Behcet's Syndrome Society
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Behcet's Eh?

Hi everyone,

This Canadian sends all of you wishes for mental and physical peace and good health, regardless of whether you are pre or post diagnosis, personally have BD or are supporting someone who does.

This forum, and the people on it, have helped a lot during the past couple of months, especially on the darker days and nights. Thank you!

I was wondering whether anybody here is located in Canada. Behcet's support groups are almost non-existent here (I have not been able to find any online or in person) and we also do not have any centres or hospital divisions that specialize in the condition. It almost makes me wish I could move to the UK! Having the opportunity to hear about someone's medical journey as they navigate through the Canadian healthcare system would be such a privilege! If there are, that's good! If not, that's great! The less people affected, the better! : )

Simply casting my net. As I wait for fish, take care overseas comrades!

UK

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Just to say I hope you find others with Behcets closer to home - I know I felt very isolated too when first diagnosed, we are a rare species! You will find a lot of support in this group, wherever in the world you are. I hope you find fellow comrades closer to home :)

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yes, I am here from Winnipeg, we are trying to involve our son in Toronto Vasculitis research via Sinai Hospital...hope to talk to all in Canada so we understand ourself better...

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Hi Ashveer,

I am sorry to hear about your son. I am not a parent, but I can imagine that it must be hard, seeing how my own parents have been dealing with my working diagnosis. (They are in denial and never speak of it.)

I reside in Toronto and am currently seeing a rheumatologist at Toronto Western Hospital. His research mostly focuses on Sjogren's Disease, but after being passed from one doctor to the next (a huge line of I've forgotten how many referrals, perhaps 30), this is where I am at the moment. I would be more than happy to share information about him if you'd (or anyone else) would like.

Could you please tell me a little bit more about the research that is happening at Mount Sinai Hospital, that you are looking into for your son? I'd really appreciate it!

Sending good vibes for your son and the entire family.

UK

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Hi UKToronto, please do share the doctor that you are seeing, I would like to have more research for my son's situation - it will be difficult to get a referral, as the Outpatient Clinic here in Winnipeg is treating him already but we like to know.... the ongoing research is at Mount Sinai Vasculitis Clinic 416-586-4800 ext 5250 General Rheumatology and this is where I first learned of this at the CanadaBehcets.Com Official site: For more information on how to participate via kits, doctors and patients are encouraged to contact Dr. Siminovitch’s research assistant Robyn Chen Sang at (416) 586-4800 x-5492 or by email at: vasculitisgeneticstudy@mtsinai.on.ca

I got one email asking for contact details and mailing info. to send us the Kit via Fed/Ex, Tuesday, we responded Wed, and as of now there is no phone call from Fed Ex. to deliver the Kit, I will have to update next week as to why the Kit has not arrived yet, too soon maybe? since you are in Toronto, you can visit the Rheumatology Clinic in person at Mount Sinai and the kit asks for doctor questionnaire, consent of you, and saliva sample, although the CanadaBehcets.Com was a blood draw sample, you can ask them in person, I am sure if you want, they will enroll you, but for some reason, we are left hanging and waiting....do let me know please about your involvement, if you go or not to go, I think it is really worthwhile, please do share with me back and update me... I wonder why we don't have a kit yet, my email is sghuttora@shaw.ca

really wishing you well, and pls. stay in touch

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Hi Ashveer,

Thank you for the information! I will look into it over the course of the next few days.

I am currently seeing Dr. Arthur Bookman at Toronto Western Hospital. His research specializes in Sjogren's Disease. I think that it would be great to get in touch with him, should your son display any symptoms and signs of the condition, considering that for some BD patients, Sjogren's manifests as well.

Sending wishes for good health and peace.

UK

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My 9 year old son was diagnosed last year and I was told by Children’s Rhumetology that no other child has his disease..

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THank you, children's Rheum. also looked at my son during his Kawasaki episode, he was one of 12 kids in 1998 to have those horrible kawasakis, they went away, yes, but the damage to blood vessels caused him lifetime sickness, and I have another someone who has child a decade forward with the Kawasaki, he too has complications after the fact...I wish your son the best, do write to me, I have learned much about Neuro Bechets now....I hope your son will have continued eye check up, please go to Dr. Behzad Mansouri neuro opthmology on Pembina, and very important that you find yourself Retinal Specalist for life...there were changes to my son's Retina, as we found out after the fact, but he did not know it...predisposed, he had eye occlusion, and now irreverisble eye damage, blind spot permanent loss of vision...no one in Child rhemt. at the time at the hospital alerted us that he should be followed for life!! It is only now doctors understand the Kawasaki disease that they are cautious for children...the Kawasaki and B.D. are similar in etiology - HLAB 5 genetics...I hope that you will write to me...thank you...

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I am also in Winnipeg!

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Thank you sam0511! Your comment provided a lot of reassurance, as well as warm fuzzy feelings in the heart.

Hoping that you are well and happy, and wondering where on this big, yet small world, you are located.

Take care!

UK

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Ye I am in the UK - smack bang in the middle :)

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BD centres/ hospital divisions AND British television?!? Lucky you! Have a great day comrade!

UK

P.S. I am in no way being saracastic. I love British shows. You guys and girls have an awesome sense of humour. : )

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*sarcastic

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It helps to have a sense of humour when you have a condition that no-one who doesn't suffer has ever heard of. Sarcastic is my kind of humour!

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Hi there, I’m in Ottawa. My family doctor thinks I have Behçet’s. My previous doctor did no investigation into my symptoms and she recently announced her retirement so at least my new doctor is taking it seriously. My Opthamologist and rheumatologist appointments are in June. I’ve done blood, urine and ECG. Waiting for a heart ultrasound, nerve conduction, and MRI whenever they can schedule those. I started a flare last week so I’m on prednisone to see if that helps.

I’m trying to not get stressed out about this and the not knowing for sure what this is and what it’s doing to my body. I feel like my inability to deal with stress has caused my own autoimmune disease. I see a psychologist for depression and it was only two weeks ago that my doctor told me that he thinks I have Behçet’s. I’ve had a really hard time accepting this or dealing with this but I feel less stressed and less depressed about it. I’ve been denying myself to feel what I feel to avoid a huge cry but that was just making me more depressed. So I did a lot of crying to get it out of my system, trying to not ruminate on all of my symptoms, and just trying to go about my life as I wait for these other tests and appointments.

Sorry for going on about it, the pre-official diagnosis stage is scary. I’m so thankful for this group. I hope you’re managing well with your symptoms and health.

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Hi Colleen, as I posted above, from our horrible experience in WInnipeg, with doctors not getting us treatment of azaithporine earlier, the B.D. travelled to his Brainstem, and now he is on Azaithporine after permanent brain damage...it strikes males young the worse, but I cannot stress enough how importnat MRI is!! they needed to do MRI on my son, sooner, not later, it happened so quickly, the attack of Neuro Bechets, so please get a MRI right away to see any changes in the Brain now, put yourself on cancelleation List the very least, or sometimes if possible travel to the US for paid MRI - I recommended this to my son, and he felt let the doctors do their work, well it was too late, now he has 4 MRI's in less than a year...You will find support here, as I did, I also came to know of a test SPECT test from here, that actually tells a true picture of our Brain, and I informed my docotrs, and as usual, they feel it is not necessary for him they have it under control now, but still we are doing what we can on the side, like sending blood/saliva samples for research to vasculitis research in Sinai Hospital, and NIH in United States, they will tell us hopefully more....I wish you the very best, but our Canada Med. system is as I say, good for the common cold, but not for rare diseases, despite me telling that this is what my son has, no one believed, and now he is sick...for example, he had epidymitis, a common trait for young men with B.D., to seven oaks hospital, and before this online, he already had results from retinal vein occlusion at the hospital, instead of putting the two or more symptoms together with headaches, the emergenc staff gave him anti inlfammatory Niproxyn (he had one at home), and that was it, no doctor coordinated and sent our son for MRI - he told them he has headaches...I hope you will do MRI ASAP, !!

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I’m so sorry to hear about the severity of your son’s condition. It’s very scary and the medical community’s lack of knowledge or experience with it makes it that much more stressful and devastating for patients and families. I hope your son is getting the proper treatment he needs now. I hope my MRI is soon and I will call to get placed on a cancellation list to try to expedite things.

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Azathioprine did not work for my son, instead he got very sick and suffered. We took him off last month and sought different advice. He was told yesterday he is in remission and weaning off all of his meds. I’m happy to tell you about our very scary journey and where we are at now.

Sending love

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Thank you for this, it is too early for our Son, since Dec. 16/2017...very worried, he is tapering off Predinsone 1/2 tabl every two weeks until done in June 2018, colchicine looks like is on the way...wishing you and your son the very best...

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Hi Colleen. I feel you, I got really really sad when first diagnosed too. It’s incredibly brutal and so hard not to ruminate, especially when you have no idea what to expect. I also wonder if if “gave this to myself” by eating too many chickpeas and not enough omega 3s or vitamin D.. but we’re both being illogical because zillions are stressed and eat chickpeas and only a select few have Behçet’s.

Stay informed and on top of your doctors and you’ll hopefully find a new normal and routine once you get the right treatment.

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Hi Colleen6082,

I'm sorry to hear about how your former doctor didn't pay as much as attention to your symptoms as they should have. I understand how frustrating that can be. I once had a doctor, who at my every symptom complaint, said: "Oh you're young and skinny. That's normal for you." -_- Frustrating right?

When it comes to flares, I agree with you when you say that stress is a huge trigger. You mentioned that you feel that your inability to deal with stress has caused your autoimmune disease. One thing that I've learned is that stress management is something that neither of us is born with. We have to learn it. Perhaps you didn't have the skills then, but you can learn them now? I know that I definitely had to, considering that the majority of my day is spent with pain and stress reduction.

Also, a part of me feels compelled to say that you in no way caused your autoimmune condition. During the beginning phases, the mind goes on a rampage trying to find sources/ reasons and unfortunately it often ends up with self-blame and depreciation. I blamed myself as well, thought of everywhere I went wrong, and allowed this condition to define me, making myself feel diseased, flawed and defective. I've found that as time has gone by, I've had to remind myself that my condition is not me, and is entirely separate from me. It is simply something that comes and goes. This has helped.

You mentioned that you started flaring last week. I'm in the midst of one as well. I've been looking into holistic ways of reducing pain, and the one that I'm trying at the moment is CBD oil. I'm finding that it does a good job when it comes to relieving oral ulcer pain and calming the anxiety that builds every day, when internal pain has now assumed the role of your alarm clock, greeting you every morning, even before you've fully popped your eyes open to start the day.

I hope that you are feeling much better now and engaging in some much needed TLC. Take care.

UK

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Thank you so much for your thoughtful and compassionate words UKToronto. It’s been 2 weeks and 2 days since my doctor told me that he thinks I have Behcets and since then it’s been a huge processing for me. I’m working on letting go of feeling bad or blaming myself and trying to focus on what I can do which is taking care of myself, keeping my stress down, my nutrition and good sleep. I also did some grieving because I guess I just didn’t want to have an autoimmune health condition not that anyone wants one or we get that choice but I feel like I have enough with my ptsd and depression. So I have to give myself credit for everything I’ve gotten through this far and know that I have the strength to handle this with the support of my doctors and psychologist. I also did some bargaining with God I as in hopefully I’ll get the good Behcets the one that won’t kill me, or maybe I could get 10 more pretty good years out of this. I agree fully that we’re not really taught how to cope with stress and I’m recently (and still am currently) taking a mindfulness and meditation course and I’m making it a priority throughout my day to help manage my anxiety. I find it’s helping to calm me so I’m going to keep that in my daily routine. Our weather is finally getting a bit warmer and my goal is to get out and do mindful walking. I’ll keep the CBD oil in mind as an option. I’ve heard it’s very effective for anxiety and lots of other conditions. Thank you so much for your kind words and I wish you the best in health and healing.

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We are also managing my sons Bechets with Vegan diet and CBD

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Hello, we are from WInnipeg, MB - Our son has been diagnosed for Severe Neuro B.D. Brainstem involvement - no one knows the disease, in June 2017 finally we convinced our family doctor to get us a rhematologist, and same month this doctor failed to put my son on Azaithporine (despite eye involvement already in addition to GU, Canker Sores, epidymities, etc...and elevated RH Factor 16.2, he was always positive in Rhematoid Factor since as a child with Kawasaski Disease, the very child vasculitis that has not turned into adult B.D. vasculitis, same blood vessels), well, here we are in since Nov. 2017 - his first big attack, left him deteriorated speech, balance, coordination right hand side, and problem with optic nerves, and retina....life is difficult, but no doctor in Canada was able to put together the symptoms until he was bed ridden, then at the hospital we had rheuma.neurology team gathered around him, and there they were convinced by myself, his Mom, that indeed that is what they will put down the diagnoses....if you can actually believe this, I am so angry, they let it go into his brain before ID this horrible disease for all of these years...my email is sghuttora@shaw.ca, if anyone wishes to write...

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I’m so sorry for the horrible experience your son has had. He’s got a loving mother who will fight for him. Sending love and healing thoughts to you both

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thank you so much, if you know you have symptoms, you have to self advocate and pay for tests personally, and submit them to your doctors, they will love the work others done for them....my son did go to the doctors as they appointed him, but like many, everything was normal, his family doctor told me "he is a healthy kid"...not; I knew something was very very wrong, I told our young man to go to emergency even, sit there until someone sees you and maybe someone will start the process of correct diagnosis, but he was like, I am seeing enough doctors, what will happen emergency dept., they will look at me and tell me to go home eventually...but this is the regret I have with him being young, a little more self advocating on his part from his perspective could have saved us also..but when he was baby, I took him to doctors, now, he is adult, I cannot pick him up anymore, and I think that being young people always think they are ok....but in their heart they know something is not right, denial..if that is happening to anyone here...please go to Hospital emergency and don't leave until they find something....Biopsy is often the best way to find out diseases, yes, it is invasive, but sometimes that is the only way to find out to control the horrible diseases....

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There's a support group on Facebook for Canadian BDers -- you can find it here:

facebook.com/groups/Behcets...

You'll have to ask to become a member.

Cindy Butt Foster and Tracey Jane are two of the four admins for the group, and they've been helping people in Canada get info for a long time.

Hope that helps,

Joanne Z.

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Hi Joanne, I tried the Facebook link and it’s not working for me. Do you have the full name for the Canadian Behçet’s Facebook group? I can’t seem to pull one up in the search bar unless it’s a secret group and that’s why I can’t find it. Thank you so much! By the way I just ordered your Behçet’s book on Indigo, can’t wait to get it!

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Hi Colleen -- just sent you a private message.

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Hi, thanks for taking this message, if possible, could you please tell me also how to join this support group...Our Doctor in WInnipeg tells us that there are about 12 B.D. patients, but my son is the only one with N.B.D. we are terrified...

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Hi Ashveer, I'm really sorry to hear about your son :-( There are many more BD patients in Canada than 12 -- there are 280 members in the Canadian group right now, altho not all of them are patients (some are parents, spouses, etc).

If you can, please send me a private message with a link to your Facebook account, along with your email address. I'll forward your information to the person who runs the group and she'll be able to add you (they stopped listing the group publicly because so many scammers joined and caused problems).

Hope this helps,

Joanne

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Hello Joanne, I have not got the link yet, sorry, if Don't know how to receive a message on this board...will you pm me? tks I sent my email, also...please let me know how to proceed?

tks

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Hello, thank you, I just sent you PM, and please do respond to my support...we are terried, we need to understand Genetics of our Son, Ashveer so we/he can be helped and not have worse prognosis...he is on azaithporine but he has HLAB5/51 then, I hope his doctors are attentive and do something before he relapses, not after the damage is done...how we get tested for HLAB5/51 when the doctors do not refere us...thank you...

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Hi Joanne,

Thank you so much for sending this link!

I'm having a little bit of trouble accessing it on my phone, but will try to do so from a computer to make sure that the issue is not on my end.

UK

P.S. What kind of person would scam a support group for people suffering from a medical condition? -_-

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Hello, Can you please send me this FB link? My 16yr old was diagnosed with Behcet's last yr & is having a tough time coping with it lately. I think knowing about others who are dealing with similar issues might help.

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I've tried to get in touch with the person who runs the Canadian FB group so she can add the people who've asked about it, but she hasn't responded.

Have any of the people who asked me to get them into the group actually been added yet, or heard from the group's admin? Please let me know (Ashveer? Colleen6082?)

Thanks,

Joanne Z.

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I sent her a fb message and she requested to be my friend but I’m waiting to be added to the Canadian group.

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OK, at least that's progress. You should PM her by the end of the week if you still haven't been added yet.

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Thanks. Please keep me posted. He's pretty much become a recluse. Do you know if anyone here is in their teens (& French if possible, but not mandatory) dealing with this? We got an apt with a psychologist next month, but I don't know how open he will be to that.

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Hi QCbd, I don't know the answer -- you may want to do a new post with just your question (not as part of a thread), since more people will see it that way.

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Hi QCbd,

I'm not entirely sure if we have Canadian teenagers on this forum, but I am almost 100% sure that I have encountered posts from teenagers on this platform and from parents of teenagers.

I think that this would be a wonderful idea for a post. Perhaps you can consider putting one up? Fingers crossed, you'll get a few responses.

Sending good wishes.

UK

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Thanks all.

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Hey there! :) in calgary. Pre diagnosis. Waiting to see rhematologist. :( takes so long for doctors to believe me. Yep waiting game for me now. I too wish we had medical advancements like the UK. They're light years ahead of us. Believe it or not lol

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Hi Scared, about Calgary, if you read the posts here, we are in Winnipeg, but my son went to Rocky View Hospital while visiting his grandparents, suddenly had serious N.B.D. diplopia, ataxia, coordination, brainstem lesions/first attack - can you believe it they admitted him overnight and did CT Scan and determined that "lesion" likely in Brainstem, need MRI, since he is from Winnipeg, he must travel to Health Sciences after flight home right away, that was Sunday, he ate supper, and off we went, Calgary Rocky View did not start the MRI proceedings because he was to be in Winnipeg, they sent him with file/notes and URGENTLY informed to go right away, well at night at HSC Hospital, a resident neurology came and they were like "we don't think MRI is necessary yet, (Rocky view put a patch on his for diplopia!!), we begged and finally, the resident looked at me crying mom, and said see what I can do, well, he did the MRI and they found brainstem inflammation, BUT by that time, his speech in stroke of Bechets got worse, and now it is permanenly damaged, he sees speech therapy...he noticed his speech slowing down at the emergency in Rocky View Hospital with the check in clerk and she was asking him questions while he was shaking and speech deteriorating, his cousins helped him...the time wasted in flights and wait at the HSC, made my son permanenly of speech problem for life, and balance, motor skills, on RIGHT Hand weak/permanent damage...off work he is...In June his rheumatologist failed to put him on immunosuppr. despite B.D. retinal vein occlusin, and sores, rash....it is sad about Canada, and now finally we saw neuro opthomologist and he felt sad to see my son, and he said "believe me I am working very hard to make patient doctor communication better" too late for us...please don't waith for rheumatologist or neurologist, go to MRI right away!! do your own tests, blood, skin, biopsy, go to states if you have to, and the Genetic Test HLA B51/5 that will tell you lots of details to manage yourself, before the years the doctors will tell you...it will be too late, my son was sick with B.D. for nearly 8 years, before anyone was convinced of and they finally believed me and put NBD as his diagnosis, as you know B.D. is clinically diagnosed based on symptoms, there is no single test, but these above tests can lead all in the same direction...that Gene, put together will complete the picture...take care

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Wow. So sorry about all of this nightmare your living. A private MRI here is 900$ or more. I actually told my Boyfriend last night that maybe I should save to do one privately, it could take me years to get in. My rheumatologist app is July. And my rheumatoid factor has come back negative. But I KNOW something is wrong. This is my body. Fortunately I haven't had any eye involvement. I pray for u and your son, if there is a prayer out there. Poor guy. It sounds horrific. 💔💔💔

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I believe Behçet’s patients have normal blood work, nothing high in rheumatoid factor. Keep pushing and take photos of ulcers if you need extra proof for visits!

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So far my blood work is normal. My doctor is testing for another antibody and some STI’s just to rule them out. He told me that with Vasculitis it doesn’t show in the blood work. From what I’ve been told you have to rule out other diseases in order to help pinpoint Behcets. But I think it’s definitely possible to have more than one disease present. I was sure I had lupus or ms and because of my blood work being normal I think that rules out lupus. I guess the MRI will help rule out or in, the ms or neuro Behcets. It’s really stressful. I think I’ll feel better once I get a diagnosis and then I can deal with whatever that is. My rheumatologist and opthamologist appointments are in June. I’m waiting to find out when my nerve conduction, heart ultrasound and MRI tests are. Wishing you the best and I hope you get answers soon. I’m so thankful for this group so that I’m not alone.

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Hi ScaredSad35,

My childhood was spent listening to country music, so my ears always perk up at the mention of the city Calgary.

Good doctors, who are not dismissive, are hard to find. Hang in there friend! While waiting from one appointment/ doctor to another, I've been doing a lot of research. Unfortunately this seems to be one of those conditions, where you yourself have to get into the driver's seat to make the car go anywhere, let alone win the race. You seem tenacious and determined, which is awesome! : )

Does the rheumatologist that you are waiting to see specialize in BD? I hope so! How long until your appointment? Here in Toronto, I'm averaging a 3 month wait between appointments for each specialist. Hoping that it's quicker out west.

Take care and try not to worry too much.

UK

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Hi there :) yahoo! Lol. I have to see the rheumatologist in July. I haven't a clue if she specializes in BD. the GP who referred me to her was reluctant they would take me on due to my negative testing for rheumatoid and thyroid. However I told her that i KNOW something in my body isn't right. So she referrred me and they called soon after. Compared to some of the comments and posts here I feel I'm a milder case, feeling blessed for that. I've been logging all things happening to me and my diet changes as well. the average wait here is about 4-9 months for a specialist. My symptoms have calmed down for a while here so, I'm not feeling as crappy about it

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My doctor told me that Vasculitis (Behcets is a form of that) doesn’t show up in the blood work. I wish all doctors knew this so people don’t have to go undiagnosed and suffering as they try to figure this out alone. So far all of my blood work is normal and I have a few outstanding results I’m waiting for. I guess it’s good that more conditions aren’t showing up at this point like lupus but ruling out these other diseases is part of the diagnosis for Behcets from what I’ve read up on. Good luck to you and I hope you get answers at your appointment in July.

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Hi ScaredSad35,

I'm really glad to hear that your symptoms have calmed down. I've also just stepped in to a calm phase. I'm enjoying each minute (literally), because you never know when the next flare will pop up.

I hope that you get to work with a rheumatologist who is proactive, engaged and understanding.

You mentioned that you log things. I was wondering if you could help me understand how to track symptoms and draw correlations between them and what you eat. How do you track your pain levels when you're experiencing multiple different types of pain at the same time? And how do you pinpoint what foods were triggers? I think that this is something that I am weak at, and would really appreciate it if you could shed some light on a good way to do it. Thank you!

Take care!

UK

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Hi! I'm in Toronto, a year and a half into my diagnosis - after 10 years of chasing one. I'm still searching for the proper drug treatment - colchicine stopped working about 6 months ago and now my rheumy is thinking of trying out one of the immunosuppressants. I've also tried to address my symptoms through diet, meditation, qigong, and cannabis (CBD).

But I'm one of the lucky ones - no eye involvement or neuro issues. Though, lately, I've been experiencing inflammation in my small intestine and swelling/pain in my joints. This disease is so exciting and unpredictable ;)

The Facebook groups are very helpful.

Love and support to all my fellow BD warriors!

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How did the cholchine stop working? Was it sudden? What symptoms were prominent?

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It mostly helped with my mouth and (occasional) genital ulcers to the point where I'd go weeks without a flare. But then, suddenly, I started getting them more regularly again. I increased the dose to 3x a day but that didn't work.

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Thanks for letting me know 😀

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Hi bobbytheodore,

I hope that you're well.

I'm also located in Toronto! : )

10 years is a long time! I can only imagine how it must have felt to receive that diagnosis.

If you don't mind me asking, who do you normally see for your BD symptoms? I'm currently seeing a rheumatologist at Toronto Western Hospital and a family practitioner at Albany Medical Clinic.

Symptom wise, I've also experienced intestinal inflammation, and pain and swelling in my joints, alongside with oral ulcers, lung inflammtion and a myriad of other symptoms that come and go. You know how it is. : ) Have you had X-rays/ ultrasounds/ MRIs done for your intestinal and joint issues? Intestine wise, I found that I have ileitis. Joint wise, I found that there is fluid buildup, inflammation, and tears in the meniscus in my knees. The tests really help make you feel sane sometimes, in the sense that they serve as proof for the things that you know are there, but no one else sees. I can provide you with the names of the specialists who did my procedures, in case you want to take them to your doctor for a referral. Let me know. : )

I've also tried to address my symptoms through diet changes (going gluten and dairy free), meditation and CBD (tinctures and sprays). I'd love to learn more about what techniques and products you found to be helpful. I would also be more than happy to share information on what I use as well, if you are interested.

It's raining today. You know what that means: The joints are probably going to act older than they are. Hope you're warm!

UK

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More Canadian love from me. I was also surprised by a lack of support groups for Behçet’s, Vasculitis, or even autoimmune disease in general. I wouldn’t know how to start one but I think it would be wonderful, even if it was not specifically Behçet’s related (though ours is pretty special). I went to a herpes meeting when I was first sick (and misdiagnosed for herpes) and it was so so so helpful. Hopefully something gets going! Check out Vasculities Canada- they seem to have some events every now and then, including a talk last year about Behçet’s.

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Hi ColdNoodleSoup,

Thanks so much for the suggestion!

I'm in the same boat as you. I think that it would be wonderful if there was an in person support group for BD patients.

How to start one and get one running, when so little is known about the condition in general? Now that's food for thought!

Take care!

UK

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I am in Winnipeg and my 9 year old son was diagnosed last year.

I am happy to talk to you about our journey and how we are now finally managing his disease holistically.

💗

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Hi Briannablaire, thank you that is so awesome that you are here with us, my email is sghuttora@shaw.ca, do write to me and we shall introduce ourselves to each other and our wonderful children - My son has Kawasaki Disease as a child, Winnipeg Children's Hospital IVIG given, at that time after we came home, he had innated immune system for sure, as he was suddenly prone to so many allergies, and his neck glands in neck were swollen, he made it through high school and college until now....he has Neuro Behcets, it would be nice to hear from you...our son is 29 years old...

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I wonder how they missed my son for four years? how your son got so suddenly diagnosed? this is why my son has now Neuro Behcets, I went to Rhumatologist Dr. Rupneet Puar and told her my son has Bechets, he went to Concordia Hospital for Epidymitis, had retinal vein occlusion, Dr. Mathen...he did not look after my son to put him on the right path with MRI exam...no doctor was helpful to my son....I would be interested to know how you got so lucky!! we had the worse luck, even Dr. Ibbitt downtown, retired now, gave my son constantly valtrex for reoccurring canker sores, which were bit unusual in frequency....it is just too sad for us it is beyond comment now...any way our email is sghuttora@shaw.ca, please do write, love to hear from you..

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Hi Briannablaire,

What a nice surprise it was seeing your comment! More Canadians! : )

Your son is so young. There are days when I feel like tapping out, and I'm in my late 20s. He must be a fighter! : )

I would love to hear more about your journey and how you are managing his condition holistically. Please feel free to message here on this thread, or privately (if you're more comfortable that way), whenever it's convenient for you. Thank you!

Sending good vibes and wishes for your son and family from Toronto.

UK

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I'm in Alberta Canada. I have no support groups either or support from anywhere 😔It's been extremely difficult for me.

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Hi, likewise in Winnipeg, there are none, but I was told if you phone the Canadian Arthritis Society, they will help you with support, as B.D. has arthritis, non-deforming although...best of luck, for ease.. as per Dr. Hasan Yazicizi, worl's finest B.D. Specialist from Turkey, his video is online, from his expert knowledge, women don't get B.D. as bad as men, particularly, like my son, a young male 29 years...very severe complications...

hope you feel better....

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Hi Biccum,

I'm really sorry to hear about how you've been feeling, support wise. I've been there. Hang in there my Albertan friend. Feel free to message me any time, if you wish to do so. Sending wishes for physical and mental peace.

UK

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