Behcet's Syndrome Society
3,925 members3,325 posts

HI. I'm new here!

HI. I'm new here!

My name's Bliss. I'm Canadian Eh?

I live in a teeny tiny town in an area of British Columbia called The Similkameen Valley.

It's just as beautiful as it sounds.

This is going to be so long and I'm STILL leaving a TON out.

Scroll to the bottom for TL;DR version. haha

I moved away from city life (Vancouver BC) a few years ago because my disease is more well looked after/managed here in a small town. Having an auto immune/neurological disorder in a city of 2 and a half million people was kicking my ass.

I caught every cold, flu, infection you NAME it. I was constantly bombarded by sickness so not only was I having to deal with having Behcet's ( I actually have Neuro Behcet's and right now we're trying to find out if I'm parenchymal or Non-parenchymal) but I was having to deal with everyone's sickness as well and I was put in the hospital on more than one occasion.

In fact I just got out on Oct. 9 from a 5 month hospital stay.

My first flare was in 1997/98. It started out with sciatica that made me lose some work but seemed to go away on it's own.

My second was a year later and I lost my job because of it. No one could figure out what was wrong with me. I wasn't put on any medications.

Basically my legs/hips were so swollen I couldn't walk.

Doctors said I had sciatica and told me to take robaxacet and ibuprofen and call it a day.

When I went into emergency a month later and had to get shot up with demerol and stayed the night they took me a little more serious, but not much.

Just as strangely as it started, it went away.

Then my 24th year I was in a new relationship and had a new job and that all came crashing down as I spent 8 months completely bed ridden.

I lost 50 lbs and went from a chubby girl to pretty much normal sized because I just could not eat anything. Nothing would stay down.

My partner would come home from work on his lunch break to put me in the warm bathtub (genital ulcers so bad that I couldn't go normally as they would burn. No one would help me with any kind of medications until years later a doctor suggested Xylocaine: A brand with lidocaine in it. That was a HUGE relief and game changer for me.) And I would honestly just go back to bed after that.

I was so lucky to have such a caring and loving partner.

But the fevers and meningoencephalitis with still no medications or doctors help did a number on me.

I had severe personality change and I ruined that relationship. I became and entirely different person.

I don't feel I need to go into detail but I honestly still mourn the relationship 13 years after the fact.

During the time we were together I went from specialist to doctor to specialist. I was told I had herpes (even though all the tests kept coming back negative for herpes) and that I was having reactionary headaches and reactionary arthritus from the herpes (that I didn't have) and I even went to the centre for disease control and after removing marrow from my hip (a brutally painful procedure) they finally confirmed that I had never even come into contact with herpes (the body carries "memories" of everything it has ever come into contact with and looking at bone marrow is like a full history of everything your immune system remembers. Hope that makes sense) and they had no idea what to do with me and kinda shrugged and sent me home. Eventually, it just went away on it's own. But it was 8 months of pure hell. PURE HELL!!! My knees, hips, elbows swelled up HUGE and were red and hot. Walking on my own was impossible. Sitting was impossible. We had to buy a brand new very soft bed for me with memory foam because everything hurt constantly. I was later to learn that I had developed fibromyalgia as a way of my body "fighting back" against itself. I had the ulcers from my mouth all the way to my nether regions. On again off again uveitus. Migraines, Headaches, Cold sweats, chills, fevers, seizure like deep muscle spasms that went on and on and on. I would have to say that out of everything the muscle spasms were the absolute worse to deal with. They went on for hours and hours and all you can do is try (and fail) not move an inch and silently cry. I don't know if anyone else has had to deal with these but they are life ruiners.

Usually, half way through the night I would have to change whatever I was sleeping in, and the extra sheets I kept under me as the sweats would soak through everything.

This whole time was really dangerous and I'm lucky to be here because what doctors weren't looking for was meningoencephalitis or any of it's precursors or symptoms and now that I am diagnosed I know what a dangerous 8 months that was for me.

As I said, it eventually just all went away on it's own. Meningoencephalitis plus 8 months of pain and no medications or any kind or answers took it's toll on me and I became a totally different person and I ruined the relationship.

Fast forward about 5 years.

I just moved from Ottawa Ontario back to Vancouver BC, into a new home with a new relationship and a new DREAM job of managing my own hair salon on one of the best streets in the best area of downtown Vancouver.

My boss turned out to be absentee, turns out the salon was a front. I'm leaving out a lot here haha.

Lost my dream job, and subsequently my new relationship because they didn't want to help me out while I tried to get another job.

Had to move 2 more times and got a new job.

This was all within about 3 months.

I started to get sick again. (Now that I am diagnosed and know so much about my disease I know that stress is one of the top reasons why I start to go through a Neuro Behcet's flare.)

I knew the symptoms. I was scared.

So I just typed in all the symptoms I was having into google and out came:

I believe I had what is called a "EUREKA" moment.

I immediately printed out what I had found, went to the closest walk in and actually had a doctor listen to me.

He didn't see anyone else that day and between him, his nurse/secretary and myself we set up a game plan.

I saw 2 specialists in 1 week before I got so ill that I had to phone my family and tell them what was going on.

They insisted on me coming home and them helping me. So the very next day my brothers came and picked me, my cat and the small amount of possessions I had up and I moved to a smaller town 6 hours north of Vancouver.

I was officially diagnosed via pathergy test and I spent about another 8 months flaring.

Medications of all kinds came into my existence and some of the problems were finally helped!!! But not all.

Eventually, as it does, it goes away and every single time I am left with what I feel is a little less of myself.

I'm 37 now. I decided to search out and join a community of people with my disease on my birthday today. ha. Weird what turning a year older makes you seek out.

I am on my 9th flare of my life now.

I've been bedridden since Sept 25th 2012.

This is the longest flare I have ever had.

The time between flares is getting shorter and shorter and my time spent flaring is getting longer and longer.

I'm on disability.

I have 14 specialists/doctors.

I spent 5 months in the hospital from June 1 to October 9.

When not in bed I use a wheelchair or walker depending on how bad things are.

Medications I'm on: 30 mg 2 times a day of hydromorph contin, 32 mg 4 times a day dilaudid, 10 mg baclofen (for seizure like muscle spasms) 30 mg cycobenzaprine (muscle relaxer), 20 mg citalopram once a day because I'm severally depressed/have suicidal thoughts (I'm just so tired of "living" like this. I literally feel like an eating, shitting, sleeping machine). .6mg of colchicine 2 times a day, 20 mg of amitriptyline once a day for hyperalgesia and allodynia (nerve pain) and also treats depression and suicidal thoughts and helps with my Fibromyalgia.

I also have my medical cannabis licence and a family member grows for me (with full government permission). I use a vaporizer or I ingest it via tea or food.

So far the colchine has caused panic attacks AND NOW my hair has started to fall out!! I'm so scared because I've been growing my hair for 6 years and it's down to my hips and it's starting to come out in little handfulls now. I don't know what to think, say, do or feel about this.

I been doing a TON of research on my own and my doctors and I all think that it's time for another plan of attack medication wise because none of this is working out very well at all.

Never mind the fact that I am on 3 different medications that cause weight gain and I've gained close to 50 pounds this year which makes me feel absolutely dreadful about myself. I've done a lot of experimentation over the years with healthy eating/lifestyle and I've found that a diet as close as I can get to organic, raw vegan is what really helps me a lot. So it's not that I'm eating cookies in bed all day! But it's an expensive diet to maintain. I am on disability. Literally every single dime I get goes into my diet. I'm too sick to go anywhere anyways but yea, I don't buy anything superfluous at all. I have this dream that I'll find an organic farm for sick people to go live on and I'll eat the best food ever! I want to be a permaculturalist so bad!

I'm sorry this is so long!!

Here's the TL;DR version:

I have Neuro Behcet's and I'm so glad to have found a community of people that know what I am going through and may have some light to shed. In the very least, the feeling of empathy is pretty fulfilling. :)

The image attached is me and my half wolf half alaskan husky Freya. This May I had to give her up to my brother (so thank goodness she's still in the family) because I am bedridden and unable to look after her needs. I've lost so much this year but I'm still here.

3 Replies

Hello my lovely - I don't have any wise words at the moment (sometimes I do but most times they get lost in the journey between my brain and my mouth) but I just wanted to welcome you to the community and to say




Welcome Bliss

I must say such a lovely name, well what can I say goodness I feel for you so much.

BD is a terrible condition very painful 24/7. I was on colchicine too my hair was falling out in clumps too I found this drug had no affect on my condition and like you I suffer with server ulcers both mouth and down below which I suffered with every day since 2006 like you the pain and quality of life was terrible however I can say after coming off colchicine as I started a new drug 3 months ago called tarental 400

And have had only 4 ulcers in mouth and several flares below however the pain and size of ulcers have reduced and I am now getting a break between flares amazing. The rest if me is not good though yet to sort meds out for that I too have fibromyalgia and osteoporosis and sjergens syndrome. Goodness my term to go on. Lol.

We are all here for you, you can pm me if you want to chat more.

It difficult like you and many of us we get so down and don't post much but we here in the back ground.

Take care hugs xxx



Hello Bliss,

sch a cute dog!!! My dog is my lover atm!! dogs help you so much,never let you down,best day of my life getting my puppy lol! lots of loves and hugs hope you feel bit better xx


You may also like...