4 different doctors have not been able to diagnose my skin issue. Ideas?
March 2, 2016 10:40 PM Subscribe
IMAGE of the sores: http://i.imgur.com/YLhj1gx.jpg
* These random (itchy) sores are all over my body. I've tried a number of different steroid cremes -- none have been effective. The only medication that seemed to make a difference was prednisone. But the doctors only let me use it for two weeks.
* Tested negative in 3 separate blood tests for all the standard sexual diseases (HIV, herpes, syphilis ect).
* Ultrasound done on torso, looked healthy
* It started about 8 months ago, got progressively worse -- peaked at 4 months then has tapered down but still a problem. The working theory by 4 different doctors is "a viral infection that is weaning off slowly" At the 4 month mark, my "bilirubin count" was quite high, but has since returned to "slightly higher then normal"
* Most of the sores are around the genital area, sides of my torso, feet and hands. Itching them does make them worse.
* Currently also have a rash on the top part of my shoulders. It is dry, red and itchy feeling. But no visable sores like shown in the photo. Those are all lower on my body.
* Have been feeling more exhausted lately compared to usual.
* Visited a naturopath today which performed a "live blood analysis". Her thoughts on the issue: 1. a yeast infection (candida) 2. mineral deficiency 3. adrenal fatigue 4. digestion problems. I did look at pictures of candida sores after the appointment -- and whilst some looked familiar I am skeptical that this could be what it is.
Any ideas appreciated. I am going to attempt tomorrow to see another specialist. I have already been to one dermatologist and 3 other non-specialized doctors (one of them is my family doctor).
* These random (itchy) sores are all over my body. I've tried a number of different steroid cremes -- none have been effective. The only medication that seemed to make a difference was prednisone. But the doctors only let me use it for two weeks.
* Tested negative in 3 separate blood tests for all the standard sexual diseases (HIV, herpes, syphilis ect).
* Ultrasound done on torso, looked healthy
* It started about 8 months ago, got progressively worse -- peaked at 4 months then has tapered down but still a problem. The working theory by 4 different doctors is "a viral infection that is weaning off slowly" At the 4 month mark, my "bilirubin count" was quite high, but has since returned to "slightly higher then normal"
* Most of the sores are around the genital area, sides of my torso, feet and hands. Itching them does make them worse.
* Currently also have a rash on the top part of my shoulders. It is dry, red and itchy feeling. But no visable sores like shown in the photo. Those are all lower on my body.
* Have been feeling more exhausted lately compared to usual.
* Visited a naturopath today which performed a "live blood analysis". Her thoughts on the issue: 1. a yeast infection (candida) 2. mineral deficiency 3. adrenal fatigue 4. digestion problems. I did look at pictures of candida sores after the appointment -- and whilst some looked familiar I am skeptical that this could be what it is.
Any ideas appreciated. I am going to attempt tomorrow to see another specialist. I have already been to one dermatologist and 3 other non-specialized doctors (one of them is my family doctor).
The Naturopath is not wrong about the vitamin deficiency, adrenal fatigue, and yeast infection - but the causality goes in the opposite direction. Being deficient and depleted creates conditions where stuff like candida can thrive, which your body would normally keep in check, and then the candida further effects your autoimmune system.
Those look like small patches of psoriasis, to me. I'm surprised the dermatologist did not suggest this - is there something else about these patches that would discount psoriasis? Maybe just that the patches are small and have not become larger? Maybe it's something psoriasis-similar? I have no idea, but I had psoriasis as a child, and as an adult I get similar patches to yours, but not as many and ONLY when stressed out. I was abused as a child, and my childhood issue with psoriasis was definitely stress related.
Your adrenals get over-worked when you are stressed out, but your liver might be, too. Clinically, liver problems often result in skin issues. So maybe look at liver function?
It could just be allergies. Or a weirdo skin fungus. I had a friend who had hives for like 10 months for no reason - and then they just stopped. There was never a diagnosis and she was a doctor and went to a bunch of doctors while she was suffering!
So they good news is this is likely temporary. The bad news is that while you pursue a traditional diagnosis, you seem like you might not want to address the underlying issue that made the way for this affliction to occur.
You have nothing to lose by altering your diet, lifestyle, and taking some herbs to help your body do what it usually does when healthy - so go for it! The worst thing of you dialing in your diet and lifestyle is you'll be healthier overall when you do get a traditional diagnosis.
posted by jbenben at 11:27 PM on March 2, 2016 [4 favorites]
Those look like small patches of psoriasis, to me. I'm surprised the dermatologist did not suggest this - is there something else about these patches that would discount psoriasis? Maybe just that the patches are small and have not become larger? Maybe it's something psoriasis-similar? I have no idea, but I had psoriasis as a child, and as an adult I get similar patches to yours, but not as many and ONLY when stressed out. I was abused as a child, and my childhood issue with psoriasis was definitely stress related.
Your adrenals get over-worked when you are stressed out, but your liver might be, too. Clinically, liver problems often result in skin issues. So maybe look at liver function?
It could just be allergies. Or a weirdo skin fungus. I had a friend who had hives for like 10 months for no reason - and then they just stopped. There was never a diagnosis and she was a doctor and went to a bunch of doctors while she was suffering!
So they good news is this is likely temporary. The bad news is that while you pursue a traditional diagnosis, you seem like you might not want to address the underlying issue that made the way for this affliction to occur.
You have nothing to lose by altering your diet, lifestyle, and taking some herbs to help your body do what it usually does when healthy - so go for it! The worst thing of you dialing in your diet and lifestyle is you'll be healthier overall when you do get a traditional diagnosis.
posted by jbenben at 11:27 PM on March 2, 2016 [4 favorites]
A virus infection can be associated with onset of celiac disease, dermatitis herpetiformis.
posted by hortense at 11:43 PM on March 2, 2016 [1 favorite]
posted by hortense at 11:43 PM on March 2, 2016 [1 favorite]
I agree very much with jbenben's sentiment that it never hurts to improve your diet and your lifestyle if there is room for improvement there. However, I disagree about the naturopath. They are wrong. Those are just all the go to diagnoses that naturopaths give everyone.
Live blood analysis [Wikipedia]: "There is no scientific evidence that live blood analysis is reliable or effective, and it has been described as a fraudulent means of convincing patients that they are ill and should purchase dietary supplements.
Live blood analysis is not accepted in laboratory practice and its validity as a laboratory test has not been established. There is no scientific evidence for the validity of live blood analysis, it has been described as a pseudoscientific, bogus and fraudulent medical test, and its practice has been dismissed by the medical profession as quackery. The field of live blood microscopy is unregulated, there is no training requirement for practitioners and no recognised qualification..."
Re: psoriasis, it typically has a silvery scale that I don't see in these photos, although the photos seem a little blurry.
Going to a second derm opinion is a good idea. I'd be curious to know what they tell you.
posted by treehorn+bunny at 12:47 AM on March 3, 2016 [23 favorites]
Live blood analysis [Wikipedia]: "There is no scientific evidence that live blood analysis is reliable or effective, and it has been described as a fraudulent means of convincing patients that they are ill and should purchase dietary supplements.
Live blood analysis is not accepted in laboratory practice and its validity as a laboratory test has not been established. There is no scientific evidence for the validity of live blood analysis, it has been described as a pseudoscientific, bogus and fraudulent medical test, and its practice has been dismissed by the medical profession as quackery. The field of live blood microscopy is unregulated, there is no training requirement for practitioners and no recognised qualification..."
Re: psoriasis, it typically has a silvery scale that I don't see in these photos, although the photos seem a little blurry.
Going to a second derm opinion is a good idea. I'd be curious to know what they tell you.
posted by treehorn+bunny at 12:47 AM on March 3, 2016 [23 favorites]
How big are these patches? Small itchy patches could be scabies.
posted by pharm at 1:16 AM on March 3, 2016
posted by pharm at 1:16 AM on March 3, 2016
Exhaustion & itchiness could be primary biliary cholangitis but I don’t think that normally presents as a rash or skin inflammation, so probably not.
posted by pharm at 1:36 AM on March 3, 2016
posted by pharm at 1:36 AM on March 3, 2016
OP: treehorn+bunny is a physician.
I am not a physician. If this were me, I'd be getting a second opinion from a dermatologist.
posted by ImproviseOrDie at 1:51 AM on March 3, 2016 [5 favorites]
I am not a physician. If this were me, I'd be getting a second opinion from a dermatologist.
posted by ImproviseOrDie at 1:51 AM on March 3, 2016 [5 favorites]
The treatment being ineffective doesn't mean the diagnosis was wrong. It simply means more remedies must be tried. Be sure to go to a real dermatologist. Many of the same skin symptoms, regardless of the underlying cause, take the same core set of treatments and medicines. It took 20 years to find one that works well for me.
posted by Mo Nickels at 3:01 AM on March 3, 2016
posted by Mo Nickels at 3:01 AM on March 3, 2016
The locations you mentioned could also indicate a chemical reaction to detergent. Have you changed your laundry soap recently? Maybe switch to a hypoallergenic soap for a while. It can't hurt.
posted by ananci at 3:50 AM on March 3, 2016 [1 favorite]
posted by ananci at 3:50 AM on March 3, 2016 [1 favorite]
Hand, foot and mouth disease? Most often caused by coxsackie virus, usually no symptoms, usually infects children. I got a mild case once with a few painless mouth blisters. But where blisters occur, they are in a similar distribution as you've described (hands, feet, mouth plus 'nappy area'). Usually a short infection of 1-2 weeks but chronic/recurring infection might be possible, depending on the causative virus & host immune system. Can infect other organs/systems of the body, rarely (you mentioned mildly elevated bilirubin - though might not be related).
posted by Stephanie_Says at 5:18 AM on March 3, 2016
posted by Stephanie_Says at 5:18 AM on March 3, 2016
Are you near a major university med school/teaching hospital? If so, I would suggest making an appointment with their dermatology clinic over a random dermatologist.
posted by FencingGal at 6:22 AM on March 3, 2016
posted by FencingGal at 6:22 AM on March 3, 2016
Agree with Treehorn+bunny that the naturopath's diagnoses sound like complete woo, but also agree that chronic skin conditions are often worsened by stress and poor diet and that improving those things can't hurt.
Have you had a biopsy done? Are those little blisters fluid-filled? Sometimes unroofing one of them and sending for analysis can be helpful if it's a virus.
Agree with seeing a different dermatologist--someone who specializes in medical dermatology and not cosmetic, preferably at an academic medical center because they get all the weird stuff-- and bring your lab work.
posted by The Elusive Architeuthis at 6:38 AM on March 3, 2016 [2 favorites]
Have you had a biopsy done? Are those little blisters fluid-filled? Sometimes unroofing one of them and sending for analysis can be helpful if it's a virus.
Agree with seeing a different dermatologist--someone who specializes in medical dermatology and not cosmetic, preferably at an academic medical center because they get all the weird stuff-- and bring your lab work.
posted by The Elusive Architeuthis at 6:38 AM on March 3, 2016 [2 favorites]
IANAD but I echo treehorn+bunny: Live blood analysis is completely fraudulent. Run from that "naturopath."
Refractory dermatitis is not uncommon and can be hard to diagnose. What everyone is telling you is correct, you need a serious medical dermatologist.
posted by spitbull at 6:48 AM on March 3, 2016
Refractory dermatitis is not uncommon and can be hard to diagnose. What everyone is telling you is correct, you need a serious medical dermatologist.
posted by spitbull at 6:48 AM on March 3, 2016
I had small (1-3 cm), red, itchy patches exactly like that. Also with sudden onset. They really did look exactly like your picture.
I figured out that I'd done some laundry where the detergent hadn't been completely rinsed out, and my skin was sensitive enough to it that I started breaking out in these random mystery hives. This may not be your issue, but it wouldn't hurt to think about reducing/changing the laundry soap.
posted by zennie at 7:38 AM on March 3, 2016
I figured out that I'd done some laundry where the detergent hadn't been completely rinsed out, and my skin was sensitive enough to it that I started breaking out in these random mystery hives. This may not be your issue, but it wouldn't hurt to think about reducing/changing the laundry soap.
posted by zennie at 7:38 AM on March 3, 2016
Response by poster: OP here, thank you to all to have posted here :) I am going to explore your answers today. This has given me some renewed sense of hope to keep trying to figure out what this stupid thing is.
posted by audio at 8:15 AM on March 3, 2016
posted by audio at 8:15 AM on March 3, 2016
My mother has an unexplained rash that they are still trying to figure out the cause of, but right now the most likely suspect is a medication she takes for her Type Two diabetes.
posted by MexicanYenta at 8:47 AM on March 3, 2016
posted by MexicanYenta at 8:47 AM on March 3, 2016
I don't understand why shingles hasn't been mentioned. It's pretty common, and your symptoms (including the fatigue) fit. Has no doc even looked into the possibility??
posted by mysterious_stranger at 8:53 AM on March 3, 2016 [1 favorite]
posted by mysterious_stranger at 8:53 AM on March 3, 2016 [1 favorite]
If changing cleansers and detergents, one thing to look at is the new hotness, the glucosides. According to an a nice journal-ish article I read recently (can't find it, will keep looking), many dermatologists and allergists are finding that fragrance is no longer the greatest cause of skin allergies. New "gentle" glucoside detergents that have replaced the sulfates seem to be more likely to cause reactions and are more difficult to figure out.
Wish I could be real help, but most of my skin problems seem to be undiagnosable too. I've had similar looking patches and rash all over, dx (self and doctor) was pityriasis rosea. Problem is that it can last a surprisingly long time and nothing makes it better but time. The only relief I had was from taking benedryl.
And I strongly doubt it is shingles. I've had shingles, you and doctors KNOW when it is shingles.
Just for fun, my favorite website for skin problem information is DermNet.
posted by monopas at 10:30 AM on March 3, 2016
Wish I could be real help, but most of my skin problems seem to be undiagnosable too. I've had similar looking patches and rash all over, dx (self and doctor) was pityriasis rosea. Problem is that it can last a surprisingly long time and nothing makes it better but time. The only relief I had was from taking benedryl.
And I strongly doubt it is shingles. I've had shingles, you and doctors KNOW when it is shingles.
Just for fun, my favorite website for skin problem information is DermNet.
posted by monopas at 10:30 AM on March 3, 2016
Shingles have a very classic distribution, look and PAIN that does not fit here.
I would see another dermatologist and ask for a biopsy since this has been going on for so long.
posted by SLC Mom at 10:34 AM on March 3, 2016
I would see another dermatologist and ask for a biopsy since this has been going on for so long.
posted by SLC Mom at 10:34 AM on March 3, 2016
I've known people who had non-classic presentations of shingles. No, it does not have to be painful. The distribution varies. It is not always a band, not always on the flank.
posted by mysterious_stranger at 10:40 AM on March 3, 2016
posted by mysterious_stranger at 10:40 AM on March 3, 2016
Erythema multiforme?
posted by honey.orange.honey at 7:34 PM on March 3, 2016
posted by honey.orange.honey at 7:34 PM on March 3, 2016
Nthing dermatologist. I have Basal Cell Carcinomas that kind of look like that - but they do not itch or hurt at all.
posted by getawaysticks at 4:06 PM on March 4, 2016
posted by getawaysticks at 4:06 PM on March 4, 2016
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