Undiagnosable symptoms - HELP!

[lauren34]

I am 21 years old and for the past 3 years have been suffering from episodes of an undiagnosable illness. My symptoms are: severe ulcers in my mouth, esophagus (only once), and vaginal area (not every time). Most of my episodes consist of only severe ulcers in my mouth to the point where I cannot eat solid foods. These episodes occur randomly and are not consistently spread out. I was once hospitalized because my mouth was so bad. I have been seeing a rheumatologist but he has no answers for me as to why these episodes keep occurring. I have been tested for everything possible and everything came back negative. I am now trying a gluten free diet to see if this is a result of an allergic reaction. Does anyone have any suggestions as to how I can try to figure out what this is or prevent my episodes from reoccurring? I am desperate for answers! Please help!

[thyroidian]

Hi Lauren.
Dont be embarrassed, because its nothing to be embarrassed about, but i know how you feel.
I have been plagued with rashes, blisters, ulcers, bruising, for 15 years, in some embarrassing areas myself, and was told i have shingles, herpes1, to name but a few,I was even given prophalaxis anti-viral drugs everyday for 2 years, to be told at a later date i didnt have herpes simplex1.
So right now im in the same boat as yourself, in limboland with rashes, ulcers, and blisters with no diagnosis.
I do believe what i have is a form of vasculitis, which causes rashes, but may be a possibility of Lupus. I am yet to be told, but im waiting for a referral to a immunologist.


Right you say your rheumatologist tested you for Bechets, there is no persific test for Bechets, did your rheumatologist do the needle test on you,?

Were by he stuck a needle into your skin, and you have to go back between 24-48 hours to see if the site is raised, or with redness?
If your rheumatologist didnt do this test, then he cant be sure you havent got Bechets.
Bechets is very difficult to diagnose, and the best way to find out is the needle test, but this is not 100% accurate also.

I hope this gives you some insite , and maybe if your rheumatologist hasnt done the needle test then maybe you could ask for this to be done.
As for a diagnosis for Bechets, they say you need the oral blisters 3 times a year or more, and you fit this criteria.

Good luck, if you need anymore help just give us a shout.

I didnt know when i said the p***k test i would offend anyone it is a well known test, and i wouldnt have said it if i was going to offend anyone, that is why i have now had to term it the needle test.
Sorry to offend
Nicola

[Chkls]

Hi lauren, I'm 25, and was diagnosed with lupus 7 years ago. My last serious flare which almost killed me began with symptoms like yours. Same story too, no one knew what the problem was, or even if the symptoms were related to the lupus flare.
After a year of total misery I decided to take responsibility for my health and dug deep, researching any and every possible solution. I learned a lot, and after working at it for about 3 months I started to see improvement and was able to come off the 20 or so meds I was prescribed. I haven't had even one symptom of lupus since, it's been 5 years. Here is the deal, no matter what the problem is, or isn't the solution is the same. 1. You need to do a hardcore cleanse 2. Adopt a healthy whole food diet 3. Test for allergens 4. Take 2 basic supplents a day, which include a whole food multi vitamin, and a good anti-oXident.

Your body will heal, if you give it what it needs, and eliminate the toxins that are stressing your immune system.

If you want any specific recommendations for cleanses or supplements, let me know!
  

[lauren34]

Thank you so much for responding. It means a lot.

I am kind of embarrassed but I don't know what you mean when you say the *****test. My rheumy has ruled out bechets, lupus and herpes (to name some of the big names). I have gone a full year and more with no signs of ulcers and then this summer I have had at least 3 episodes - some worse than others. I have had exploratory surgery done and they found nothing except one tiny ulcer in my esophagus. I have not had any immune system testing or allergy testing. I hope some of this information helps you.

Thanks again for your time,

Lauren

[thyroidian]

Hi Lauren.
Well on reading your post. I would like to ask you have you had the ***** test done for BECHETS.
This is an auto-immune disease which causes mouth ulcers and vaginal ulcers,
Bechets is very hard to diagnose because there is no persific test to diagnose this condition, that is why they use the ***** test.
Also the ***** test can not work for everyone.
Do you have mouth ulcers more than 3 times a year?

You say your rheumy as tested you for everything, may i ask you like what, just so i can try and help.
Have you had any immune system testing?

I hope this is off some help to you, and if i can help you more just give us a shout.
Take care

Nicola