Firstly, I just wanted to thank the community here as a whole, specifically the Neuro/Vision focused societies. Your insight, knowledge, and shared experiences have been a huge source of support and strength for me the last few months. So really, thank you!
The basic rundown is I'm a 23 year-old, formerly healthy guy. For the past ten months I've been experiencing progressive degradation in visual acuity of both eyes, along with various other Neruological/Optical symptoms. Before this incident, I'd always had 20/15 vision, an optometrist once remarked that I could "fly planes with those eyes".
While doing volunteer work in Japan I suddenly became very ill, with a high fever and terrible stomach pains. The 104 F degree (40 C) fever wouldn't break, so after 2 days in bed I got on a train and went to the ER. The doctors did blood work with results coming back indicative of a viral/bacterial infection. I was given some general anti-inflammatory medicine and told come back if things didn't subside within the week. After another ER visit and about three weeks of feeling awful, the symptoms seemed to finally subside. I then left to work with another organization in a nearby city, assuring myself it was just some weird viral thing that my body had fought/was fighting off. A week or so later I first began to notice alarming visual phenomena.
Artificial lighting (florescent store lights, neon signs, computer screens, tv's) all began to have this strange blurring/shimmering effect, as if my eyes kept focusing, de-focusing, then focusing again. A static-like haze began to set in across my entire field of vision, as if I could actually see the machinations of the brain/nerve/eye system doing it's thing when I obviously shouldn't be able to. I began to have severe photophobia (sensitivity to light) and red, painful eyes. My balance/equilibrium would suddenly become totally altered, with my head feeling like it was "swimming", causing a sensation that I might pass out at any moment. My ears would begin ringing randomly, sometimes for minutes, other times for hours. Text on paper/computer screens/subway signs would bend and melt into itself, making it almost illegible unless I really strained to focus on it. Shooting nerve pain would radiate from my eyes and pierce into the center of my head then across my scalp. Finally, the headaches. Merciless aches where every blood vessel in my brain felt like it could burst at any second. I was terrified.
Within less than a month it had become noticeably worse. I could hardly get out of bed, and going out into sunlight was an excruciating and frustrating ordeal. I finally decided to see an ophthalmologist. After a series of tests which all came back normal, the eye doc said she could not find anything conclusively wrong, noting only a "low light accommodation level". She prescribed some b12 and atropine drops, and sent me home. I took the drops (which did nothing except give me crazy dreams due to the atropine) for two weeks while the symptoms persisted, worsening steadily. I went back, and the doctor again said my eyes were healthy, and that it's likely a neurological issue. She recommended I go home immediately, advice I reluctantly took (loved Japan, not so keen on my home country).
The ten months since I came home have been the most frustrating, terrifying period of my life. I've seen numerous doctors of varying specialties, gone through MRI's, CT scans, a lumbar puncture (I feel for anyone else who's had to do one of these), and countless eye exams-all coming back with a universal response of "inconclusive". Each doctor has said something in the manner of "Yes, there's definitely something wrong with you, but evidence sufficient to make a formal diagnosis is simply not there. Best of luck." It's been terribly disheartening. All the while the symptoms have gotten more & more intense, to the point now where I can't drive, have lost my job, and been forced to take 1 (soon to be 2) semesters off school. I'm totally at a loss guys and really, really scared.
The only thing close to a diagnosis I've found is from my current neurologist, who seemed/seems fairly sure it could be MS or NMO (Neuromyelitis Optica, rare-ish form of MS which concentrates on the spine & eyes, usually leading to blindness). However, the MRI he ordered came back showing no plaques or other irregularities, and he's now joined the "I'm really not sure, man" crowd. Everything from MS/NMO to Lyme disease, Behcet's, Lupus, "visual snow", and Neural Sarcoidosis has been tossed around as possible causes, but nobody has taken a definitive stance in my treatment.
I'm sorry if this got rant-ish and long-winded, I just don't have any close friends to speak with and don't have contact with my family, save for my grandparents, who are themselves very ill (they don't know about any of this stuff as it would just worry them). The notion of losing my sight or worse has been plaguing my mind almost constantly throughout this experience. I feel so past being burnt out that I just don't know what to do. I'm currently on a waiting list for admittance into the outpatient Neurology program at John Hopkins Medical Center, as that seems to be a sort of hub for research into rare/difficult to diagnose Neurological phenomena. If anyone has any resources/tips/advice they'd like to share, I'd really appreciate it.
Anyone who reads even a bit of this, it means a lot. Thanks for being a source of courage in knowing I'm not alone.
-Jason
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inasense
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Jason my lovely - I can offer no real help or advice. I imagine you've posted this within a number of communities dealing with diseases involving the eye in some way? If you have, then that is far more intelligent than I would have thought to be in your pissy situation.
One thing many of us Behcet's folk know about is the 'inconclusive' results hell. The irony of the times when it is obvious that something is very wrong: you are in pain, your body is inflamed and not working as it should but because your body chemistry isn't as the medics would expect then there is obviously nothing wrong with you! I have sat in tears of pain before my rheumatologist as he told me that I had no inflammation markers in my blood and, therefore, there was nothing to be done!
I'm sure the majority of us will read/have read your letter, it's difficult not to read it to the end, or at least it was for me - your fear grabbed me by the throat and drew me in. If there is one thing that upsets me it's people being afraid - I can't bear it but, sadly, I don't have enough knowledge to allay your fears
All I can do, Jason, is say to you I am here and there is a dip in my shoulder where quite a few folk have laid their had and cried. And if you feel uneasy with me, I know my BD mates only too well and they will respond in much the same way - between us perhaps we can help ease your way as you find your way through this dreadful situation.
This response was so moving. Your time and kind words are appreciated so very much-it really means a lot. I wish you the best of health and happiness, please know that you've had a positive impact on a stranger's life by writing that.
I'm very sorry to learn that you've been going through such an ordeal.. Neuro problems are tough to diagnose. I myself have been struggling for months now with doctors being unable to diagnose my neuro symptoms - they can't tell if it's neuro behcet's, MS or both. And I unlike you have had a brain IRM with 7 clearly visible lesions one of which is an optical nerve lesion. I also had a lumbar puncture showing abnormal results (and yes they are awful). And they still can't figure it out. So you can imagine how much more difficult it is for them to figure out what's wrong with you when all your tests come back normal..
My personal opinion based on your story is that you are experiencing a systemic inflammatory reaction to the viral/bacterial infection. First line treatment in such situations are usually steroids regardless of the disease label. Have you been given cortisone or the like? If not you should try to get that as soon as possible if your vision keeps deteriorating. It should help with the inflammation whether you're looking at MS or other type of auto immune disease. If it works then you know you have some systemic form of inflammation and it will buy you some time to investigate it more. Although, from my long years in doctors' offices, until you get some visible damage -i.e. the disease has progressed enough - they won't be able to figure it out. Better to protect yourself and avoid getting worse than get to the point where it's bad enough so they know what it is and treat it with meds as treatments are no fun for these diseases.
Hi Lara, thanks so much for your response. I'm saddened to hear of your own personal battle with these elusive illness(es). I can't imagine the emotional roller coaster of having physically observable symptomology and still no concrete answers.
I appreciate your insight and opinion! This has also crossed my mind, and is something I've begun researching. I've requested steroid therapy from the docs I've seen, but they've either been reluctant or flat-out insulted by me venturing the notion. I've had the feeling steroids and/or immunosuppressants may really help the symptoms while a diagnosis is made for months now, but haven't found the right to doctor(s) who are open to the idea.
The truth of having to spearhead one's own treatment and be the primary creator of it's momentum has really been sinking in the last few months. I have nightmares where permanent, irreparable damage takes place before appropriate treatment is given because I didn't do enough, or make the right decisions. I guess in some way this is a lesson in trusting myself and being assertive with my personal health.
Since becoming sick I realized I've always carried some naive, idealized notion of Western medicine being this all-knowing being. It's now become apparent that in certain circumstances, and unfortunately for us all, this simply is not reality.
Medicine as researched and practiced today has plenty of limitations and people with conditions like ours (and many others) are right at the edge of current knowledge. And yes we have to fight for our intuitions i.e. be polite but persistent, keep track of our symptoms and tests, provide proof if necessary. Slowly we get at least partial answers.
So keep fighting and best of luck with getting a treatment.
I am not to sure what advice I can offer. It seems that you have been through the mill. well all I can do is send some virtual hugs. I empathise totally and I was one of the lucky ones that got a diagnosis quite quickly (only 2 years).
Thank you so, so much for your kind reply. I'm sorry you've had to live with illness, but happy for your eventual diagnosis. I hope your treatment is going excellently, and wish you the best of health.
All I hope is that you find the right specialist and receive the right treatment soon. What you have described is nearly all of our beginnings. Frustration and fear was I'm sure what we all felt.
After 5 years my now 11 year old daughter was finally diagnosed with BD, not because of blood tests but they finally listened to her body. Also her eye disease was the last box for us to tick. YES by this time I was going insane and ready to go anywhere but Australia. All good now as we somehow had a rheumatologist take us under her wing. I truly love her. I also have BD and it took for my daughters team to diagnose me 25 years after my first flare. Now on colchicine and feeling wonderful. Maybe have a chat to your specialist about a short dose of steroids to bring down inflammation. I'm no Dr but help is needed.
My love goes out to you and I hope you feel better soon.
Thank you so much for your thoughtful response. Hearing of your health battles is absolutely heartbreaking. I can't imagine what kind of hell it would be to see your child suffer and not know how to help her. Despite this, I'm so happy to hear that you both found the right doctor and are feeling better.
I'm going to be more assertive with getting started on some kind of steroid regiment. At this point I feel, despite the risks, that it really couldn't cause more harm than has taken or is taking place already.
You have probably realised by now that a lot of us here have also been through the mill when trying to get a diagnosis when all the tests come back normal. I have been ill for well over 20 years and for the most of that time my tests all came back normal. As other people have said here it can take a long time for an illness to actually show itself medicaly and I really feel the frustration and fear.
I had the same situation with Dr's not wanting to give me Steroids and/or any other form of medication. That was until around 8 years ago my neurological symptoms got so loud that they couldn't be ignored. I literally went from Dr to Dr to try and find one I could settle with and who was willing to take that risk.
My eyesight problems have also not been diagnosed and sound similar in description with the light rays etc. I also have double vision which affects the muscles in my eyes but also monocular double vision which started in the right eye and then progressed to the left. I must say now though that the progression has slowed down if not stopped. My eye consultants all insist that it must be a neurological symptom as opposed to any condition of the actual eye. What also has driven me mad is the lack of any sign of what is actually causing it.
One thing that came to mind when you talk of the onset is a possible parasite has entered your system. Obviously I am not a Doctor and can't assist with your diagnosis. But it was one of the possible thoughts that crossed my mind at one time.....along with a thousand others. I was assessed for this at the Hammersmith Infectous Diseases Unit who were fantastic to me....but unfortunately also could not find anything specific.
I say unfortunately because at that time I was so ill that I thought I might die before getting to the bottom of it. At that time I would have preferred them finding anything and having the worst possible diagnosis, against them not finding anything....but I carried on fighting and trying to find my own way through.
I do notice though that keeping my diet very clean and gentle fasting did actually make me feel better or at least a feeling of doing something for myself. Clearing my system of rubbish but not going at it so mad that my already exhausted system couldn't handle. Trying to get your body to deal with whatever is making it so ill and out of balance is something that you can try and help yourself with in the meantime.
This hopefully will make you even stronger than you already sound and more able to continue on your search for answers.
Hi all. Jason i'm so sorry to hear how tough you're having it. I'm struggling for a diagnosis too. I was told in March last year that the docs were 99% sure i have behcets but now they're leaning away from that. I'v been ill all my life with a few times of being very ill with gi problems including bleeding, breathing problems diagnosed as asthma but it now appears i don't have asthma, various rashes, numbness and tingling in my arms and legs and sometimes face, collapsing and a seizure type thing where i would twitch violently while unable to support myself to sit or stand. I also get chronic daily headaches. In Jan last year i got bells palsy. I've now had the facial weakness which they're not calling bells palsy any more because it is only really affecting my mouth on the right side. Could i ask what type of facial palsy you have as i've been told palsy is not a symptom of behcet's. I've also had a skin biopsy which one patholagist says shows vasculitis but another says is normal. It's so frustrating.
I am so sorry you've had to endure such severe health issues throughout your life, that would be Beyond frustrating-I honestly can't imagine it.
As far as the facial palsy issues, I apologize but I'm not very familiar with the medical nomenclature of these things yet, so this may be an anemic description, medically speaking. It really just feels like abrupt, violent nerve impulses shooting out (usually from my eyes, sometimes from the front or back of my head) then across my entire skull. I also get them in my upper arms and forearms, and in my hands. The closest I can get is a moderate electrical shock, such as you'd get from a malfunctioning wall outlet or when someone filled with static electricity touches you. Thanks for your response, it's truly appreciated.
My heart goes out to you and your journey to gain the health you'e always deserved. Best of luck,
My heart goes out to you and your struggles with finding proper diagnosis & treatment. That you've had to live with such severe illness for that length of time is absolutely tragic, and just shouldn't take place in this time of modern medical science. When you described the feeling of wanting any diagnosis, regardless of how serious, my heart ached. I really am so sorry you've had to push through such experiences.
On a positive note, your response is an absolute testament to your courage and immense strength-I'm honestly amazed and very, very humbled. It's sometimes easy (at least for myself) to slip into a place of anger and resentment because of my age and the thought of my own body trying to sabotage my quality of life. I was in that place today, and your words really helped put things back in perspective. Thank you so much.
Your suggestion of a parasitic infection is something that had also crossed my mind. One doctor had mentioned it as well, but in the unfortunate tone of "If that is what you're dealing with, treating it will pretty much be taking stabs in the dark. You'll likely just have to wait it out". I've since focused on auto-immune type illness for research but if you have any info on parasitic illness from your own experiences it would be greatly appreciated! Every bit of knowledge really helps battle the insecurity of being ill from an unseen, unknown source.
I've also noticed that cleaning up my diet and fasting (not hard not to do as my appetite is almost non-existent) has helped a bit with the headaches and nerve pain. I'm glad to hear this provides relief for you as well, strange circumstances to change our diet for the better but we must work with what we have, yes?
Hi Jason, I'm so sorry for the awful time that you've been having. I am just a "probable Behcet" but I was as fit as a fiddle before getting an upper respiratory tract infection and I reacted badly as you describe, and also had a bout of uveitis. MS was ruled out for me too as I had clean MRI's and that is how I ended up in the Behcet pot. I do not get immuno suppressants as I don't have a full diagnosis but I do get drugs which help with the inflammation. Lots of good advice about eating clean, I am a huge fan of avoiding anything processed. I have taken a career break and worked very hard at improving my fitness through swimming and can now manage an exercise bike too. You don't mention joint pain which many of us are plagued by. If you can try to be a little active I have found it does help offset the fatigue a little.
I think your referral to John Hopkins signifies that you are believed that something is very wrong and I hope that it will help with a treatment plan.
I am so sorry that you are so scared, I was so carefree and fearless before I became ill and it is very scary. It isn't right to lose your health at your age so if you feel alone or miserable in the dark hours of the night....put a message on and someone will respond so you are never truly alone with the pain and fear.
Thanks so much for your thoughtful response, it really resonated with me and brought some relief on a very rough day symptom-wise. Your advice about trying to stay active feels very important...this whole thing has set me into a pretty deep depression I guess, and I'm really not used to this kind of head space. Exercise used to be a part of my daily life, but I began slacking on it as the illness intensified.
I am sorry you've also found difficulty finding a proper diagnosis. I wish you nothing but the best in life, and specifically in reclaiming your health. You seem to be doing an amazing job already.
Hi Jason....WOW....talk about being through the ringer!! I've been in the same positions all the way from the Mayo clinic unable to diagnose me (Keep your appt at Johns Hopkins, but don't think for a second they will have all or any answers tho they may). To doctor thinking I'm faking for attention. Their really are no markers that show with many BD type inflammation along with other markers that don't show like they will with rheumatoid arthritis. My best advice as hard as it is being so damn worn down (there have been times when I've beenso worn down I thought Imay die at any moment from my body just giving out). Start calling around to as many rheumatologists, optical, neurologists to find some who actually know about Behcets/MS, try your university medical diagnostic center and rheumatology/neurological dept. Universities can be agreat tool for people like us! YOU NEED TO BE YOUR OWN ADVOCATE!!! Don't even waist your tim bouncing from one dumb ass doc to another!! That will wear you out more. Just get out a provider book and start dialing and asking. Otherwise you'll spend possibly years trying toget correct diagnosis. I also noticed you didn't say what state you are in. Also key in utilizing these sites so if others are in same state they can give you their doctor's info, this was key for me!! Along with education. Also don't be afraid to print some of this and show others stories with the health professionals. There is one other support group I use on Yahoo. It's Behcets support on Yahoo very very knowledgeable people!! Pls feel free to email me directly. I would be willing tospeak more one the subject. My email is getjking@gmail.com. also one last thing Google Behcets + Dr. Yahzy (I think spelling is correct)+ New York he's world renowned in this field. I hope this finds you well!!!
Very knowledgeable and if you give your state or country others are quick to share their Doctors!!! I think they even have access to listings by state for doctors. Again feel free to email me directly.
The attitude exhibited in your response is exactly that which I feel puled to assume myself. I can feel the strength in your words earned from (no doubt) some very challenging experiences.
I will keep the appointment with JH but am trying not to develop any expectations of what may (or may not) come of it. I live in California, so going across the country to Baltimore for an unknown result is a bit intense...but in life you sometimes have to embrace the unknown and just go for it, right?
I know the feeling of being almost certain your body/mind/both will give out at any moment so, so well. It's a totally surreal and terrifying feeling, but the next day always comes, along with another opportunity to face things head on and get it done.
It's funny how you exclaimed the necessity to be one's "own advocate". That phrase has been bouncing around my head for a few days now, and for you to bring it up by chance like that just drives it's importance home. I'll remember it when things get rough!
I've started to realize how futile it is to take stabs in the dark with random docs, hoping they have the right attitude, knowledge, and willingness to work with other random doctors you've found to form a cohesive team and get things done - it's just not realistic. I'm now doing more intensive research about doctors/clinics, and being careful in how I spend time/money in pursuing treatment. Great advice there, thank you!
I'll be sure to check out the Yahoo! group and post on there as well, probably a copy-paste from here which I hope people won't be annoyed by, it just takes a lot emotionally to go through the whole pathology of events again & again.
I actually requested an appointment at Dr. Yahzy's clinic just yesterday, so we'll see how that goes.
I really appreciate you extending your email out, I will definitely keep it in mind, but also don't want to bum other people out with my personal problems (it took a lot to even make this post, I deleted then re-wrote it at least a dozen times, haha).
Dam it I lost my latest reply and like you I really don't have the energy to rewrite it. Just email me with your # and if you are not OK with that I'll give you mine... but I see so many similarities I think we should talk. Its late where I am in MN but send me your # and I'll call tomorrow or you can call me. Best wishes and I'm way extremely thrilled you have the luxury to see Dr. Yah I as I live way too far to even think about a visit.
I sent another reply and lost it with atom of imfo about getting medical assistance cause you said you lost your job especially since you are lucky enough to see Yahzy...people wait way long time to see him. I don't have the energy to rewrite all that!!! I hit wrong button and lost it all unless I was lucky enough to have it go through when I saw it and click send. Just emal me so we can talk my ears are ringing like a mother f!¿ckr I gotta go to sleep or at least try. Best wishes
Hi jason, i am so so sorry about ur struggles. It just tears at my heart. Ive had behcets for 30 years with the first 12 years being misdiagnosed by many reputable clinics in the us. Without boring you of my digression with this illness, i suffer alot w uveitus. I have just foundd the most amazing opthomologist at northwestern medical in chicago. Her name is debra goldstein. I would encourage u to call her asap.i started seeing her approx 5 mos ago, they do an incredible indepth exam. Its worth a try, and i agree w others prednisone will help w tge inflamation but u may def need a longer term treatment plan. I will keep u in my prayers. if misdiagnosis
Jason, i forgot to mention w my other reply that ive seen dr yazici at behcets clnic in new york. He is wonderful and also extremely knowledgeable. I thought dr goldstein would be a better fit fir u with all of ur eye problems.
Thank you so much for your response, I appreciate it, and apologies for my belated response!
Your support means a lot! My heart also goes out to you, having to wage such a massive battle for so long (and no doubt still fighting) takes immense courage and strength. More than anything this forum has reminded me first of the kindness and second STRENGTH in others. It's truly amazing...
I would definitely like to see Dr. Goldstein, and will be contacting her office this week to see about setting up an appointment while I'm on the East coast at JH. Thank so much for the recommendation, sometimes I get so overwhelmed with making the right decisions (doctors, clinics, etc.).
Hi Jason, I feel so bad for you. It seems that you have every symptom that I have ever had over a 12 year period! Neuro symptoms are so scary as is the sight loss. I remember the many times I have spent blubbering and blubbering. I really hope that they are able to treat your symptoms effectively very soon as time is always of the essence. I am on infliximab and it has been a life saver for me. It has kept me in remission after a high dose of steroids and immunosuppressants. A good diet and plenty of water helped me too and the feeling that you are doing something to help yourself is a major game changer. Love to you and best wishes
Thank you so much for the kind words, they mean a lot!
These symptoms really are scary, I have to admit as well to sitting on my bed with tears in my eyes, feeling totally hopeless and inept in being able to fix this thing.
I'm happy to hear you've found the proper treatment to keep you in remission, so great!
It seems a good diet and water intake has been echoed several times here and by others I've met throughout this experience so these are obviously important points to keep presenting themselves. I will definitely work to incorporate them more = )
**JASON*** long but packed full of great Info and resources!!!! Lots of stuff you may be going through!!!!
A MUST READ!!! FROM MARY BURKE THE COFOUNDER OF THE BEHCETS-SUPPORTGROUPS@YAHOO
Hi Everyone,
It’s been a long time since I’ve posted, but I’d like to welcome all of our new members to this amazing support group.
I'm Mary Burke, 68 years young, a volunteer co-owner and co-moderator of the Behcet-support Group on Yahoo at health.groups.yahoo.com/gro..., and the volunteer Vice President of the American Behcet’s Disease Association (ABDA) behcets.com. I have volunteered within the Behcet’s Disease community for over 20 years.
I was adopted when I was six months told. I live in Blaine, Minnesota. At my last count; Minnesota has approximately 30 men, women and children diagnosed with BD. My wonderful, supportive husband and caregiver, Bob, and I have been married for 46 wonderful years. We have one daughter (45) and one son (43) and three grandchildren eldest being 27 years old. Our daughter is diagnosed with a rare lung disease (Alpha One Antitrypsin Deficiency), asthma, Resaca, and possible MS).
As you read about My Journey – Living With Behcet’s Disease, just remember…Just because something isn’t happening to you right now, it doesn’t mean it is never going to happen. You never know what’s just around the corner. You can just hope and pray your family and friends are there for you if or when it happens!
In 1983 I was diagnosed with Behcet’s Disease (BD); however, I’ve had sporadic symptoms and flares since my childhood. Later, I was diagnosed with Neuro-Behcet’s Disease (NBD) and Gastrointestinal BD along with many multi-system diseases. So, I do know what my fellow Behceter’s (BDer’s) are going through, because I’m going through or have gone through it, too.
Behcet’s Disease is a rare autoimmune disease whereby our immune system attacks and harms our own tissues. Living with BD is like being diagnosed with Lupus, MS and Chron’s…simultaneously. (Side Note: Some are diagnosed with one, or more, of these autoimmune diseases in addition to BD.) There is no single test used in diagnosing BD; therefore, it can take years to get diagnosed correctly. BD has no known cause and no known cure.
Behcet’s Disease symptoms can and do vary from patient to patient. There may be flares and periods of remission. This is also true with the medications used to treat the symptoms. In other words, there is no one medication that helps all of our symptoms. A medication that may work for one of us may not work for another…even when using the same medication to treat the same symptom(s).
Some BD patients are told by their docs that “BD burns out as you age. Again, every BD patient is affected differently by this disease…for some this is true, for others not so much…above all, hope is key when dealing with a chronic illness.
Prednisone is a commonly prescribed medication used to treat flares. Many of us use a combination of medications to treat our symptoms of BD. In 1983, I was diagnosed with Retinal Vasculitis; I was treated with Prednisone and Chlorambucil (immunosuppressant). Through the years, when my flares were fairly mild, we felt it was better to treat each symptom as it came along with the drug(s) that worked best for the symptom(s) and me rather than treat me systemically with drug(s) that can potentially cause more serious side effects. When I was exhibiting systemic disease symptoms, I was treated more aggressively with prednisone, methotrexate and/or Imuran.
I have/had many of the BD symptoms everyone talks and/or reads about, but I consider myself one of the fortunate 7-10% of BD patients, because I can’t remember ever having oral ulcerations. I have/had intravagional, small bowel and colon Aphthous Ulcers as well as ulcerations/lesions in my brain, nose and throat.
Like many Behcet’s patients, I’ve been poked, prodded, and stuck, x-rayed, tested and biopsied. Through the years, I’ve been examined, tested and treated by many doctors/specialists (including two of the best). I have been diagnosed and misdiagnosed. I’ve had many doctors/specialists who refused to treat me, because he/she “didn’t have or want to take the time it takes to treat someone with such a rare disease!!!” One, my PCP at the time and after treating me for 10+ years, told me to, “Get a life beyond Behcet’s, because I asked for a Prednisone tapering schedule from him!!!!”
Doctors oftentimes tell patients, "You can't have BD, because you aren't from the Middle Eastern countries or Japan". This is totally untrue. BD affects people worldwide...yes, it's more prevalent in the Middle Eastern countries, but there are patients worldwide. Approximately 13,000-16,000 diagnosed in USA.
My secondary diagnoses include: Retinal Vasculitis, Iritis, Bi-Lateral Uveitus, (Blind in right eye), Cystoid Macular Edema, Raynaulds Phenomenon, Fibromyalgia, Chronic Fatigue Syndrome, Neuropathy, Vasculitis (small vessels in arms, ankles and legs and ankles), Migraines, Atypical Migraines, Arthritis, Osteoporosis, UTI’s, Fecal and Urinary Incontinence, Hearing loss (Single-Sided Deafness - Left Ear), 82% Balance Loss (Left Side), Slight Hearing Loss (Right Side), Tinnitus (both ears), Restless Leg Syndrome, GERD, TIA’s, Cognitive Dysfunction, Memory Loss, Confusion, Brian White Matter Lesions, Erythema Nodosum, Folliculitis, Purpula, UTI, Ureteur Blockage, Right Bundle Branch Blockage (Heart), Right Ovarian Vein Syndrome, Costochondritis (Inflammation of the cartilage in the middle of the chest where ribs are connected), Polyps, and Ulcerations (Total block in colon resulting in surgery to remove 4 CM of the colon), Blocked Ureteur, Barrett’s Esophagus, Thrombocytosis (Increased and especially abnormal increase in the number of blood platelets), Fibromyalgia, Dermatitis, Hypertension, Perhiphil Neuropathy, Raynaud’s Phenomenon, Sciatica, Fluctuating Blood Pressure, High Cholesterol, Depression, Alpha 1 Antitrypsin Deficiency Gene Carrier (Lung Disease), asthma, COPD, etc. Also, chronic fatigue is also a major issue I deal with daily.
I worked many years, loved my job and people I worked with. However, in 1999, it became apparent I could no longer fulfill the requirements of the job. I was approved for a Company Long Term Disability Leave of Absence. In 2000, I applied for Social Security Disability (SSD) Benefits. To my surprise, I was awarded SSD Benefit Payments the first time around. (I think this was a first using BD and Neuro-BD as the diagnoses). My SSD award was in effect until 2007 at which time it was extended until I turned 65 years old.
In 2008 my Primary Care Clinic closed. I was devastated…I now had to find a new PCP and Rheumatologist. This, we know is no easy feat!!! Physicians at a University of Minnesota affiliate clinic came highly recommended...I found this to be true when I had my first appointments with my new PCP and Rheumatologist there. My care can now be coordinated…AND, these doctors actually speak to one another, and most of my records are available on-line for most of my doctors to see.
We recently bought a place in Mesa, AZ. We now spend between five (5) to six (6) months there. We call it “Senior Camp”, and told our kids “We joined the SKI club (spending kid’s inheritance)! We have so much fun. So far, I’ve had no medical issues to speak of while in AZ; therefore, my Minnesota Rheumy gave me a standing order for labs to be done every two (2) months. I have met and made friends with several BDer’s here in the Mesa, AZ area. They are more than willing to put in touch with their docs, if I need medical attention.
Basically, the only problem I’m having is with my gastrointestinal system…this is ongoing and becoming worse as the months go by. I’ve been trying to deal with it. However, I now consider it a major issue and have made an appointment with a Gastroenterologist who started me on Entocort. It took awhile for this to being working, but when it did, it helped for a short while.
In 2012, I got sick with Pneumonia, an ear infection and acute sinusitis. I was treated with antibiotics that killed the good bacteria in my colon causing a C-Diff infection.
After this, I had a stroke that affected my left side. I was fortunate and was taken to the hospital, and I was given TPA (clot busting medication), and recovered with very little permanent damage to my brain. My Neuro took me off Aspirin and prescribed Plavix which is a blood thinner. Several weeks later, I got an infection in a tooth, and had to be put back on antibiotics and have a root canal. All of this was caused by a BD flare. During this time, I was also exhibiting restless legs and arms every night. I am already on Neurontin, and was prescribed Neupro (Rotigotine Transdermal System) which is helping immensely. Chronic fatigue is also a major issue I deal with daily.
I woke up early one morning, to find I had bloody diarrhea. Back to the ER, where I was admitted and assigned a Gastroenterologist. A Colonoscopy was scheduled. The findings are: There were 3 small ulcers at the anastomosis itself, 2 of these were definitely associated with staples. It could be seen that I had staples surgically in the ulcer. They had the area of the small ulcerations cold biopsied x3, being careful not to biopsy the staples themselves. There was no active bleeding. There was no blood in the colon. The rest of the colon appeared normal.
Biopsies were done, and the assessment indicated:
Bleeding may have come from the ulcers at the anastomosis.
GI doctor suspected these are from chronic\ischemia rather than Behcet’s syndrome, because of the staples that were seen.
These may have bled, since I was recently put on Plavix.
Pathology report indicates the following diagnoses:
· Colon, Anastomosis biopsy: Ulcer and colonic mucosa with ulcer edge reactive epithelial and stromal changes. No cytomegalovirus cytopathic effect. No dysplasia or malignancy.
· Colon, random sigmoid biopsy: No significant abnormality. No Colitis
It was suggested by a Neurologist, and I agreed, to stop taking the Plavix, as this was thought to be causing the blood in my stools. The blood stopped once Plavix was discontinued; however, the diarrhea and incontinence continues. I was prescribed Pentasta, in addition to meds I’m currently taking. I also started drinking Aloe Vera Juice as suggested by GI doc; however, it made my bowel issues worse.
In July 2013, my gastrointestinal doc suggested I stop taking Endocort, Pentasa and Mercapturprine, and suggested I try Remicade. Yeah, finally, someone is trying something, since the medications I’ve been on for years aren’t working.
July 15, 2013, I had my first of three Remicade “Start Up” infusions, and I’ve had one night when my bowels caused problems.
July 29, 2013, I had my second Remicade Infusion. Again, bowel flare subsided for several days, only to start again with such a vengeance, it was necessary for me to restart Pentasa along with the Remicade, and a plan to start Prednisone along with these meds, if Pentasa doesn’t help.
August 27, 2013, my third Remicade Infusion is scheduled.
September, 2013, so much for Remicade…My doctor called to tell me Remicade is no longer covered using BD as a diagnosis code. So, my infusions have been stopped. Remicade wasn’t helping, so we decided to try something else. Humaria was suggested, but because I have Neuro BD, it isn’t an option. Pentasa is the drug we decided on…4,000 mg. daily. Pentasa goes right to the colon, no major side affects…it’s not a biologic or immunosuppressant medication. To date, this is somewhat helping; however, I still have loss of fecal continence, and am never sure when diarrhea or the need to go will occur. Because of this, Immodium or 2.5 mg. tabs of Diphenoxylate/Atropine Tabs are my constant campanions and source of some relief.
I hope this helps to answer questions about BD and me. Spread the word about BD…It’s my dream for everyone to join the ABDA, volunteer, and raise funds, participate in research studies, and BD awareness. Today, there is on-going BD and rare disease research; there is no cure to date. I have hope a cure will be found…Just remember, there is always hope and “Power in Numbers!!!”
If you have questions, please feel free to contact me at mburke@behcets.com or maryburke1@msn.com
hi there- i wrote a longer reply to jason above- but i noticed what you said and wanted to very briefly tell you thssat i believe ALOE VERA gives our bodies a very strong boost and strengthens our immune system and i believe is known for helping and healing auto-immune diseases. Please read into this- and pray as well. God is the Healer and allows things for certain times/seasons... anyway, \please look into this. Forver Living products make the best aloe vera gel- in yellow bottle. i think 2 or 3 bottles and you might be feeling much better.. God bless x
Hi it's getjking... I'm hoping you are doing OK as you've replied toa couple of my replies but not lately. Not trying to be a pest but I really do know what it's like to say f¿!*%t to the whole when you feel terrible or even worse... as I'm sure you can understand wholeheartedly!!!! However, I did send you some really good information (that Yahoo group is an international group along with big emphasis on local state Dr.'s via access to the list's if you'd just PLEASE USE WHATEVER DECENT TIME YOU CAN TAKES ONLY 15MINS TO JOIN!!!!WORTH WORTH WORTH IT!!!!!! PLS lemme know you are at least healthy enough to read this!!!! Pls.respond!!!.I see so many. similarities between us!!!! If you don't trust me to contact me via the email I sent at leastlemme u read this message and signed up forthat yahooYahoo group and reply back to lemme know you are OK!!!?!! Best wishes Jesse
Apologies for the slow response, I didn't meant to take this long. Symptoms have been really intense the last couple of weeks, and things in general are a bit hectic with trying to find a place on the East coast. Anyways, I really appreciate the info you provided. Mary's story is heartbreaking, but how she's taken that experience to help others through the yahoo group is really inspiring. I'll be sure to join!
I hope I didn't give the impression that your info and kind words went unappreciated, they are very much so. The illness has just been getting to me lately...haven't been in the best place emotionally/mentally, and I tend to isolate from people when in that head space. Silly right? Backing away when you need people the most...
Hey Jason, I have been going through the exact same thing over the past year and a half, I would really like to talk to you more to see what we have in common, please hit me up, my email is ericmichaelfitts@gmail.com
Hi there Jason, I'm sorry to hear what you have gone through. A few things might help that you need to take seriously. first if your immune system is strong your own body can fight what is going on. Second, certain things aggravate infection- often dairy does that but it can be many things. There is a website by Dr Mercola ( he is one of many) which is alternate healing through diet. Please don't underestimate the power/medicinal effects of food. People have been healed of just about everything by changing their diets. I have come to believe strongly that God has given us bodies which are capable of being completely restored to health if we we sensibly provide the right nutrients. I went vegan 5 years ago and my tinnitus is even gone as well as other things. Ive only just read it could be because the dairy ( which I no longer have) often aggravates tinnitus!! Often its also lack of nutrients ... Please research some of these online doctors who focus more on nutrition than medicines. Steroids can be harmful so get some advice first. You may not like the last thing |I will say but if the worst comes to the worst please know we have a creator who loves you. Ive personally witnessed supernatural healing about 8 times I should think, including people I knew personally and who had been untreatable by doctors. I haven't always been a christian but seeing things like that changed me, among other things too. I believe you can be healed.. Don't give up. Things to think about and include possibly are ALOE VERA juice ( get it from Forever Living which does the best as far as I know) which boosts the immune system. Look into the VEGAN diet and its health benefits. Describe your symptoms to one of these online nutrition doctors like the Mercola guy and I think you will get some real help. Also, remember that God sent us Jesus for times like these- He is there and He answers when we call and really need Him. God bless- if you would like any further contact my facebook is fiona deveney in Redditch, Uk.
Hi Jason, bro! Your story is very dishearening and I totally empathise with you! I read every single comment of yours left two years ago and I badly wanna hear you say you are doing all righ at the moment...plz keep me updated on your state of health. Wishing you the best of luck and health! Stay strong and NEVER EVER LOSE FAITH!
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Could Behcet's be my problem?
Behcet's Specialist in the UK for bowel & joint symptoms
Please help searching for a diagnosis in US 
Feeling so poorly!!!! What can I do???
