Neuro Beçhets and Meningitis: I was diagnosed... - Behçet's UK

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Neuro Beçhets and Meningitis

crap_dalmation profile image

I was diagnosed with Neuro-Beçhets last October after several years of misdiagnosis of ME, then MS, before finally the Beçhets.

I got brought into the Royal Free last week (still here) with what they think May be a type of meningitis. I had the sensation of a stiff neck, hated any lights, vomiting, very bad headache among other symptoms. One of these was severe chest pain.

They did a lumbar puncture after 4 days of me being on IV Antibiotics and Antivirals, and told me the fluid only contained a couple of white cells.

Today I had an echocardiogram which came back ok.

So I guess I have a few questions for fellow BD sufferers, or anyone who may know:

1) Has anyone else on here had a type of meningitis? How was it diagnosed?

2) Was it related to your Beçhets, or was it from being on immunosuppressants?

3) Would a spinal fluid come back pretty much clear after just a few days of antibiotic and antiviral treatments? Would it come back clear anyway?

4) Does anyone else here suffer with bouts of severe crushing chest pain? If so, how do you cope with it? Have you had any answers as to what is causing it?

Just curious really. It's nice to feel less alone with these things!

CD xx

18 Replies


Aseptic Meningitis is a known possibility with Behcets - and like most other things with BD it is diagnosed by excluding everything else

With the chest it could be Costochondritis - inflammation of the cartilage in your ribs

BD is indeed a bloody awful disease

Amanda x

Thanks Amanda. I hadn't thought about Costochondritis. May be worth me asking the docs when they next on their rounds!

CD - Sam x

agree about the costochondritis- i had that a few times, but was sure it was from coughing so hard from bronchitis.

1. I have had meningitis every year since i was 17, more predominately around exam times, so twice a year. Each year it would get less and less intense.

It was diagnosed as "viral" as the dr's ruled out bacterial when I was 17. I did not have a spinal tap as they said that would cause more pain. I now only get a very stiff neck and its only when I am very stressed out.

2. Definitely BD related as I just started meds a few years ago.

3. n/a

4. I am very prone to bronchitis. I think that's about as near to this question as I can get.

I was never officially diagnosed with NBD, my doc said that spinal tap is sort of the definitive test because of the fluid composition... but I never hear of hardly anyone else getting the meningitis like me.

Hi, I had meningitis 12 years ago. The hospital Dr forgot to do a lumber puncture and I had the Dr being given a severe telling off by the consultant right in front of me. My sight and hearing were affected badly at the time, but it was only years when behcets was diagnosed within everything else I've got, that behcets was to blamed for the meningitis. I also had crushing chest pains in the months leading up to a bout of pneumonia and when they eventually did a heart scan they found it was Peri carditis. Fluid around the heart. It was incredibly painful. I hope you get a diagnosis soon as I know how awful the pain is . Sleeping was scary and difficult and I could only lay on my left side as the pain intensified if I laid on my right. Best wishes to you xx

Ps. I have polychondritis and costo chondritis

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I had aseptic meningitis about twice a year for 13 years, though not for the last year. It was attributed to BD originally but now it's been decided that they don't really know what it is. I've had LP's, only one came back with minor changes, I think it was blood in the fluid, but not significant enough to confirm anything. Treatment is usually steroids and antibiotics, the latter being a precaution and not because of infection.

Thanks so much for the replies. Finally been discharged and now at home recovering. (well, as much as you can with three kids! lol)

It's so frustrating when an official diagnosis proves elusive. I feel for you rooser. Also frustrating when things get overlooked by docs. Especially when the consultant has asked for specific things to be done and they don't do them!

Janh, def think I have the same as you, as I am having the same pain you described!

They sent me home with gaviscon saying it was probably gastrointestinal. Doesn't feel like that though!

Best wishes to you all. xx

Hi You,

three years ago I had a meningitis, it was terrible cause I didn't understant what happened. Fortunately I had a girl who loved me and she knew the pathological implication of my disease.

I was like a mad, everyone cried I feel myself responsible of ther pain.

The neurologist estimates the presence of a meningitis when you don't know who you are and where you are. I was not Marco I was Napoleone Buonaparte on his own horse.

But they can go deeply doing an exam to the CEREBRAL LIQUOR in the holy bone in the back. If there are more than a certain number oF cells they know there's an encefalitis. They can also do an Magnetic Nuclear Resonance to see the development of the disease.

I suggest you to be not alone, stay together with someone that knows and loves you cause you can fall down losing completely your minding.

Encefalitis is a terrible experience I was verbally violent and dangerour. I became fatter and fatter each week cause I was cared with cortisone (1 gr per day)

The girl that loved me leave me alone cause I'm changed. She said you're not the ancient Marco. You're another man. I want you no more.

Stay quiet.

I wish you a peaceful life.


crap_dalmation profile image
crap_dalmation in reply to maxpu

Sorry to hear that. Luckily my bloke is still with me despite the many problems. Anyone who truly loves you accepts you, warts and all!

Best wishes,


Hi, I'm greg and a bd maybe nbd sufferer all my life.

I'm a little different then most of what I've been reading from all of u in that I don't think doctors are really that necessary. There is no cure for behcets and pretty much all the meds they put us on only treat and cause unrelated problems. I always say to people and my doctors it's not bd that going to kill me it's all the meds I take. (very toxic ). As anyone been put on moia's (psych drugs) not necessary because it inflammatory not mental. Any woo I've been doing a lot of reading about nbd and I came across polymyophthy-not sure of spelling- which is peripheral nervous system problem that comes from a type of minigitis and ensephlitis but with out getting to deep. It's more than likely where our bladder problems come from and dose anyone like me get tingling, numbness, pins and needles in limb or dizziness or headrush when standing. Do you or anyone take iron, I do cause I'm anemic and doc said it was dew to my bd but have never read anything that say that.i hope this helpful for u.

Hi Why...

I have read that anemia and leukocytosis (high white blood cell count) has been associated with Behcet's. I've had both of these issues all my life. I remember so many times - way before my diagnoses - doctors telling me that my white cell count was quite high when I had no apparent infection, and I have always been anemic. I had to take iron supplements before two operations recently, and they barely seemed to make a difference in raising my iron count.

I have recently been having a lot of numbness and tingling in my hands, feet, and just numbness on the left side of my face, just on the cheek , half way up the nose and down to my top lip. Hate it!!! Yes also to the dizziness, but not so much the head rush when standing up.

While I agree the meds are sometimes bad, and I have at times gone off them, sometimes there is no choice. If I hadn't taken masses of steroids and anti-inflammatories when I had 2cm of fluid around my heart, I probably would have had heart failure. I could say the same for all my severe flare-ups when I really thought I was going to die. I guess it depends on whether the severity of the condition or the side-effects win out.


When I had Pericarditis I had a number of different types of chest pain - depending on the severity of the episode. I did have a crushing sensation when I went from a sitting down to laying down. The pain wasn't so bad sitting up. Also bending right down to the floor would produce a kind of forward-crushing feeling.

Steroids and anti-inflammatories until symptoms resolved. Also lots of painkillers, although in the main when I have had severe pain, most pain killers haven't really helped much. To tell the truth - and many might disagree - I find crying really helps. I cry as much as I need, and I won't let nurses to tell me it's not good, or to cheer up... I don't think I'm feeling sorry for myself - I thin tears are a response to trauma and helps healing.

Hope you are not in pain now.

Sorry you had so much pai with yours. I think you are right. Crying is a natural response to pain. Listen to what you and your body need. It's your body and your illness, not theirs!

Sorry if I implied I never take meds. I try not to but if the pain and swelling are so bad I'm in a wheelchair I cannot get on them fast enough. I just go natural during times of remission. I also know all about halving to sit up when sleeping, I remember how frighten I felt the pain so bad u can hardly breath. As anyone gotten bloody noses with clots for no reason cause I have. I was reading that it has to do with a sinus cavity or something. I take iron everyday up to125 mg doctor prescribed. But I try with food for some of it.


I had meningitis after my third Remicade infusion. Although, it lessened my pain, I began to experience headache and nausea and then severe nausea and vomiting. My spinal fluid was cloudy with blood. I had to stop the infusions. I hope this helps.

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I have had iron deficient anaemia since 1985. I had blood transfusions up to 2006 when it stopped. It returned again last year and treatment options are currently being considered. I am told it is not connected to BD but no one knows the cause.

I haven't had full-blown meningitis but I experienced similar symptoms - extreme headache located at the back of the head with stiff neck, difficulty staying awake / alert, nausea. It occurred after I stopped Copaxone (MS treatment) and after 1 injection of methylprednisolone 125 mg. I had an MRI while in hospital which showed no new lesions compared to previous ones and no inflammation, so no real meningitis diagnosis. I was given NSAIDs by IV and put on colchicine and diclofenac afterwards which helped.

Re your question no 2) - I tend to agree with whycrazyman that the meds given for this condition may sometimes cause more than harm than good. My theory is that any drug suppressing the immune system has the potential of going both ways - it can help suppressing the symptoms on shorter term, but in the longer term the med can cause the immune system to respond to it by producing more inflammation. Why else would meds that worked at the beginning stop working after a while?

Thirdly - I had a spinal tap in 2013 after my first flare. It showed nothing except oligoclonal bands (an MS feature hence the Copaxone) - no raised proteins which is supposed to be a sign of neuro BD inflammation. So not sure how helpful the spinal tap is. Interestingly, after the spinal tap I had 2 weeks of very bad headaches, completely bed ridden, which went away only after taking methylprednisolone. Not sure if the result would also be negative after taking antibiotics and antivirals. In principle I don't think so as the inflammation in BD is supposed to have no identifiable cause (i.e. viruses/ bacteria). So it should be positive regardless in theory. But really, who knows? The immune system is still a mystery.

Take care,


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