something I'm eating, it's not the soap I'm using, it's not stress. I don't even care about treatment yet. The point is, it IS coming from inside, and it IS serious, and I'm NOT crazy! Hooray!!The funniest part is that I have a doctor appointment tomorrow— to quit her once and for all. Yet.] She's never seemed to take me seriously, and my physical condition after all this time kinda speaks for itself. And it's always bugged me that she seems obsessed with my reproductive system. (Remember, she's an OB/GYN. When all you have is a hammer...) She's gleefully "diagnosed" me with herpes three times over the years, despite all evidence to the contrary and zero evidence in favor (I test neg, hubby tests neg, I've never had a herpetiform rash of any kind, acyclovir has no effect). When I went in in April, we're talking about my skin problem, and out of nowhere she's like, "wanna do a chlamydia test"? Um... huh? I've been with the same man since I started with you! And you know that. I mean, chlamydia?? Can we please FOCUS here?! (She's done stuff like that before. It's like she's convinced that I just have to have an STD. I really hate to say this, but I've wondered if it's because I'm black.) So I'm done with her. I was like, "Enough. My ovaries are apparently fine, so I'm switching to an internist. If they explode in a few years, I'll just find a different gyno. I don't think it's related anyway."But the irony is, as of last night, I'm 99% convinced it IS gyno-related! I find that hilarious for some reason. (Maybe I'm going a little crazy after all.)I just can't help thinking, "Won't she be bummed!"Hee!
    TenseBulla2 10 Replies Flag this Response
  • For others suffering with these symptoms (currently diagnosed as erythema multiforme), here's what I've found helpful.For the mouth ulcers:1) Get thee a product called "Canker Cover"!!!It's a little dry pill that you put on the ulcers; it sticks in place and forms a durable cover that completely eliminates the pain for HOURS. I mean completely. It replaces the missing skin so your nerve endings aren't so exposed. I clean my mouth really well with a peroxide rinse, then apply. Two or three nights of this, and the ulcers are usually gone, no joke. And! Unlike numbing gels and whatnot, it doesn't taste bad (slightly minty), so if necessary, you can eat and ACTUALLY ENJOY YOUR FOOD. Just that alone is such a psychological boost, I swear it makes the episodes shorter. Living on scrambled eggs and Ensure is no kind of living! (Besides, if the "repair crew" has no materials to work with, how are they going to fix the "potholes"?) I buy mine here, 5 boxes at a time; it's the cheapest place I've found. Read my review there for tips on application; it's really important to apply them properly for maximum relief.2) Forget Orajel, Kanka and Anbesol. They just aren't strong enough for me, and the stuff costs a mint.For quick/portable pain relief, I use a product I found at Rite Aid called "Orasol" (it's their own brand). It's 20% benzocaine, as opposed to 10%. That's what I'm talkin' about! One bottle lasts me months, and I don't go anywhere without it. (BTW, when the ulcers are really bad, I use this to numb the area before I apply a Canker Cover, because CC can kind of sting for the first 5 minutes or so.) It's best applied with a cotton swab held in place for 1-2 minutes (rather than just dabbing it on with your finger). I also find that it helps to use a lighted dental mirror to pinpoint exactly where the sore is. There are so many nerve endings in your mouth, it can be hard to determine their exact location just by feel. Like, it'll seem like my tongue is sore in one spot, only to realize the ulcer is actually an inch or so away.3) Salt water rinses. Basic as this seems, when youre entire mouth feels puffy/swollen/sore, it really helps. Make the saline solution good and strong, and swish (or just roll it around in your mouth) for a full 3-5 minutes. (It's longer than you think.) It reduces the swelling, and is just generally soothing. I think it's also slightly antibacterial, so that surely helps. I usually rinse afterward with a weak saline solution, just to get the super-salty taste out of my mouth. Note, I bake a lot, so I have plain (uniodized) salt in my house. I've tried both. I could be crazy, but it seems like the iodized salt (table salt) works slightly better than plain.4) Another soothing product I've found is called "Ipsab." I have to get it at the health food store. It's basically salt water with prickly ash bark extract and iodine. You can dab it on straight, or add it to water and swish. Both this and salt water don't last very long, but on the other hand: zero side effects! So you can do it as often as necessary.For the skin blisters, erythema and generalized allergic feeling:Diphenhydramine, full stop!!!This is Benadryl. I just buy a generic store-brand version (25mg). This stuff is awesome. The only downside is, it makes you sleepy. (OTC sleeping pills are exactly the same— 25mg diphenhydramine.) I usually take anywhere from half a pill to one whole pill, at night. For persistent/severe episodes, I take 3 halves spread through the day. (Label says you can take up to 50mg per day.) Note, I've found that diphenhydramine sold as allergy/antihistamine pills is about 30-50% cheaper than when it's sold as sleeping pills. Not sure what that's about! I've also recently read that some people with the related condition, APD (autoimmune progesterone dermatitis) use the topical Benadryl cream. I haven't tried that yet, but I'm definitely going to.And now the thing that helped me the most, in general:If you're a woman, STOP TAKING HORMONES. This won't work for everybody (as noted in my post above, there are other more common EM triggers), but I cannot emphasize enough what a huge difference eliminating the Pill made for me. The above tips help manage the symptoms, but when I stopped taking the Pill (for totally unrelated reasons), that actually seemed to dial back the entire syndrome itself. The Pill never seemed to agree with me, but the docs wouldn't let me go off it. I eventually went AWOL and quit it myself— WHAT A DIFFERENCE! After 18 blissful months, I finally put 2 and 2 together, and I'm done with the Pill FOREVER. According to my research so far, the problem is the hormones. Specifically, progesterone. (And maybe estrogen too.) So that means no Pill, Norplant, Nuvaring, etc. Ditto HRT and infertility treatments; they can cause the same problems. And get this: the hormones don't even have to be artificial— you can literally be allergic to your own natural hormones! (See my post above.) If you're a woman and you seem to have hit a brick wall with your EM or chronic urticaria, definitely look into this!I sure hope this helps someone. I know how intolerable this pain can be.Good luck!!!
    TenseBulla2 10 Replies Flag this Response
  • Oh, dang it.Looks like my review of Canker Cover is gone.Here's the best way I've found to apply them:Clean your mouth as best you can with a saltwater or peroxide rinse. If possible, brush your teeth.The area has to be as dry as possible or the tablet won't stick. Dry the ulcer really well with a cotton swab. Then immediately apply the tablet, white side down, to the ulcer. It needs to cover the whole ulcer completely, or you'll still feel pain. For small ulcers, I break the tablets in half, or even quarters. For large ones, I use as many pieces as necessary to cover the whole thing. (Store leftover pieces tightly wrapped in plastic in a VERY dry place.) Press/hold the cover in place for as long as you can (at least one full minute), being sure to keep it as dry as possible. I usually break the tip off one end of a cotton swab and use the bare stick to press down the tablet. (Otherwise, the tablet can stick to your finger!) Once it's firmly stuck, it sometimes helps to put a drop of water on the top of the tablet, to keep that side from sticking to other parts of your mouth.It can be tough to get them to stick to your tongue, since it's so wet.Dry the area as much as you can, then put on the tablet quickly, before the spot gets moist again. Then, for the press/hold, I find it helps to tip my head back and stick my tongue out. This keeps saliva from touching the tablet before it's stuck, and it suppresses the urge to swallow (which can wet or dislodge it). If even one tiny part isn't well-stuck, the cover will wear away prematurely— not a disaster, but hey, they're kind of pricey.Now, I won't lie: for the first couple of minutes, it's going to sting. But then? PURE PAINLESS BLISS. You won't believe the relief. After about 10 minutes in your mouth, the dry tablet will hydrate into a thick layer of stiff gel, totally covering the sore. I've had it last for up to 12 hours— much less if you're talking or eating/drinking, but still, several hours. (The gel is safe to swallow as it wears away. Or, just spit out the pieces as it breaks down.) If you can't take the sting (it sucks when you have a lot of sores to cover), use a numbing gel like Orasol first.Important note:DO NOT attempt to remove a cover once it's on. It will not be pretty. If you've ever had a communion wafer, you know how it's so dry that it kind of fuses to your tongue? And if you peel it off, it's almost like it takes a little of your tongue's skin with it? Well, it's like that, but worse, because you already have no skin! So don't do it! You have to let it wear away naturally. Similarly, you have to get the cover placed correctly the first time— you won't be able to move it once it hits your skin. Again: a lighted dental mirror is kind of necessary. If you stick a tablet on on askew and it doesn't quite cover the sore, just break another in half and use that to cover the exposed part. When they hydrate, they'll join to form one continuous gel-blob.One last thing:The tablets won't stick to the dry part of your lips. To completely cover a sore right at the wet/dry border, you may find that part of the tablet extends out onto the dry area, unstuck. It looks a bit gross, and the cover won't last as long as it would elsewhere (it won't stand up to talking/eating/drinking). So I treat those at night only. That way nobody has to see me, and I get the maximum treatment time. Nighttime is when your body does its repairs anyway.Hope that helps!
    TenseBulla2 10 Replies Flag this Response
  • Hmm. Looks like these are posting out of order.There's supposed to be a post about "things that have helped me" between the the two posts above, where I first mention Canker Cover and where to get it.Whatev.Hopefully it'll eventually show up, and that last post will make more sense! :rolleyes:
    TenseBulla2 10 Replies Flag this Response
  • Hmm. Looks like these are posting out of order.There's supposed to be a post about "things that have helped me" between the the two posts above, where I first mention Canker Cover and where to get it. Whatev.Hopefully it'll eventually show up, and that last post will make more sense! :rolleyes: HiCongratulations on finding out what your problems were. The doctors really let you down.I just want to thankyou for bothering to post what you found and the way to cure it. I think your advice could benefit a lot of women.Thank you for taking the time to finish your story, a lot of people do not. You write so well I guess you must be a professional writer.
    chrismia 159 Replies Flag this Response
  • Oopsie. I wrote above that the daily max for diphenhydramine is 50mg— it's actually 300mg daily (ie: up to six 50mg doses per day). 50mg is the max adult dose at one time.Saw my doc this morning and "confessed" that I'd been taking diphenhydramine and that it's really helped. She took it fairlywell. After grilling me on the dose I've been using (look man, I'm no fool!), she eventually admitted that hey, if it works, it works; can't argue with that. She suggested trying OTC Claritin instead; apparently it lasts longer and causes less drowsiness. Cool.
    TenseBulla2 10 Replies Flag this Response
  • Has anyone tested for porhyria's, it could be genetic or induced by drugs or chemical/lead exposures. It sure sounds like it to me, especially when you have a hard time with hormonal changes. I'd also watch out for taking Tylenol and other medications. Tylenol has been known to cause blistering, it does me this way. But I have problems with many drugs, including steroids and now benadryl is starting to bother me
    Anonymous 1 Replies Flag this Response
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