Behcet's Syndrome Society
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Could be Behcet's. What do you guys think?

Hi, since the start of last year. It has been the worst of my life. At the start of January. I was 25. Did not smoke, drink or do drugs. I also worked out 5 times a week (Cardio and weights). I had a great girlfriend and was really optimistic for the future. With career prospects looking good too.

But, something happened at the start of February. My leg muscles started twitching and pulling. I also started to experience burning sensations around my skin. My big toes also showed a slight tremor. This all happened pretty much overnight. I wasn't that scared at the time. I put it down to exercise fatigue. This was accompanied by constant mouth ulcurs (still get atleast 4 a month) and muscle weakness.

After two months with no sign of things stopping and brainfog symptoms creeping through. Plus, twitching spreading to my arm. I decided to go to my GP. I was given loads of blood tests. All came back normal. B12, folate, Iron, Ferritin, U&E. Thyroid function, vitamin D, full blood count and Copper. I was eventually diagnosed with BFS and basically sent packing without a follow up (no MRI or nerve tests).

Since the doctors appointments and bloodtests. I now have a constant ringing In my right ear and my eye has been bloodshot for three weeks. It also feels very strained. Mouth ulcurs never stop appearing either.

I live in the UK and every doctor just brushes me off as they have no idea what is going on. Feel like there is no hope to be honest.

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Ask for a rheumatologist referral it is usually them that end up finding out if it's betchets it took nearly 5/years for a diagnosis I've a great team now hopefully I may get some relief unfortunately I know there is no cure.but make the most of the good spells if you can I try even though there not frequent I have them

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Hi Alexr475

One thing that jumps out at me about your post is that you really need to see an Opthamologist as soon as possible for a ‘slit lamp’ examination. What is going on overall is anyone’s guess. However, Behçets isn’t out of the question and as such, any eye involvement needs to be investigated as potentially it could have implications for your eyesight.

Feel free to pm me any time if you have any specific questions or want to talk.

Kind regards,

Will.

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Hi Alex,

I also live in UK, my symptoms started at the age of 32, I was passed from pillar to post and changed so many DR’s because they had no diagnosis despite investigations.

After having suffered on my own for 7 yrs, I diagnosed myself and told my GP It may be Behcets I may be suffering from. My GP referred me to the Rheumologist who after conducting all the relevant tests confirmed a diagnosis of Behcets.

A referral to Rheumatology will be the best way forward, they will be able confirm if you have Behcets...

Hope you get your diagnosis soon.

Abby

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Sorry to hear you're having such a struggle to get treatment. Everybody on this forum has sadly had a similar experience! Keep on at your GP until you get a referral to rheumatology and definitely have your eye looked at. I have permanent damage in one eye from delaying treatment. Good luck.

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You can get a referral from GP or optician about your eye, or walk in centre. Make sure you do urgently. The referral is to the acute referral unit at the eye hospital. You should be seen in 24 hours. They will also help with your diagnosis of Behcets depending on what they find. I have now had 2 Neuro Ophthamologists diagnose inflammatory eye conditions in the last 3 weeks, both agree i have Behcet's eye, not the conditions I have been treated for, for 10 years. I have uveitis and now scleritis with secondary trabeculitis, which has thrown my pressure through the roof. The reason my diagnosis has probably been wrong all these years. That and my huge, health, optic nerve, well currently healthy, hanging on, probably like your, get it sorted fast please ;)

Yvonne :)

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As far as tremors and the burning feeling in leg, I know it sounds weird but I have same thing. For a long time it was attributed to my Behçet’s. I actually ended up becoming paralyzed through out my whole body frequently. Neurologists couldn’t figure out. My BD specialist finally mentioned silent migraines. They are often comorbid with BD. Turns out she was right. I have Hemiplegic migraines and migraine with brainstem aura. It causes tremors for me, Nerve pain and has even caused a lesion at my brainstem. Migraine isn’t a very good name for what it causes, for me it’s like a mini stroke every time it happens. Like neuro Behcet’s but I didn’t have the inflammation in my spinal fluid that is a BD hallmark.

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Thank you for your replies guys. If my eye is still bloodshot by Monday. I will go to a walk in doctors or make a appointment with my local opticians. If I am experiecing neurological problems. Would it be worth while to have a MRI? Beginning to get to the point where I might buy one privately.

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Hi Alex, if I were you I’d get a MRI. I’m waiting for one myself. It’s best to check as you’re having muscle twitching or tremors I guess they’re called. I’m in the pre official diagnosis stage and can’t wait for my opthamologist on June 4 and then the rheumatologist on June 26. It’ll be nice to have a diagnosis and know what exactly in my body is being affected. Hoping you get answers soon. Best of luck to you.

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Alex being blood shot, is not the only sign and with uveitis, its really important to act asap. Please don't end up like some of us on here. I am stuck with chronic uveitis and its friends, others have lost vision permanently. Eyes you do not leave :) Take pictures.

xx

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