Behcet's Syndrome Society
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37yrs Till Diagnoses

Hi,

this is my first post to the Bahcets Syndrome Society. I've only recently been diagnosed with Bahcets Disease.

Ive been ill since I can remember. Since the age of roughly 5yrs I've been plagued with recurring ENT problems. Tonsillitis , ear infections, asthma , mouth ulcers, and 'growing pains'. The thing is I'm 42yrs old now, and still have the same problems. Then through my teens the mouth ulcers multiplied, so much in fact they they would create one huge canker sore.

I had my first outbreak of bright red slightly raised lesions over my arms, torso, and legs around 19yrs of age. No doctor new what they were. They took months to disappear. They never effect my face at all.

The mouth ulcers continued as standard. Then from nowhere a couple of years later, the red lesions appeared again. Once more there was no diagnosis or connection between the symptoms. I found I was always tired. The body aches and fatigue were always lurking in the background. Then in my early twenties I started to developed jaw ache and neck pain. My lymph nodes in my neck exploded in size.

Then suddenly I developed a huge, agonising lump on the right side of my neck.

It was huge. Larger than a tennis ball. Hard as a rock. I was hospitalised for two weeks on IV antibiotics. The lump receded. No one knew what it was.

All the other symptoms continued, as did the cycle.

In my 20's I developed chronic reflux disease, Stomach bloating and IBS symptoms. I have them till this very day.

7yrs ago my jaw really started hurting, particularly the right. The same side as the lump had many years prior, and my right ear totally clogged up (glue ear), and I started to lose my hearing. Ive had around 6 grommets throughout my life in my right ear.

3yrs ago I had to stop working due to joint pain. My shoulder, scapula, neck, jaw, and lower back became excruciating.

Ive had multiple surgeries, both knees, both shoulders, Colon (4 Sessile Polyps), Stomach (Fundoplication for grade 2 oesophagitis), throat (tonsils and adenoids removed), jaw (bilateral open jaw surgery for bone spurs, a rare benign bone tumor, and disc displacement without reduction bilaterally, and degeneration)....you get the picture. The list goes on.

I developed large lesions/ulcers on my buttocks and back of thighs. And blind lesions on my shins. Bilateral hand, knee, and foot swelling, plantar fasciitis, along with fungal infections and multiple Strep throat infections.

Ive developed depression, anxiety, and some neurological problems too.

I could go on and on, and on.

Has anyone else had a similar development of symptoms?

9 Replies
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Hi Dev

I sorry to hear tou are shffering. I am glad you joing the group. I am experienced all the all the same symptoms, plus some. Except the lump im the neck. May I ask have you start a medication sequence with your rheumatologist?

Have ypu tried a combo of FODMAP and anti- inflammatory nutrition plan to help with your symptoms?

Keep reaching out to us:) I hope you find some relief soon.

:)!ash

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Hi Ash,

I feel your pain. Its sucks BIG TIME!.

My Rheumatologist at Chelsea & Westminster Hospital is reluctant to treat me due to the vast extent of my symptoms. He says I need immunosuppressive drugs, antibiotics etc, and must be monitored closely. He cannot offer that as I see him once every 3 months.

I have been referred to the Royal London Hospital to the Bahcets Centre of Excellence by my Rheumatologist. September 15th is my first appointment.

My Rheumatologist gave me a steroid injection 3 weeks ago. Which helped a little. But not much.

I'm on a regular low dose of aspirin to help with circulation which has had a slight positive effect. Especially with my foot pains, and getting out of bed.

Just today have a new eye lesion. I'm seeing my GP tomorrow.

For now it's just a waiting game 😭

Thank you for your response. I feel slightly less alone since joining this organisation

Best of luck 🍀 Ash

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Dev I am so sorry you have wait so long 😢 I wish I could help. If you need some homopathic suggestions to help in the meantime, let know. But, yes nothing compares to meds. Oh! Take pictures! This sounds odd, but it helps the doctors. Along with a simple daily diary of symptoms.

We are here for you xoxoxo

Ash

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Thanks Ash,

I've been taking lots of pics over the past two years. Ive got plenty if material to show the consultants. But good advice all the same.

Ive been advised by my stomach surgeon to discard NSAIDS like Naproxin. As I'm sure you know, are really bad for the gut.

I take a shot of crushed black peppercorn, and turmeric nightly as an anti-inflamatory.

The peppercorn aids absorption of the tumeric.

I drink plenty of water. My Achillis heal is sugar. Its the hardcore fatigue that does it.

I use fresh ginger for my reflux.

I'm fully open to any advice on diets and homeopathy medicines.

Thanks for your time and support 😁

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Good grief....I am so sorry. I have symptoms no where near as bad as yours. I won't bore with my history, but have you been given long term medication? I take Azathioprine - 150mg daily for ever. It has worked on my most concerning symptom - sight loss in one eye - but I still have other symptoms - but I can live with these as they are. If you can, see a rheumatologist as soon as possible - you don't say where in the world you are. If its the UK then there are centres of excellence in Birmingham and Liverpool and I think there is a 3rd. I sincerely wish you the best of luck and hope you get relief and soon. Keep posting. x

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Thank you for your reply and pointers. I am in the UK. In London.

I have been referred to the Royal London Hospital to the Bahcets Centre of Excellence by my Rheumatologist. September 15th is D Day for me. Its been a three month wait so far 🤒

Cannot wait to see them.

I'm glad your symptoms are managed now.

Do take care 😁

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Oh and no experience is a boring experience. We can all help each other combat this condition.

Do share your Bahcets journey with me 👍

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I know this is quite controversial; but have you tried smoking? Cleared up my mouth and throat ulcers in a week.

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As a heavy smoker who can't quit I would suggest vaping as a possibility for a safer alternative to serve the same purpose. It would still create a nicotine addiction though.

From the articles and medical journal I've read the hypothesis as to why this is effective is that cigarette smoke contains so many harsh chemicals it keeps your immune system busy fighting off the assault. So basically smoking is so bad for you your body is too busy trying to repair smoking damage then to bother erupting with oral ulcers. Not a very good alternative at all.

I'm wondering if I had the BRAO and retinal vasculitis but only now have one mouth ulcer because of my cigarette smoking. If this is true then my smoking is preventing me from getting a diagnosis and needed treatment.

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