Possible Bechets? : Hello everyone. I have just... - Behçet's UK

Behçet's UK

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Possible Bechets?

caroline7 profile image
6 Replies

Hello everyone. I have just joined. I'm trying to get to the bottom of many symptoms. I've had shingle type symptoms with no rash. Firstly on face. Then on buttock and shin a few times. And now on my torso. No rash. It burns and clothing is uncomfortable.  I Have constant small mouth ulcers especially on my tongue. Had ulcers down below a couple of times that the doctor never got to the bottom of. Thought it was herpes but that came back negative. Ive had headaches. For years.  Have been found to be b12 and vit D deficient. Currently have shingles type pain on my back and popping ears. Had a possible stroke in 2011 leaving a tremor in my left arm and just had hysterectomy after diagnosis of Endo adenmyosis and CIN 3.  I'm just statue end of my tether because I'm never well. I have had something wrong everyday for the last 5 years. Thank you if you can help in anyway X 

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caroline7
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6 Replies

Hi caroline7, 

You do have some symptoms that are features of Behcets. The best thing do do is get a referral to a Consultant who has experience of diagnosing, managing and treating Behcets to rule it in or out. Whereabouts are you? If you stay in England your GP can refer you to one of the 3 Behcets Centres of Excellence ( it doesn't cost them anything as its nationally funded ). If you stay elsewhere in the UK then it's a bit more tricky to get a diagnosis. 

caroline7 profile image
caroline7 in reply to

Thanks.  I'm in Northern Ireland. Will speak to my GP. 

behcets.nhs.uk

BElgium8 profile image
BElgium8

I've had similar issues, no diagnosis. Shingles type symptoms intense nerve pain itching pins and needles burning sensation on my face sometimes scalp to toes on my shin a few times ... then it started down below my legs my buttocks it comes and goes and I have had ulcers and sores in my mouth and genitals.  I've been tested for herpes as well ... kept coming back negative but I'm not convinced due to chronic itching burning sensations and those sores&ulcers down below and buttocks. I'm no help but ur not alone. 

nurse_ratchet profile image
nurse_ratchet in reply to BElgium8

I definitely have BD, but have experience that 'skin burns and hurts' withought any visible rash, redness etc. Hurts to touch or when clothes rub against the area: arms, legs mostly. I just think to myself that there might be inflammation and the nerves are protesting?

Better luck to you:)

Gen

BElgium8 profile image
BElgium8 in reply to nurse_ratchet

Sounds like nerve damage for sure. :/ 

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