Hi there. I first want to say that this site is wonderfully done with alot of information!

My name is Jayme and I am from British Columbia. I was diagnosed with Behcet's 5 years ago, though I am sure I have had it since birth. My Mother, who passed away at age 42, I am sure had it as well, though was never diagnosed. I recently just came back from a week long Behcet's Study that is being done at the NIH Centre in Maryland/Washington D.C.

I am currently on Imuran as my main drug (as well as others) and have had some success with it. However, I have alot of neuro problems which I am having zero help with. It's as if no one believes me that I have them. I feel at a loss. If anyone knows of a good Neuro out here, please feel free to email any info.

Also, I wanted to add my personal note on having this illness. I have never even seen a small glance of a remission. Maybe as a child, but since things got really bad (including neuro stuff), I am on a constant rollercoaster that never stops. I have to wonder, do people really go into remission with Behcet's? I am on a couple of support groups, and I don't know of anyone who has!! I keep hoping it can happen!

Hope you are all well and staying strong!

I call myself a prey of vasculitis - Microscopic Polyangiitis. I am an Australian and have just made a website called 'Vasculitis the disease that deceives' www.vasculitis.net.au to discuss '

patients’ perspectives on their medical treatment... I believe that to be responsible for our own health we need to be able to participate in decisions made about our treatment. In theory we are, but in practice I was silenced for a while, so I publish this trusting it will help you and others...

I offer this trusting it will help. Please feel free to contact me with criticisms, advice etc if you wish.

Geraldine RobertsonTel: 03 9486 1808Women's Web - Women's Stories, Women's Actionswww.womensweb.com.au

I am a 56 year old woman, living in North Vancouver, British Columbia, Canada. I was diagnosed with BD in early 2006, but apparently have had this disease since my late teens. One of my brothers told me that I had a severe case of strep throat when I was young...which I do not remember. I also had strep in my later teens.

It has been a tremendous trial of my strength and ability to learn acceptance. I never personalize this disease, it is not "My" disease, it is an uninvited guest...here for life, so rather than fight it, I am learning to go with the flow. It is frightening and unpredictable...but so is life.

Be well...live, love and laugh...seems to be the only medicine that sometimes works.

it started with lft side numbness, told it was a rt side brain tumor. stroke, autoimmune diseases ruled out, lyme disease ruled out had x4 lps, no virus, parasites or bacteria. i was physically fit. had rt breast ca in 03, fine from that, had radiation only. this disease is terrible, i pray for anyone with. a lot of people think its in the mind. only the person going through will understand.god bless the babies who endure this. when you have worked all your and could lose everything being sole provider it more than one can bare so if i miss a letter or misspell a word, please its the neuro deficits.i will fight to help decrease the suffering of another. pray us all, thank you

Hello, I haven't been on this site in quite some time.  One thing though I would like to share is from my last message there has been a lot of ups and downs regarding the suspicion of Wegener's Granulomatosis when I had my eye surgery April 29, 2009.

Just a month ago, my fourth c-ANCA test came back negative for Wegener's but my nephrologist knew that most types of vasculitis are difficult to diagnose.  She advised me that the negative results do not necessarily rule out Wegener's.  This was when I figured it to be one of those "hide and seek" diseases... catch me if you can while I destroy your kidneys, lungs, skin, joints, etc.  She made the diagnosis based on what had happened in the past and current flares causing me to lose feelings in my arms and legs, left ankle hurt to the point where I couldn't go into work but since I've been on the medication the prednisone and methotrexate have helped tremendously.

For those who have struggled with getting the diagnosis, I completely understand, now that I'm already there.  That waiting period since my eye surgery last April was the hardest of it all.  For something I thought was truly an eye problem, I then learned that my eye was the result of the problem, not the problem itself.  I often wondered why I was told serveral times that I had 20/20 vision but yet I couldn't see!

I was even handed a warning letter from the Human Resourses Department at my job back in November 2009, stating that there is no excuse for me to be failing compliance as an experienced employee at the bank.  Also, I was told to be more careful and read the documents extra slow if I had to.  I did that and I was still messing up what I was reading.  I had no idea what was going wrong with my health but I knew enough to say I have to get it fixed!

I'm currently on short term disability to get used to the medication and side effects. 

Lise , IROQUOIS FALLS, ON CANADA

 29year old female, mother , ISOLATED SNC VASCULITIS,

muscle weakness, walk with cane now for 4 years

It all started around age 25 I started falling a lot, then my balance got worse and began to lose weight and got really weak.  I was not remembering the same.  I focus on my legs the most because I have difficulty walking.

I just recieved a diagnosis and I am now taking Prednisone and cyclophosphamide.  I am hoping that this helps me out if not a lot, a little I WILL TAKE. (It's only been 2 weeks)

This has been the toughest 4 years and I am thankfull for having such amazing doctors.  Having a diagnosis sure explains a lot.

Lise

i was in sunnybrook for 7 weeks and westpark rehab for another 7.im 35, was in great shape,dont smoke or drink.after 4 weeks in pain anr paralyzed in the arms and legs i was treated for gbs, then told i didnt have gbs but were unsure still...however they were going to treat me for "non systemic vasculitic neourpathy" i took cyclophosphimide for 6 months and just got off of it last week. any thoughts ? do i fit your catagory?

i was told i had vasc . feb14th 08 my dr said they need to work on my hep-c before doing anything? my hep treatment did not work , what to do    thank you tim

Age, 58, male, wegener's g.

In Jan. of 2007, I experienced flu-like symptoms, including congestion in throat and nasal passages....by Feb. a nagging cough developed with blood in discharge from throat and nose..... my doctor just took over the practise and is very personable and intelligent....however, after numerous blood test and visits over the Feb/07-May/07 time frame, I think he was beginning to think it was in my "head"!!.....I repeatedly complained of achey skin..as well as joints and muscles...I told him that ibuprophen (6-10/day) was what kept me going, to relieve discomfort.....In June/07, while visiting my Dad in Ont., my symptoms got so bad that I literally couldn't get out of bed or a chair without unbelieveable effort and pain, stiffness etc. My wife and I discussed going the hospital there, however, decided to wait a couple more days when we were returning to Calgaryl

Apon arriving at my doctor in Calgary, I told him that regardless of all the blood tests etc, that something was terribly wrong with me and that I thought that "I was going to die from it" and I meant it!! He said to told on a minute and returned shortly, advising me that I could see a rhumatoid arthritis specialist in 30 minutes (which was quite remarkable). The specialist agreed to wait for me to drive downtown (Calgary) It was Friday at Noon.

He put me throught  a physical exam and said "I don't know what your're doing here!" I said "I don't either, but I am terribly sick." He advised to go into his office, where I explained everything that had been happening to me over the past 6 months. He sent me for another chest exray and more blood tests....I had just had a chest exray and blood work 3 days prior. Something in our conversation  must have clicked with him as he ordered the ANCA test. The following Tuesday he phoned me at home advising that he was quite sure that I had Wegeners.

A hospital biopsy of my lung was

Marina Mejaki

250 Murray Hill Road,

Wikwemikong, Ontario

P0P 2J0

I am a female,57 years old, diagonsed with Wegner's at the age of 40.  My main symtom is a saddle nose, and my left lung is damaged a bit.

I have been married for 36 years, I am a mother of five, a grandmother of 13 and one on the way.

With the Wegner's I have had two rounds of chemotherapy, with good results.  After the last round though, my white blood count went too low, so I've been told I can't have any more chemotherapy . So all I have to depend on now is prednisone which I have been on for the past two years, since my last flare up.

In the last few years I have been using every avenue available to me, Spiritual healers, traditional healers, traditional medicines, so I have surpassed the 1-3 years that I was diagonsed with. 17 years and going strong. Thanks to my Creator and the prayers of my people,(relatives, friends and community) ,and of course the support of my husband,children, and my brothers and sisters.

This past year I have been feeling unwell, tired all the time and have had colds quite often, maybe my time is near, who knows? But I am very thankful for the extra years that were given to me. At this time I really stand by the A.A. slogan "One day at a time"

I have central nervous system vasculitis secondary to lupus.  I have become progressively ill over a period of 5 years and only recently received a diagnosis after many tests which showed multiple diseased arteries in my brain and two large aneurysms.  The doctors decided not to operate at this time as the inflammation is too great.  I suffer terribly with dizziness,vertigo, weakness, tiredness headache and joint pain.  I am now about to start treatment with prednisone and imuran and hope this will lead to a remission in which case they may be able to repair my aneurysms.I am very interested in hearing from anyone who has had experience with this treatment or who has experienced similar symptoms as it  seems my situation is so rare even the doctor's do not know what to do with me half of the time. Until then to everyone suffering with this illness hang in there it is all you can really do.

Hi, my name is Jenn and I am nineteen years old, from Manitoba, Canada.  I have been undergoing treatment for HSP Vasculitis since January of 2009.

I was going to university in New Brunswick when I experienced my first flare. Not knowing what was going on or why I was in so much pain, I went to the hospital.  They did some blood and urine tests, and luckily I was admitted to another hospital, where they did a kidney biopsy right away and so diagnosed the vasculitis.  I was released from the hospital within three weeks and came back home to Manitoba for extended treatment.  

I am now living at home with my parents and going into the city every few weeks for blood tests and doctor appointments.  We are still messing around with medication, trying to find the right combination.  I am unable to work.  I tried doing an evening course but was hit by a huge flare that remained untreated for about a month, which resulted in my failing the course due to being bedridden.  

I've just experienced my first stretch of multiple "good days" in a row since this entire thing started and am tentatively starting to make small commitments again. 

I find myself frustrated sometimes with the lifestyle changes that have been thrust upon me, not to mention the side effects of the meds!  I have gained a lot of weight and lost a lot of strength, and have difficulty breathing sometimes.  Makes it difficult to go out with friends (the few who have stuck around through this mess).

Trying to stay positive, but it's difficult sometimes.  Would love the opportunity to talk to others who are going through the same thing as me.

Rosemary Southard Malone, New Brunswick, Canada.

 My daughter, Allie, was diagnosed with CNS Vasculitis, small vessel, in 2005.

Ralph, Pickering, Ontario , 57, Nov2008 Biopsy test positive for PAN

Dematologist monitoring. Not been able to get referral to Dr. Careete. No visible symptoms, although legs are itchy, burning needles and swollen joints. Some days cant straighten up to walk.

All blood test show normal. Elevated Protein in urine gone away.

Still concerned something is goin on in background.

PAN USA says important to register with Rhumatologist. Unfortunately we are stuck with the referral system. Dont get referred if they think you are in remission.

Too bad Dr. Carettes office wont accept my inquiries of all me to fax pictures and Blood tests. Would like a second oppinion.

Tks

Cambridge, ON, Canada, Age 56, Male, Daughter has Behcet's.

Wow great job on the design of your new site. The site is very well put together and easy to read and follow, lots of information.

My daughter has Behcet's Disease and sits on the board. I have watched her go through so much over the years with this disease. Being in and out of the hospital and not knowing howw you are going to do from one day to the next.

She has shown so much strength going through all this and then to have to deal with being diagnosed with breast cancer just a few years ago, I don't know how she keeps up the positive attitude.

I am so proud of her and I commend you all for what you have to deal with on a daily basis.

Behcet's family member,

Albert