Need a help : Hai every body hoping all to be in... - Behçet's UK

Behçet's UK

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Need a help

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Hai every body hoping all to be in the best health ever

I just wander! Iam not diagnosed yet but have 2 symptoms Tha not fullfil the criteria of behcet since one year

I have upper inner lip ulcer that not painful just erosion without pain eating easily without annoying but tend to reccur every 4 days for 4 months 😩

And acne like on my chin.. Bumps with pus on my chest arms and upperback not painful or itchy my hair also loss

I don't experience any other symptoms

Just need your help if anyone have these and get diagnosed?

All my blood test is normal also

Thanks advance

12 Replies

I have both of those things happen as well and normal blood tests. My hair loss is so bad, it clogs my vacuum and my shower. The acne-type bumps on chin, neck, back, stomach, and chest, often filled with pus, happen very often as well. Sometimes they take a month to go away and sometimes they scar.

Hidden
Hidden in reply to Frogge

Only these 2 symptoms you experience?

Frogge
Frogge in reply to Hidden

No. I get mouth ulcers about 4 to 6 times a year. I get genital ulcers once or twice a year. I have pretty severe joint pain and very bad muscle pain almost all. The. Time. I also have intestinal issues every week to two weeks. My ankles and legs swell often and my one foot hurts a lot to walk on, especially if I have to wear shoes for more than an hour or two. I also have severe migraines at least weekly. My eyes ache most of the time and are very dry. I also have venous sinus thrombosis... Basically blood clots in the veins in my brain which almost cost me my sight. But are doing great now. I also have pain inside my spine from too much spinal fluid building sometimes. On meds that help with that, but not perfect at all. It took them 15 years to figure out I had behcets. Finally I had a doctor that looked at all my symptoms and realized what was going on. I also have hypopituitarism, hypothyroidism, irritable bowel syndrome, and fibromyalgia.

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Hidden in reply to Frogge

Iam sorry for asking and make u remember theses diffucult momentsJust I also don't know what I have..

Sorry My last question is theses symptoms come with each other or taking years between each?

Frogge
Frogge in reply to Hidden

They started with migraines and mouth sores when I was 8., joint issues at 20 after I had my first child, and then blood clots in brain and eye issues at 31, genital sores at 35, muscle pain at 38, everything else at around 38-40, with each thing adding to the next.

None of my blood tests provided answers to Behcet's it was my symptoms that confirmed this for my consultants.

In the meantime have a look at your diet, start removing food groups to see if you get any improvements, remove all refined carbohydrates, bread, pasta, pastry, cakes etc etc. For a month, take a look at what sugary products you eat and drink, even some fresh fruits I have a problem with.

Rinse your mouth every time you have eaten with fresh water.

Frogge
Frogge in reply to gillianTS

Gillian, this is a good idea. I became lactose intolerant about 8 years after my other symptoms started.

lesleyg
lesleyg in reply to Frogge

Hi Suzy I know my neutrophils in blood tests were high, but I was an inpatient and one day a specialist came in and said they were questioning my diagnosis, then they took a couple of biopsies from skin lesions and came back in and said I had neutrophils in my lesions and this confirmed Behçet’s.

Hi Lesley, I was interested in your reply regarding neutrophils. I have been told I have symptoms like betchets, but nothing fully diagnosed yet. How do the neutrophils help with the diagnosis?

Thanks Suzy

lesleyg
lesleyg in reply to Suzywhizzo

I know my neutrophils in blood tests were high, but I was an inpatient and one day a specialist came in and said they were questioning my diagnosis, then they took a couple of biopsies from skin lesions and came back in and said I had neutrophils in my skin and this confirmed Behçet’s.

Suzywhizzo
Suzywhizzo in reply to lesleyg

Thank you, that is very helpful. Take care x

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Esr and crp were also normal?

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