Behçet’s Syndrome Community

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robpleticha
moderator

Behcet's disease awareness day is May 20!

What do you have planned for Behcet's awareness day 2014?

This link from the American Behcet's Disease Association is from 2013, but the ideas for activities are still very relevant:
http://www.behcets.com/site/pp.asp?c=bhJIJ...

Got asthma?

Three years ago I began having trouble breathing and after only 75 Dr. Appointments and a half dozen E.R. Trips I was finally diagnosed with severe asthma. I had many other symptoms start around the same time. Visual disturbances (seeing trails), difficulty swallowing, non-stop mouth ulcers, memory problems, reactions to meds that i had been on for 10 years, new food alergies, numbness in face hands feet, sinus/uri/eustation infections, ringing in ears. And that is just the ones that pop into my head. To add on to the asthma, I never had trouble breathing my whole life other than broncitis about once a year. I was just diagnosed 2 days ago with Behcet's. I guess my question is, has anyone started off like this or have similar symptoms?

Elevated area on iris.

Visited my ophthalmologist for eye pain on Thursday. He found "an elevated area on the iris". I'm not sure what this means but I'm assuming it's cause for alarm. He pulled some strings and got me worked in to see a retinal specialist on Monday with a Dr. Ching Chen in Jackson, MS. I'm not sure what this could mean or if it's related to Behcets but I was hoping that one of you could enlighten me. Please help, at this point I'm very confused over the situation. Thanks and Happy Easter!!!

I think it was two years ago now I had the first mapping done of the back of my eyes. The doctor was so serious and sad when he was talking to me. First he said you have the start of cataracts, glaucoma but without high pressure, your optic nerve is fraying away, Iritis, and floaters so bad he didn't know how I could see. Being me I looked at him and said the back is so ugly because the front is so beautiful. He didn't know how to respond but it was the only way I could take in all the news. I had a period of about six months my eyes felt like there was a tiny little person behind them with stilletos pushing them out. I did a predinsone type drop for a few months and they increase my immune suppressent and that helped. I infact stopped working over this pain. In a time frame of about 9 months suddenly the pressure was gone and the wonderful diseases decided to go back to nerve and joint pain. I am sorry you are having this and I hope you are lucky like me and it just starts to lighten up. I have been living with the disease since I was 18 and now...well let's just say we are getting close to 40 years. I have gone through the horrible ucler phase that was about 20 years. I had the neuro phase that stopped me in my tracks in my career as a interior designer. I have fought medication weight taking close to 20 years to get back to a weight I feel good at. Love that I feel good. Never take everything as a cause for alarm...concern and redirection, yes. When you think it can't get any worse sometimes things will clear up on their own or a new problem takes center stage. You will always feel confused but know you are not alone. BE your own advocate. I am so lucky, in a sad sort of way, my best friend has MS and has had Trigeminal Neuralgia and the brain surgery for it as well. I have someone I can vent to that understands when I say I want to die that means, at this moment I can't handle it but tomorrow will be another day. Hang in there and best wishes for this to be sorted out soon.

Thank you Bobbi. I'm stuck in this phase where I don't have a dx however I have have all these crazy symptoms. I see a Rheumatologist on the 29th so I hope I get the answers I need.

Once again stand up for yourself...I don't mean to sound negative but I have not had a day where I wasn't in some sort of pain ever that I can remember. Have I learned to cope and to make the best life I can around the pain, yes. You need some time, breathe and know some avenues you are going to try will work out and others will not be successful. You are not Behcets You are a beautiful young woman with so much to offer and so much to live for. Adapt, mourn, outsmart, and even with Behcets try and enjoy the good moment so much the bad will seem a little less overwhelming. Honestly some days I would love to say f...it but you just go on. I do some days say f....it, but I just have to remember there will be others that are not that bad. Hang in there and once again learn and stand up for yourself and your care.

Medical community

Doctor communication

I have my own set of doctors to cover most parts of my body...wait other than hair pretty much all of it. Why can't they talk to each other and make decisions on the big picture not their own little world. Why does this disease attack one part of the body, make you totally hopeless and frustrated and then go on to the next. I fought with my insurance for two months to get one medication approved to have the doctor decide that wasn't the direction he wanted to go. I have a direction I would love for him to go. Not really we have been together since 94 so I suppose we have a bond. Right now joint problems are the worst. I have an elbow that as soon as you drain the fluid off, it resupplies a new fresh batch. Hope everyone is hanging in there.

karend
moderator

How to use the Comparative Chart of Systemic Autoinflammatory Diseases

Our Comparative Chart of Systemic Autoinflammatory Diseases (SAID) has become a leading tool for doctors and other medical professionals worldwide. Did you know that you can search content on the chart with a simple keyword search bar when you click "command-f" on your keyboard? Want more tips? Take a look at this blog post that will help you to best access and utilize this chart if you are a doctor, or a patient seeking more information on these diseases. You can download a copy from our website (the link is in this blog post), but take a look at this article first. http://saidsupport.org/how-to-use-the-comp...

If you need a printed copy, there are instructions in this blog post, but you can also email us at karen@autoinflammatory.org to request a copy to be mailed to you. Doctors and patients are thanking us all the time for this resource, and we are working on developing a more interactive, multilingual, easier to search version that we hope to launch by early next year. We are so thankful for grants from Novartis and Sobi that have helped this chart to be available in print, and online to increase awareness for these diseases worldwide, in addition to the support from many in our patient community. Thank you!

richard1
moderator

Hi Karen

Thanks for this information. What an excellent, thorough yet simple visual comparison between a large number of diseases.

I am sure it will be invaluable to medical professionals and patients in particular.

Regards

Mirta
moderator

Thank you for all your work on behalf of our rare disease communities, Karen! This chart provides important and easy to read information which will benefit so many!

Blood clots in lungs and heart

Hi every one,
I just got home 2 hours ago from the hospital.
2 Weeks ago I was complaining of calve pain and swelling. I felt or was concerned it was a blood clot. In about 2 days it went away so I thought it was just another ache and pain of BD. Then each day I started getting shortness of breath with activity. Last Wednesday, it got so bad I went to the emergency center. I also started coughing up blood. They took an x-ray but it did not show anything so I was given an antibiotic and sent home with a diagnosis of Bronchitis.
The breathing got worse. Friday went to my Orthopedic Doc to make sure that I was not passing clots from the leg. He looked at it and told me that in no way it was a clot and sent me home,
10 pm Sunday night, I started having sharp stabbing pain in mid chest and could not get a breath. I called out to my husband (he was in another room), Stood up, made it to the doorway then dropped to the floor. After a 911 call, EMS was there in 3 minutes and I was on the way to hospital in 5 minutes. Everyone was sure I had a heart attack. In the emergency room it became a nightmare.... all of my veins would collapse when they tried getting blood or putting an IV in. after 4 hours they literally forced enough blood out of my thumb to get blood gases. My blood pressure was 201/110 my respiration was 153 my oxygen level was 80. Blood Gases came back normal so no heart attack. White blood cell count was elevated. No Temp. Next chest x-ray: Showed some shadows so I was to be T sent for a CT-Scan with contrast. I still did not have an IV. It took 4 more hours to finally get a mid line IV. I was immediately taken to have the CT scan. They took one set of pictures and stopped. I was told that before I got back to the room they would know what was happening to me,
It was less than 10 minutes that I was back in a room when the Hospital Internal Medicine Doc burst in the room and told me I was being transferred to Medical ICU and there was a good chance I would not make it. He then explained (on the way to MICU) That I had a blood clot in all lobes of both lungs and a "Saddle Embolismic mass" in both left and right ventricles of the heart. Lovenox was immediately injected in my stomach, was given aspirin and nitro. And on oxygen. Over the next few hours was given several tests including an Ultrasound of heart, lungs and legs. They found another clot behind the right knee. The heart had not suffered damage and the lungs looked to be free from permanent damage.
The next 24 hours I stayed in MICU. They were able to get my Blood pressure down to 118/81, Oxygen levels back up to 92, and heart rate to 88. Was sent back to a regular room on Tuesday night and was released today. My IRN (Blood clotting factor) has not gotten above 1.2 . It needs to be 2.0 or greater to dissolve the clots. With it being Easter weekend the consensus of 6 Doctors was to send me home with home health nurses checking me every other day with giving myself Lovenox shots every 12 hours till IRN levels are high enough. Then continue taking Coumadin for at least six months. Then have a blood work up by a hematologist to see if the BD has caused any permanent blood clotting problems.
That brings me up to tonight, where I knew as soon as I could…I would sign on and let all of you know this can happen to any of us. And it is due to BD.

One good thing that came out of this: I took a whole hospital from being totally ignorant of Behcet's to having Doctors ' Nurses, Lab Personnel among others...to being educated about BD and multiple Medical papers are coming from forth from all of this. Within 5 hours of being in the hospital I had at least 200 medical staff on the internet finding out about BD. Anyone who asked I told them to go to this site. To get the patient's point of view.
Hopefully by the ignorance of doctors that I had to put up with and not dying... We as a community will be helped. I will keep all of you informed on my further adventures ….

Dora S from Ala

richard1
moderator

Hi Dora

What a dreadful and frightening experience but so glad you are with us to tell the tell.

Hope you feel better over the next few days and you continue to improve.

Regards

As of today, My IRN level is still too low 1.1
I see my Internal Med Doc in the morning.
Just have to wait till then.
Dora

Behcet's disease and lungs

My friend Behçet's disease decided to "drop in" on my lungs.
According to the doctor, this is a case of one in one million!
Before that, I had ulcers and superficial thrombosis.
And now the lungs.

The treatment was with cortisone/steroids (75mg) colchimax. Which did not have as much of an effect as the 6 injections of cyclophosphamide.

Is there anyone here with a similar experience?

Thank you for your testimony and answers.

Good luck to all.