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Old 10-01-2011, 10:24 PM
 
Location: Chicago 'burbs'
1,022 posts, read 3,085,625 times
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When I first saw this I thought Hand Foot Mouth. Looks just like it.

Have any of the doctors given you steroids? Hopefully it is some strange food allergy and you can get some relief soon!!

I hope that you are able to find a good doctor that can help! I can't imagine what the last 7 years have been like for you. Good luck!
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Old 10-01-2011, 11:22 PM
 
Location: Nebraska
4,178 posts, read 9,637,531 times
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Want to hear something weird? I had those same bumps when I lived in Albuquerque, NM. Back in the 70's the doctors just passed it off as a reaction to some plant or other, or even the desert sun. The skin would actually weep and split open. It hurt like heck, but they called it 'minor'. I used to put aloe on my hands and put sox over them just to sleep at night. When I moved from Albuquerque, they disappeared.

My oldest son has lived all over the world, lives now in Las Vegas. He has developed the same thing since he moved to Vegas! The docs still don't know what it is - something in the water, an allergic reaction to soap, an immune disorder - they simply do not know. His wife makes all their own soap including laundry soap, which helps a little, but it never goes away completely. We have tried everything from tea tree oil to lotions, and even immune-system supplements, the docs have prescribed steroids, astringents, oils, and lotions, and nothing makes it go away.

I was diagnosed with lupus 6 years ago, and so far his tests have been negative. But we moved 3 years ago to a very dry area of Nebraska, and I still haven't had any breakouts yet, even though I am outside all of the time. So I am wondering if it is perhaps a combination of things - water, an immune system failure, soaps, even food reactions. I do know that the water here is much purer than anywhere else; that, cleaner air, less stress, and a healthier diet has helped reduce my lupus flareups immeasurably.

Perhaps your trip to Mexico introduced you to an allergen or something that affected your immune system, and certain things (water, soap, foods) where you live are exacerbating it or causing a reoccurance or flare. But I feel for you; it is hard to function with these things, even though doctors might dismiss them since they are 'merely' painful and not life-threatening.
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Old 10-02-2011, 12:41 AM
 
Location: New Jersey
12,131 posts, read 7,030,136 times
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Some people have mentioned hand, foot, mouth, a certain possibility. However, this disease usually strikes the young. For you, I would be more worried about secondary syphilis. This can creep up months or even years after primary infection. Sometimes the initial RPR is negative. If this disease progresses, it can cause brain damage, along with some of the neurological symptoms you have described. You should, at the very least, have a second RPR. If treated quickly, the disease is curable.
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Old 10-02-2011, 06:49 AM
 
3,651 posts, read 6,496,331 times
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Thank you all for ur responses! I have been given a referral to Mayo Clinic in Jacksonville as I'm not getting better and ended up in the ER last night with extreme/severe weakness, shakiness, dizziness stomach sorness etc. They have no answer but said I had very slightly low potassium (3.5) but it shouldn't be effecting me like this. I was given fluids and sent on my way of course. I make my appt tomorrow. I showed the doc my sores and he said it could be like a scleroderma caused my a connective tissue disease.. I hope to get some answers from Mayo as soon as I can't. I've already had to quit culinary school 5 weeks from graduation (so gonna cry over that one when this is over!) and haven't gotten out of bed in 2 weeks. When I find out I will let you know whats going on (if your even that interested :-P ) I def have some conditions to throw at the doctors to check for now.

Thank you all!
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Old 10-02-2011, 07:13 AM
 
Location: Mostly in my head
19,865 posts, read 57,913,059 times
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Of course we are interested! You have had a rough time of it. I hope you get some answers and treatment.

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Old 10-03-2011, 06:08 PM
 
3,651 posts, read 6,496,331 times
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So I went to my rheumatologist today who said he doesn't seen any way I could have a connective tissue disease. He said he's done every test he can think of and he can't make the connection. They think I'm having an allergic food reaction specifically yeast/gluten . It makes sense and they said that a lot of autoimmune issues are caused by gluten problems. I SO hope this is it after 7 years of being deathly sick with no answer I've kinda lost hope and I can't even think to get my hopes up for this but I so want to badly.. So there's my update next step food test!
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Old 10-04-2011, 09:43 AM
 
2,222 posts, read 9,720,938 times
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Quote:
Originally Posted by Sweetbottoms View Post
They think I'm having an allergic food reaction specifically yeast/gluten .
I feel for you. I have a neighbor who suffered various things for years until she found out she was celiac. I believe she had an upper endoscope biopsy done along with other tests to finally diagnose it.

A skin condition called Dermatitis Herpetiformis can develop. You can go to Google Images and view pictures for yourself. There is a photo of a tongue that looks just like yours. I don't want to scare you, but if you are diagnosed with this, please also consult with a Gastroenterologist as there are some people who develop intestinal cancers. Something else to watch for.

Best of luck. I hope you find your answers.

I also wanted to add that you probably should not change your diet until you have a diagnosis. If you stop eating gluten, the allergies may not show up. But talk to your doctor about that.




Last edited by Beth56; 10-04-2011 at 09:56 AM.. Reason: to add...
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Old 07-18-2012, 12:51 AM
 
1 posts, read 3,366 times
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I am sure you have probably seeked care for this, but just in case u have not I will give my opinion. I know this sounds "wild," have you been tested for STD's recently? Had blood work drawn for HIV and Syphillis? If not, I recommend you go. Check out your local health department. Have them check you for STD's. Most states provides this to the people who live in that state and it is usually completely free most times/most states. You would need to call your local health department to obtain your options. So you will know exactly what services they offer in an STD check. It varies from state to state. A raised bump on the tongue can be an indication of syphilis. The hand involvement makes me lean more to this. This sexually transmitted disease causes a small bumps to form on the area where the bacteria entered the body (oral sex), which can include the tongue. The first bumps are painless, but later outbreaks are more painful and uncomfortable cause tender wart-like bumps to form on the tongue and mouth. Penicillin is the preferred form of treatment for syphilis, in a very large dose. In its early stages, this drug can cure the condition. Long term untreated is extremely hard to get treated. Do not wait any longer, seek medical treatment. If it is Syphillis, it is very serious. Ultimate consequence-DEATH! Long term, untreated Syphillis leads to severe neurological complications, problems with brain, nerves, spine, and more; all of which most times the damage is not repairable, just the disease itself.

Good luck with the entire situation! Will keep my fingers crossed and hoping for the absolute best!
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Old 06-17-2013, 11:25 AM
 
1 posts, read 2,862 times
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Default Question

Quote:
Originally Posted by Sweetbottoms View Post
So I went to my rheumatologist today who said he doesn't seen any way I could have a connective tissue disease. He said he's done every test he can think of and he can't make the connection. They think I'm having an allergic food reaction specifically yeast/gluten . It makes sense and they said that a lot of autoimmune issues are caused by gluten problems. I SO hope this is it after 7 years of being deathly sick with no answer I've kinda lost hope and I can't even think to get my hopes up for this but I so want to badly.. So there's my update next step food test!
Hello, I was searching the net and found this post. I have been having the same sores on my tongue for a while now and have been very frustrated at my doctors' inability to make a diagnosis. I was wondering if you ever received a clear diagnosis and if you were able to resolve your issue.

Thank you very much for any help you can provide.
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Old 06-17-2013, 01:30 PM
 
Location: Windham County, VT
10,704 posts, read 5,188,827 times
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Just tossing this out there, I am not a medical professional in any way:
Could it be Coxsackie virus ? I've heard that it causes lesions in mouth & on body as well.
It probably isn't that, this was merely my one guess.
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