I have had issues with BD for 12 years, including multi-organ and systemic complications, some of which are neurological - poor hearing, bladder issues, headache etcetera - but with no actual signs of problems coming up on brain scans.
Just wondering if anyone else has had neurological complaints, to do with the Central Nervous System while not having any clear presentation on brain scans? If so, have you been able to secure good treatment, and are you able to manage the NBD symptoms?
Thanks, Tim Short
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Hi, I just read an article that SPECT scans, and Blood flow tests ( Angiograms? Not sure of name of test.) SHOW GRAY MATTER LESIONS when MRI'S only show, white matter lesions. Further testing should be done.
This is important to detect DEMENTIAS and Early detection and treatments.
I was told I definitely have NB but it doesn't show up on the brain scans. During one particularly acute phase I was told I probably had hot spots (inflammation but no lesions). Have you seen a neurologist?
I've had 2 CT scans in past 10 years and 2 MRI's of the head during times of non stop migraines,vertigo,tinnitus,etc. Each time came back Normal. Discouraging because you can't get an explanation/cause to the neuro symptoms, but relieved there are no tumors,etc. I've had all of these symptoms on and off during flares in past 12 years, but have newer ones in past 1-2 yrs- bladder retention, carpal tunnel(diagnosed in both wrists), tennis elbow( was only on left but now both elbows!), discoloration of hands/feet along with extreme temperature changes(poor circulation) and I occasionally get the "slapped cheek" look, sometimes just one or both cheeks. I also developped high blood pressure out of the blue this past spring- not on prednisone at that time(or I would have blamed it on that), I'm not obese, don't drink or smoke, I eat well-so I am on pills now because I went fr 100/60 to 145/99 for 2+ months. I also have had a few episodes of racing heart rate- 140 beats per min! Feel like your heart's going to jump out of your chest, but it NEVER happens at the doctor's office,of course.My Dad and his mother both had high BP and both died suddenly in their sleep, ?stroke,?aneurysm...we aren't sure(my dad was only 60). I'm not sure if the BP is BD related or bad genes catching up with me early- but all these could be neuro. As frustrated as it can be, I've resorted to the fact that they may never see anything on my scans,but these symptoms you can't make up. So just treat the symptoms,is what we're left with,I guess?
Anybody have any other ideas?
Gen
P.s I was given oxybutinin for the bladder (doesnt help so I don't take it).
I take Clonidine for the BP- works well for me and back to normal.
Ask doctors to run SPECT and Angiograms. MRI's only show WHITE Matter lesions. The above tests show GRAY matter and other lesions that MRI's don't show. I just read several articles on this.
Cindy
P.S. I have Neuro-Behcet's and Frontal Lobe DEMENTIA now. I will ask for the above tests next visit to my neuro. I have an estimated 40 -70 White Matter, frontal lobe lesions - How many in gray matter, I don't know...
To all of you - putting neuro symptoms aside, have you all had some kind of positive test result for BD? e.g. bloods, pathergy, or did any of you get a diagnosis based on history and presenting symptoms?
I had a positive pathergy test done by dermatologist and bd confirmed also with rheumatologist and immunologist. I had private healthcare at the time luckily! Otherwise would probably still be going to GP telling me its stress!
Not really sure how to answer that. I was in hospital and consulted by at least two neurologists who said it was neurobehcets. Later on one of them said there were clinical signs to support the diagnosis.
My ESR, CRP were all positive/elevated as well markers for autoimmune (lupus), but the one that was convincing was HLA-B51.
This one is directly related to BD, however they say most non- middle eastern people will not be carriers of this gene. I'm caucasian and of European descent living in Canada.
Does that answer you question?
Do you test positive for any off the above? Initially they were diagnosing me based on my symptoms.
Thx
Gen
Thanks. Gen, I was diagnosed on history and presenting symptoms originally, my tests tend to come back negative. I have HLA antibodies but don't know if that is of any significance.
Lesley, I ask because you know it's a bugbear of mine that some patients are told they have neuro BD or BD with neuro symptoms regardless of test results, or even without tests, but others are told it is neither of those - it would be nice if there was some consistency!
No one has ever breathed the words neuro BD around me even thpugh some of these symptoms throughout the years are CNS related. If I've ever brought it up, they try to blame the symptoms as side-effects of the meds. I don't think anyone wants to touch that term neuro BD, around here anyway, unless something severe is going on. I'm one of 5 people that have BD in this province. As little they know about BD,they know even less about neuro BD and diagnostics.
I had my BD diagnosis 2 years ago. I was pregnant so the traditional symptoms were skewed slightly and I wasn't allowed meds. Last year I had a 6 month flare which was severe. I developed NBD symptoms; strange flu like sensation, memory fog, motion sickness, tremors, headaches, nausea and loss of balance. Was awful. I was pretty frightened about where it was heading.
I was on Prednisolone. That brought its own misery. I tapered off the steroids and started taking Azathioprine. It changed my life. No exaggeration. All the NBD type symptoms are under control now. Just as well- it would have been impossible for me to continue to practice as a lawyer.
Another welcome effect was a massive reduction in the urinary tract/pain issues which have plagued me for a decade.
I had CTs, MRIs etc. Nothing of significance showed up at those times. However, my 3 Consultants were all in agreement that it's NBD.
I was interested in your post. I was diagnosed with Neuro Bechets in September last and I'm also a lawyer. I haven't returned to work yet but I just wonder how you find it generally? From your post it would seem this diagnosis is not affecting your work? I am 35 now, suffered from mouth ulcers/folliculitus over the years but didn't receive a diagnosis of NBD until I suffered a brain clot in September. Would be interested to hear from you-many thanks.
I suspect my BD started in 2004, but was diagnosed in 2012.
Last year was by far the worst flare I've encountered; 6 months of misery. The neuro symptoms were debilitating. Often my speech was so bad (or, at least, it was in my mind) that I felt self conscious. The brain fog was pretty shocking too. I decided to stop seeing clients at that point.
I had to reassess. I had a 6 month old and a 3 year old and a full time job as a lawyer. Luckily I'm a partner so could adjust my working hours.
BD does affect me massively at work. I used to be able to put in 12 hour days regularly but that seems like a distant memory to me now. Aza helped me enormously. I felt like myself and was happy to meet clients again.
I had major surgery in August this year and the recovery has been much harder than expected. I am only working reduced hours for now until I get stronger again. Was hospitalised again last week and flew to the UK for another round of MRI and x-rays.
Back at work though this week trying to do what I can.
I have learned over the last two years that I really need to listen to my body and "down tools" at work when necessary.
I'm sorry to hear that you have been so poorly yourself. I hope things get better for you.
Thank you for your honest reply. I'm really sorry to hear that you've been so unwell. It is early days for me yet and I am naturally concerned about future flare ups. I can totally understand that the 12 hour days would no longer probably be possible or wise. I work inhouse so I might be able to get around this. I admire you having 2 children to look after also- I don't have any children myself. I wish you all the very best with your recovery going fireweed and thanks again for reply. Mary.
Reduced hours might be the way forward. I worked part time for several years as I had to, but am now back to full. No kids like. Hope it all goes well for you. Look after yourself. Tim
Sorry for the delay mtmunster. I am doing okay. I have never had clear neuro diagnosed but suffer from a lot of what might be called secondary neuro symptoms that do not come up on scans but do exist in reality. I struggled six years to work, and then at 30 I found a good balance of drugs that settled me down. I also gave up alcohol at 30 which I believe has helped significantly. You keep healthy? Tim
Hello folks. No definitive pathergy tests, just all the other usual stuff, HLA-151 etcetera.
I have had issues with BP too, which is interesting. Seems that there is a lot of commonality and shared experience of BD that are not always represented in the literature.
Never seen a neurologist, but mainly a rheumy and eye people. My Neuro problems have never been acute, but persistent and difficult.
Onwards and upwards. Tim
Hi, a bit of forum housekeeping - I've just realised this is not a private thread, I recommend that you don't give out any personal information such as contact details, as this can be read by anyone, anywhere.
Hi Tigerfeet! I got caught up in the back and forth that i didn't notice the original post wasn't one with that lock sign. That's what u meant i believe? I deleted as soon as i realized!
I have n-bd. I recently read an article that addressed best imaging for n-bd. First, GRAY matter can have lesions, as much or more than White matter. MRI's focus on white matter, C.T. and other scans see more of the gray matter.
Second, there is a third type of Neuro-Behcets, "Vasculo Behcets", that is more like Mini Strokes. It is suggested that a test be done that shows BLOOD FLOW in the brain. (Angiogram? Not sure what it is called. But, it shows ALL the blood vessels and if there is decreased blood flow or blockages. It looks like spider webs on film.)
I have an estimated 40 - 70 "Punctate", (Pencil point size) lesions in my frontal lobe white matter and the largest one is about 9mm.
I am starting with "White matter DEMENTIA - (ALL Executive skills are impaired!) I can't spell words I know, Lost my Organizational Skills, my Apt. is a wreck! I don't shower - and I don't know why. I aspirate food and liquids, weight gain, etc., etc. I also have ANEMIA OF CHRONIC DISEASE, I am dependent on Blood Transfusions or Iron Infusions to keep my hemoglobin up. ( I am getting ready to end my life, by stopping any and all of the of the above treatments.)
I am 64 and terribly ill from the Progressive Neuro-Behcets, in constant, severe pain (that Oxycodone and muscle relaxers don't touch) and on Oxygen for breathing problems. ( I also have 3 other genetic diseases. I tell my doctors - I did not get a "Gene Pool", I got a "Cess pool".) There are no doctors to help me in this small town. At the E.R., when I tell the doctors I have Neuro-Behcets - The doctors ask ME, "What is it?" "What does it do?" and "How do you spell that?" They run to "Google" it. You can not find much - unless you do hours of research. I have literally spent thousands of hours researching this "Devil Disease".
Insist your doctors send you to a big, teaching hospital, for a second opinion! When doctors ask YOU "what is it?" You need to find HELP somewhere else FAST!!!
The inflammation is not now or ever been controlled and is destroying me. I have had 2 Pulmonary Embolisms that formed in my lungs. Stage 3 Kidney failure, Constant eye pain from Optic Neuritis and Trigeminal Neuralgia, and 4 broken pelvic bones from a ground level fall in my walker, from the prednisone. The list goes on and on.
I am too sick to keep going. I have some things I need to do before I quit treatment, then, I am done. I am a "dnr"( do not resuscitate) and I am doing whole body donation (MEDCURE.ORG) to further research on this disease.
I am not telling all of this to scare anyone, or complain, but so all of you know what can happen. I hope all of you GET TREATMENT - stay on your doctors to treat your disease! Neutrophils on a C. B. C. test will be up before or during a flare. Learn to read your own labs. and know what it means.
I hope this answered your questions and educates you and others to get treated, before all of this happens to you.
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