Communauté La maladie de Behçet

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martacampabadal
modérateur

Evidence-based practice in Behçet’s disease: identifying areas of unmet need for 2014

This is the first study to investigate trends in published literature for management of BD over time. It identifies neurological, cardiovascular and gastro-intestinal disease as particular areas of unmet need and suggests that overall quality of evidence is declining. Future research should be designed to address these areas of insufficiency to facilitate evidence-based practice in BD.

Full article access: http://www.ojrd.com/content/9/1/16

pain management

I seem to be in a flare of my Behcets and am experiencing so much pain, especially at night. During the day I keep my pain medication levels down with the use of therapy from my service dog, but at night the pain is unbearable. I cannot sleep. I have tried Ultram, Vicodin, and Percocet so far but none are helping. I am starting to experiment with combinations but wondered if anyone had any suggestions or anything that has worked for them?

I have been taking oxycodon, fentinayl patches, vitamin blends, and just recently started an antiinflammatory to help me get out of bed. I feel that the easy movement exercises I do help me manage the pain. I also do mind training to ensure that I have as much natural control as I can.

Females - Issues With Menstruation? Bladders?

I was recently diagnosed with Behcet's, and I'm having a hard time figuring out what symptoms can be attributed to the Behcet's, and which symptoms are unrelated.

Ever since I was 16 I've had horribly painful menstrual periods, and heavy bleeding. I was having periods every 2 weeks or having periods once a month that lasted for 2 weeks. I was told I had ovarian cysts and placed on birth control. My cycle regulated, but the bleeding is still very severe. It's become so bad that my doctor has instructed me not to take the placebo week so that I can get my period as infrequently as possible.

I suspect I have ulcerations in my intestines, due to some pretty severe abdominal pain and intermittent light GI bleeding. What I'm wondering is if it's possible to get these ulcers elsewhere in the body, like the uterus or reproductive tract? It would make sense to have random light bleeding that isn't menstrual if it's possible to have ulcers on other smooth tissues. I have had major bladder pain as well.

I'm constantly getting kidney infections, and it's odd because I don't have any bladder pain initially. I just feel sick and get the kidney pain, then it moves to my bladder. Sometimes it does seem to start in my bladder. My urine frequently tests positive for red blood cells, regardless of whether or not I have an infection. I also tend to shed kidney cast cells as well, but that's usually during and immediately following an infection.

Am I crazy or does it make sense that Behcet's would affect all of these things?

Behcet's disease information booklet

Behcet's disease and the treatment
Turkey has prepared an information booklet of Rheumatology
http://www.romatoloji.org/static/trd_patie...

martacampabadal
modérateur

It seems very interesting although I don't speak Turkish.
Thanks for sharing!

Anxiety vs. Neurological Symptoms

I have been battling Behcet's for years but was only diagnosed in 2013. Now I am on Remicade infusions. My questions is this. I am having certain symptoms. headache, uncontrollable twitching/shaking, blurry vision, sever fatigue, weak hand and arms, clumsiness/off balance. These symptoms can both be explained by either an Anxiety attack or the beginning of Neurological symptoms. Has anyone else had these issues? I am on Ativan for anxiety, but it does not help the twitching or shaking. It does bring my heart rate down. But I still find myself confused. Unable to speak properly or even think of simple words. Any input would be great. Thank you.

Neuro- Behçet's Disease

What is Behcet's disease ?

Behcet's disease of the immune system incorrectly working joints , lung, connective tissue , blood vessels, eyes, skin , gastrointestinal tract and is a disease that damages the brain . The most commonly affected organs , skin and eyes are the joints . Name of the person who first described the disease in 1937 , Dr . Hulusi Behçet' has received. Is a Turkish dermatologist Hulusi Behçet .
What are the diagnostic criteria for Behçet's disease ?

Behcet's disease in a patient subject to diagnosis is necessary to monitor patients following :

Recurrent oral aphthous (at least 3 times)
and at least two of the following features :
• genital ulcers
• eye involvement ( uveitis, inflammation of blood vessels in the retina )
• skin involvement ( psödofollikülit , erythema nodosum )
• Pathergy test is positive

How Pathergy test ?

Pathergy test is performed by puncturing the skin with a fine needle . During the test there is no blood sampling or drug administration . 2-3 days later the place pricked bulge of sufficient size and redness of the formation testing means is positive .
What is Neuro- Behçet's disease ?

Depending on neuro-Behcet's Disease Behcet's disease is a term used when neurological involvement . In 5 to 10% of Behcet's patients with neurologic involvement may be . Many of organ involvement in Behçet's Disease , a disease can be monitored brain, spinal cord and nerves may also be held .
Behcet's disease symptoms such as brain and spinal cord keep what gives the time ?

Behcet's disease symptoms according to the region in the brain creates a hold . When keep the brain membrane often headache, nausea, vomiting and visual disturbances meningitis is monitored . Hold when brain tissue stroke, sensory loss , double vision, causes symptoms such as headache . Behcet's disease by inflammation in the arteries and blood clot that can cause blockages . In this case, the outgoing head of complaints with the increase in pressure is monitored . Behcet's disease brain sometimes spontaneous tear in the wall of arteries ( dissection ) is the cause .
Neuro- Behçet's mrparenkimal What is Neuro- Behçet's disease ?

This term of Behcet's disease result in damage to tissue , particularly when the brain or spinal cord are used. Behcet's disease with neurological symptoms most often constitute parenchymal involvement . In this case, the region of the brain called the brain stem , especially in patients because of the tuttul double vision, paralysis, imbalance and lisp -like symptoms are observed . In patients with parenchymal involvement is likely to be able to recover again after at least 5 years for the granting of protection, treatment is recommended. This period may be extended further in patients undergoing heavy .
What is dural sinus thrombosis ?

Dural sinus thrombosis in the venous system in the brain is the name given to the congestion . Neuro- Behçet's disease is the second most common findings . In this disease, vascular occlusion occurs with inflammation of the veins and the blood from the brain , can not return to the heart from the brain . Accordingly, increased intracranial pressure and severe headache, nausea, symptoms such as vomiting occurs. In the case of the disease if left untreated will cause permanent damage in the brain . Neuro- Behçet's disease followed in the dural sinus thrombosis is generally good prognosis and is completely reversible with treatment . Than to repeat the parenchymal involvement is rare.
How is the treatment of neuro- Behçet's disease ?

Hi Michelle, Im a noob but wanted to say Hello. Your post caught my eye because I am having similar issues as you. I to was diagnosed in Sept 2013 and was put on ativan for my anxiety. And I really have to say in my case Memory speech and just motor issues. I get twitches in my hand or face or legs mostly. Im leaning more towards the Ativan in my case. Only because Ive had behcets before I knew what it was and didnt really have these issues. I was on xanax prior and didnt have this foggy brain that I have now.
Im going to see if maybe My Dr will try a switch in ativan to see if it helps me. Let me know how it goes for you when you see your Dr.

I'm waiting to see my neurologist again now that I have a diagnosis from my rheumatologist. I have a lot of the symptoms you mentioned. My hands are shaky when I'm attempting to do something requiring fine motor skills. Put the key in the lock? Have fun! It isn't terrible everyday, but somedays it's bad enough that I pass up eating cereal because i don't feel like getting milk down my shirt. I was initially diagnosed with migraines, however, my doctors later called them vascular headaches. They have been so severe that I've been rushed to the hospital for suspected strokes. The pain was blinding, and I suffered facial drooping and weakness. I have had days where my legs are so shaky I can't drive my car.

I do have PTSD, and am on medication for that, but I've realized that the anxiety symptoms I have are different from the other neurological symptoms I have. For example, when I'm anxious and get shaky, it's a deeper feeling of shakiness. Like it's coming from my core. Non-anxious shaking seems more superficial, like I'm only shaky on the surface of my muscles. I have no weakness in my arms or legs when my anxiety acts up, but on bad fatigue days, sometimes near the time I have those headaches, I do get weakness.

I would say keep a journal of your symptoms. When you're feeling anything, write down what you felt, and what you were doing/thinking before, during, and after your symptoms. You will likely notice subtle difference between symptoms of anxiety, and symptoms unrelated to anxiety. It's also possible to start having neuro symptoms that aren't anxiety related, but then get anxiety after because of those symptoms. Journaling it out will help you distinguish what symptoms started first, etc.

martacampabadal
modérateur

Behçet's Syndrome open studies - Recruiting participants

If you are interested in participate in a clinical study here you have a list of all the open studies for Behçet's Syndrome that are recruiting: http://www.clinicaltrials.gov/ct2/results?...

have you ever participated in any clinical trial? Which was your experience?

robpleticha
modérateur

JORNADAS DÍA INTERNACIONAL DE LA ENFERMEDAD DE BEHÇET

Madrid, sábado 24 de Mayo, Fundación ONCE.

Al igual que el año pasado la Asociación Española de la Enfermedad de Behçet está organizando unas jornadas para pacientes, familiares y profesionales sanitarios interesados en esta enfermedad.

A la espera de confirmar los profesionales que colaborarán con nosotros, hemos pensado en anunciar la fecha para que todos aquellos que así lo deseen puedan ir organizando su agenda.

A través de nuestra presencia en las redes sociales iremos dando detalles.

Para más información podéis escribirnos al correo de siempre behcet@behcet.es