12438738 tn?1426022815

Skin Issue nearly 10 doctors are clueless!

What is going on with my skin? It keeps spreading, just now it is more rapid. This has been ongoing for 1.5 years now, have seen nearly 10 doctors, and none of them know what it is. It began nearly 1 month since moving to LA (moved there from phoenix). I just recently had to go to the ER a couple days ago because my throat was so swollen that all of the skin broke, making it more painful than when I got a 3rd degree burn on my hand. I didn't sleep for 4 straight days until going to the ER. The rash started on my hands, arms, and now is out of control and recently covered my chest and neck. I am having night sweats and the itching is incessant! Taking >30mg of Prednisone starts to clear it up, then comes back with a vengeance as soon as the dosage goes below. After all the side effects of the creams and oral, I refuse to take them, since they do not work! I honestly believe it may be viral or an infection. Please help! (more pics available!)

itching, night sweats, chills, fatigue, twitching, muscle soreness, muscle spasms, skin peeling, chest and neck nearly completely raised red rash, palms on hands with nearly no skin, itching becomes worse at night, coming out of the shower makes the rashes worse, seem to be short of breath when I attempt to jog, insomnia, rash is raised with border, loss of skin pigment due to rashes on arms
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12438738 tn?1426022815
I wish I would have seen this earlier...Saw the doctor yesterday and she prescribed medication without any testing...but it gets better...She prescribed me medication for a VAGINAL YEAST INFECTION! Ha unbelievable. I should be upset, but this is so ridiculous I just continually laugh.
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12438738 tn?1426022815
I don't actually have those things. But I am going to try dairy/whey diet free. I have gone gluten free for going on 2 months with no results.
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Avatar universal
I've been looking for answers for my rash and all of your symptoms sound like a autoimmune I come across called dermatomyositis almost all of your symptoms match it.. might want to ask your dr
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4851940 tn?1515694593
Do you drink milk, eat chocolate, butter, marg, cakes, biscuits, flavoured crisps?  I have no doubt that you do.

It has been bugging me and it suddenly dawned on me that I have seen this type of thing before on a young child.

You may have an intolerance to whey.  Try and avoid eating and drinking anything that contains whey.  Whey is the liquid that is left after the milk has been curdled and is used in other products.

You may have allergies to other things.  But this would be a start.

Read labels of foods and drinks and avoid any that contain lactose and whey.  Alternatives to ordinary milk is coconut milk, almond milk, soya milk.

Keep a record of things progress.
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Avatar universal
Very sad to see you suffering this long with the problem. Why dont you use "wet wraps" to relieve itching. I will give you a wonderful site for this.
You will feel very comfortable, and should help you till a diagnosis is reached.
My regards and best wishes.
Speedy recovery.
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4851940 tn?1515694593
Try applying coconut oil to your skin.

It can help with lots of skin disorders.  It is antifungal and antibacterial and is natural.

You can also eat the product and purchase jam, flour and sugar made from coconut oil.

Only buy the Virgin coconut oil
MedHelp member  TheLightSeeker is very knowledgeable on coconut oil, you may consider writing him a message.
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4851940 tn?1515694593
I looked at your pictures, and you poor thing.  It looks so sore.

Your skin is very thin and also looks very dry.

Don't use normal soaps ever.  As you do not have a doctor at the moment, ask the pharmacist for assistance with regard to purchasing an emollient which you use instead of soap.  The emollient contains no steroids or cortisone is moisturising.  Do read the ingredients to make sure that you are not allergic to any of them.  You can also purchase a thinner type to pour into your bath water.  Only use lightly warm water, as you mentioned that the hot water makes your skin worse.

Only use non biological detergents and the fabric softeners for delicate skin.  You may have an allergy to the detergents, something that you are coming in contact with, or something that you are eating or drinking.

Are you in contact with any chemicals at all? Touching rubber or latex?  Did you wash the creams that you used off your hands?  Steriod creams can thin the skin and need to be used carefully.

On your hands it appears as if it is a contact dermatitis.  I suggest you buy some cotton gloves and before going to bed smother your hands with lots of emollient and put the gloves on to sleep in.  Your hands are begging for moisture.

Mono is a viral infection and it still may be that that is causing all the skin problem.  You certainly need something to help you.  As the prednisone was helping, why have you stopped using it?

I don't know what your results mean, but if you have a bacterial infection, that certainly won't be helping your skin issue.

I am not familiar with those units of the glucose.  
What did the doctors say?

Buy a pot of natural set yogurt and apply that to a small area on your belly to see if will help.  It will feel cold.  Yogurt is very cooling and reduces the inflammation.  It may help to soothe down the angry red skin.

I still feel you require medical help urgently.

Let me know how you get on.
Best wishes.
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Avatar universal
When fungus infection is treated with steroids, as I understands blurs the presentation of the disease.
Do check in with your doc.
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12438738 tn?1426022815
just added more pictures to my profile...
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12438738 tn?1426022815
A skin swab has not been taken. When I was in the ER the other day, they had blood work done, but none for autoimmune disorders or bacterial infections...came back all normal except that I was slightly high in 4 areas

1) mono% = 10.3%
2) Eos% = 6.6%
3) ALT = 44 units
4) Glucose = 114mg (doctor gave me a popsicle before they drew blood)

Yes, I have followed every doctor's order and then some. Currently not on prednisone. I have recently moved to the Silicon Valley area and trying to find a doctor. One dermatologist believed it to perhaps be eczema, however it did not add up to all that was going on. She also "lost" my skin biopsy - or the lab.

I have been eating healthy, even have tried completely gluten and egg free for the past 1.5 months.
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Avatar universal
As a pathologist my dad used to tell me that in obscure skin conditions better to get a biopsy.Perhaps your doctor might consider it to get a diagnosis.
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4851940 tn?1515694593
If you never had a skin swab taken, then ask the doctor to do that so that it can be sent to the laboratory to for analysis.

With all the symptoms that you are having, it sounds highly likely that you have a bacterial infection.

Make an urgent appointment to see your doctor and I do hope that he will prescribe an antibiotic for you.  An antihistamine medication is likely to help too.

Prednisone is used to treat allergic disorders, ulcerative colitis, psoriasis and arthritis so that is why it is helping you.  Don't stop using it too soon and follow the advice of your doctor.  Do tell your doctor that the condition comes back worse when the dose is reduced.

Did none of the medical profession give any indication of what this condition may be?  

You may find bathing in a bath with a large cupful of Epsom Salts and a little baby oil may help.  Epsom Salts on their own will dry the skin.  Epsom Salts contain magnesium which absorbed through the skin and is good for us.  

Have you had any blood tests done to find out if you do have an autoimmune disorder or a bacterial infection?  If not, ask your doctor to get a blood test done to check for autoimmune disorders, liver function and bacteria.

As the hot shower makes the condition much worse, only have cool showers.

Eat a healthy and wall balanced diet with lots of fresh fruit and vegetables.  Cut out or cut down on processed, junk and all sugary foods, and fizzy drinks.  Drink plenty of fluids and especially water.  2 litres a day is usually recommended, but more if you are sweating a lot.

Keep a written record of what you eat and drink and any exposure to the sun or wind to see if any of these make your condition worse.  So that you can see if there is a trigger that you can then avoid.
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