Behcet's Syndrome Society
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Never Diagnosed

Hello im new to this well my journey started back in 2008 when i got a horrible bout of mouth sores inside my mouth i would say almost 100 at a time. Then out of the blue one day i get this very bad stomach cramp like someone was grabbing my insides couldnt breath needed air went to bathroom vomiting and stool that looks black almost it happen several times then stopped i saw 5 drs tested for hiv herpes all negative none could say what was happening. So for years to come i would go into remission for awhile the the mouth sores would show back up they stopped looking like canker sores and started looking like weird shapes im also in south Carolina im convinced none of our drs here have any knowledge of this and its bad started getting flare ups again of mouth sores towards the end of 2016 they would come and go then im currently having a flare now with horrible mouth sores muscle aches my eyes have been burning and itching for no reason on and off it just wont stop i have had it with these mouth sores

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Welcome 😊 female from NY here. I would suggest making an appointment with a Rheumatologist. That is who diagnosed me. Document all your symptoms and issues. If they don’t listen, go onto the next until you find one that does. Good luck!

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Ace0320 took all my lines!

29 F Baltimore md here. Google a rheumatologist. Look up the reviews. Find one that listens. You also need to find a good gastro for the bloody stools. that is not good.

In the mean time, lidocaine/chloroseptic solutions can help with the mouth. Also there's a prescription called "magic mouthwash" that's supposed to help oral ulcers. there is also a disease that mimics behcets, but has different shaped lesions in the mouth, called pemphigus vulgaris. This is diagnosed off a biopsy.

As for general well being, regardless of if its behcets or not:

1, Drink water. Drink ONLY water. A LOT OF IT. like 100oz a day.

2. Sleep. Get all the sleep. Actual sleep. Not netflix or diddle on phone.

3. Cut all processed foods and sugars from your diet right now. That means FISH/ Meat. Fat. Vegetable. Is it fun? NO. DO IT.

document all symptoms, with dates. and take photos. write down all meds.

Keep us posted, we are here for you! xoxo

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Rooser1 took all my lines. .

I have pemphigus vulgaris .. initial diagnosis is through a blood test for autoimmune disease.. they checked for desmoglein 1 and 3 values .. confirmed through a biopsy of oral or skin blister .. if the oral ulcers are not treated they could transmit to the digestive system ..

for me they diagnosed just as it spread to the oesophagus .. after using prednisone the oral ulcers receded and they say the ones in oesophagus are healing ..

Involvement of eyes is rare but since u had multiple flare-ups it adds up ..as far as I have heard .. for patients with pemphigus vulgaris .. the retina and visual nerves itself are not effected .. there will be a layer of mucous membrane between eye lids and the outermost part of eyes, cornia .. which causes blurriness

Hope this helps .. good luck with diagnosis

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since you are not diagnosed yet, this info might be of interest ... for one of the tests they took a biopsy from my mouth ulcers (i had multiple ulcers in mouth and in the end my mouth became like a pudding, touch anything and it tears etc ..) .. from this biopsy they said it could be pemphigus vulgaris or Morbus bechcet or Wegener or Lichen planus ruber .. sorry i dont have any info about the last 2 but it might be helpful to know a little about them for your diagnosis ..

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Welcome as well. Keep a lot of documentation. Pictures. Dates. Times. And some stop until you find a doctor who gets in and treats you. Getting a diagnosis can be really difficult. These diseases are super tricky and have overlap and mimic each other quite a bit. I was diagnosed with this, that and the other. Sorry you are suffering.

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