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Seattle Rheumatologist recommendation please

…moving to Seattle WA and looking for a great Rheumatologist and Occular Immunologist. I see Dr Yazici in NY once a year and i have an amazing Rheumatologist (Dr Filemon Tan) and Occular Immunologist (Dr Susan Wittenberg) here in Houston but im looking for local Seattle doctors with experience in Behcets …not just "I saw one when i was a resident":)

I've been seeing Dr. Gardner a Rheumatologist at UW in Seattle for a year. I went through a few different physicians and he is the best I've found so far. He is doing a good job of managing most of my symptoms and seems to care. Overall, my symptoms are fairly well controlled. However, my spreading neuropathy is not being controlled on my current medication so I'll be seeing him again next week. If you go to UW I wouldn't see anyone else. I'm currently looking for Rheumatologist that specializes in Behcet's and I am willing to travel as I'm seeking more information and treatment protocols. What I wouldn't do to have 20 min to pick Dr Yazici's brain. I would be extremely interested in connecting with you about any treatment protocols or research you would be willing to share from Dr Yazici. I also see Dr. Kraus a Neurologist at UW and I can't say enough great things about him. Dr Kraus is very responsive. As for managing symptoms I also rely a lot on my Naturopath Dr Barkshire in Bremerton Wa. She is gem and has at least one other Behcet's patient that I know of. She is fantastic at helping with flare ups and treated mine for years before having a diagnosis.

Finally, some hope.

I have finally gotten somewhere in my health journey. Since my old rheumatologist was rude and unhelpful, I went to one a few hours away. I first spoke with the rheumatologist's secretary type women, who schedules everything. Then I spoke to a doctor who is about to become a rheumatologist, whom is working with my rheumatologist right now. He was so nice, he listened to me, and he was thorough in his questions. Then after he presented my case to the rheumatologist they came in to speak to me about everything. My new rheumatologist is wonderful. I really trust him to help me get better, and to get a diagnosis. He took me off of two medications that haven't been helping at all. He also put me on Humira, which my boyfriend takes too. They did the first shot right there in the office. He also had me get xrays done to check for any bone damage caused by inflammation, which thankfully came out fine. I got blood work done right there in the office too. Tomorrow I am getting an ultrasound of my legs to check for any blood clots. He also wants me to go to a dermatologist, a GI doctor to get a colonoscopy to check for IBD or Crohn's. I'll also be checked for any sign of uveitis. The working diagnosis my new rheumatologist is going with is Behcet's disease. I'm glad to finally have some kind of answer, and finally have someone do tests in every aspect to make sure I'm okay in those areas. I am finally hopeful of my future. I still have a lot to go through, but at least I feel listened to and taken care of.

Feeling dizzy / lightheaded / out of it / shortness of breath before flare up?

Anyone notice these signs before a flare? I don't know if it's just me or not, but reflecting back before some of my flares, I feel a bit woozy, really weak feeling. It's hard to explain the sensation, but it's similar to having low blood sugar or something like that (but it's a different feeling). It's like a sign it's coming on.

It's also worse for me at night, particularly the worst before bedtime. I'm having mixed and limited success with medications. However, my breathing is of overall better quality lately, seems a bit easier to take a deeper breath. The odd thing is I don' t have any of the primary behcet's symptoms of mouth ulcers, eye pain, or genital ulcers at this time... I'm having more "secondary" symptoms lately. Tricky stuff, makes it hard to tell if there is something else going on or not. However, all the symptoms match up under the "secondary" symptoms. A couple weeks ago I had "traveling" gastro pains, which suddenly disappeared, and it seems to have traded with this horrible feeling. I have bad pseudo-acne on my face and back too (no nasty leg ones thank goodness). I'm unsure if is an ulcer, or whether it is some microscopic vascular inflammation, or something else! I hope my rhume can tell me soon!

Just kidding, woke up this morning with mouth ulcers, and also nausea & vomiting. My breathing felt better last night, but I'm not sure how much the puking helped today.

Oh no! I am so sorry you got bad symptoms again just when the others were subsiding! However, I more than understand. This disease causes symptoms that change very rapidly so that as soon as you get adjusted to having one symptom and taking medication for it, it stops and you get another one, and have to deal with it. Behcet's is very confusing that way in my experience.
My flare is starting to subside but I am having the stomach symptoms you mentioned. I am having trouble eating anything because of nausea and remains of mouth sores. Always something with this disease.
I hope it gets better for you!

Julia

"Traveling" gastrointestinal pains?

I thought I was just feeling great and over a flareup... well I guess not. Suddenly, I've had this stomach pain that feels like I have gallstones or something similar (I'm completely unsure what it is). I've had a CT scan very recently, so that makes me feel a little bit better. But the pain is unpleasant. Sometimes it will completely vanish and I will feel okay, and then suddenly it will return. Most of the time it is in that area, but it will on occasion "travel" to other areas what feels like inside my stomach / abdomen. Has anyone had anything like this? I can't wait until I see my GP.

Update : My doctor is saying that it could be ulceration / vasculitis in my gastrointestinal area. I suppose that may make sense. I had a blood test, and I'm having an ultrasound ordered (hopefully fast), so I'll see...

Hello Behcet710; you have the symptoms you described I have experienced. The symptoms of behcet's disease pre-complained of burning in the stomach, and then exacerbation of the disease begins.

Hi sunset. Unfortunately, I believe you may be correct, and your experience seems to match mine. I will have to see with time how this exacerbation takes its course.

Should I trust my doctor?

I have had back problems for about 2 years, oral ulcers for about 9 months, and about 5 months ago my feet and ankles got painful, red nodules on them, and then my feet and ankles swelled up awfully bad. I could barely walk and went to the ER. I was there overnight and in the morning I met with the only Rheumatologist in my town. He said I have some form of an auto-immune disease. I will call this "the beginning". Over the past 5 months I have tried a few medicines. I was on Prednisone since I first went into the ER (about 5 months ago, I just got off). I tried tapering off once a couple months ago and flared up so bad I went to the ER again, and the doctor there just increased my Prednisone and gave me some Tramadol for pain (it doesn't really help at all). After my flare up and 2nd trip to the ER, my Rheumatologist put me on Methotrexate. It started with 10mg once a week, and has now increased to 20mg a week. I have also been on Plaquenil since the beginning. I have gone through a ton of bloodwork and a couple cultures. I am exhausted 24/7 and so weak sometimes. I can barley get any sleep. I get nodules and pain in my hands, wrists, elbows and knees.I am now tapered off Prednisone (even though I am flaring up, and it's difficult to walk). Every time I mention to my Rheumatologist about finding a diagnosis he says it doesn't matter because the treatment is all the same. I have researched Behcet's Disease as much as possible, talked to people, and it seems to be EXACTLY what I have. My last appointment with him he looked at my feet and said "I am not doing anything about this. I'm not going to treat this right now. I just want you to keep up with the Methotrexate. And I'll put you on Meloxicam for the inflammation and pain". I am so torn because on one hand he seems really smart and I want to just trust him. He tells me he knows this is scary to me, but this is the type of disease he works with and it doesn't scare him. I understand he may be thinking objectively but I'm the one living in pain, depressed because I can barley walk and anxious because I am terrified about not knowing what's wrong with him. I told him about Behcet's Disease and he said "Yeah, we can call it that. We can call it what ever we want, it doesn't really matter. The treatment is the same". I do understand that to a point but I just can't stand not getting anywhere. He told me he's fully supportive of me getting a second opinion, and the best place is go is a couple hours from me. Luckily it's where my parents live, so no hotel needed. I am still awaiting a call from him about that appointment, since he said he'd get the referral done and send my records. I'm guessing he's gonna need my signature for that, but apparently they haven't gotten that far yet. If anyone has any advice or insight or info I would really appreciate it. (Unfortunately, my insurance will not let me travel outside of NY.)

Thank you for your reply. I am in therapy right now, but unfortunately I haven't been able to see my therapist in the past few weeks. I believe I see her soon though. It's definitely very helpful though with everything going on. I am really stressed, and feeling awful but I'm hoping my next appointment will give me hope. I'm trying to have a better attitude about it all.

I am so sorry you have PTSD too, that will make it harder! I am on anti-depressants, they help some. when I first got diagnosed, I knew I needed ways to cope and cheerful things to think about, so I bought books by other people with chronic illness. Two I found were very helpful:
The Chronic Illness Workbook, Strategies and Solutions for Taking Back Your Life, byPatricia Fennell MSW, LCSW Her book has stages for chronic illness, comforting things to do for each stage. It really helps. The next one is How to Be Sick, A Buddhist Inspired guide for the chronically ill and their caregivers. This one is a sometimes funny and very compassionate guide on how to live through being sick. There are also ones on yoga that helps or yoga breathing if you are like me and too fatigued to do yoga. There are books of prayers too, for people with chronic illness. I thought I would share that, in case you need tools like these.
My cheerful things are my garden, novels, and needlepoint. I hope that helps!

The sores on your thighs do sound like the disease, I had them on my lower legs, feet and elbows.

Julia

Thank you Julia. It's definitely tough, but there's no other choice but to get through it! I am trying to be accepting of everything that's going on in my body, but the pain and not being able to control/understand it makes it harder. I will absolutely look up some of those books! Thank you for suggesting them. I've really been looking for ways to accept/live with the chronic illnesses I've been dealt with. I hope you are doing well! I am very anxious to get my appointment at rheumatologist new rheumatologists office.

Very New to this, Need a friend...

Hi My name is Rachael, I have been on a long journey with my health and have had several misdiagnoses. I just received biopsy results ruling out Pemphigus. My doctors at the Autoimmune Dermatology unit at John's Hopkins have told me that they strongly suspect I have Buhcet's Syndrome/Disease. This has so far been a physical and emotional roller coaster. They had previously suspected Pemphigus. After reading about Buhcet's, I am more frightened than ever. I was put on 40mg Prednisone and my mouth and other lesions healed up a lot for the first week but now, my lips are starting to blister again. I have other symptoms including joint and back pain but I had always attributed that to my three failed spinal fusion surgeries. I am hoping to meet others here who have been through what I am going through. It would be nice to have someone to talk to.

Hi KellyCrane and Rachael,

Thanks KellyCrane for that reply. I wake up every morning with terrible headaches. I have much worse dizziness and I have trouble walking straight. I have bruises all over, red, painful spots on Humira. I am supposed to be on Azathiaprine but went on half doses because I had bad nausea on it. My left eye is still a bit painful, was inflamed. I am off NSAIDs too for stomach problems. Not sure about my kidneys, Dr. Isn't good about sharing lab results. I am on two antidepressants that don't work very well. I feel very discouraged some days, but try hard not to let it get to me.

I too read everything, trashy and not, sci-fi, fantasy, mystery, romance etc. I read a great
Brandon Sanderson book recently. If you have read other books you like , let me know, I always need new ones. I read books by other people with chronic illnesses, and see how they coped. I also do needlepoint , thinking about learning to knit.
My oldest daughter lives in Portland and loves it. I am in New Orleans with the rest of my kids.
Both of you, Take care!
Julia

I walk to the right mostly not in a straight line. Welcome. There are also talk among the experts that heart problems, back problems occur with behcets. So that may have been the culprit. for the surgeries you needed to have done. This disease is devastating but, manageable.Know that there are a lot of us here. And we try and help each other as much as we can. you can inbox me anytime. day or night. and I can give you my cell so you can text me if you need to talk.

My heart goes out to all of you. Compared to what you have been through I feel very lucky so far. My mouth and the "other" lesions have mostly healed for now on the Prednisone. Every time I try to wean down, they begin to act up again. The surgeries on my back were a nigh are and the pain only got worse afterward. I was told that the Prednisone would help the back pain but it doesn't. I have been on Fentanyl patches and Oxycodone for about 10 years now. I am 48 and just want to enjoy my life. My husband and I have been together for 20+ years. Our youngest joust graduated from High school and has moved out to be closer the school. After raising three kids, (we have one granddaughter and another on the way in Oct.) this was supposed to be "our time". I am actually very lucky. He's the best, we are still like a couple of kids in love and he is very supportive and understanding. It is really good to know there are others out there to talk to who know what it's like to have so much going on. I have had and still do have terrible headaches often. The worst I part is just feeling unwell all the time. Constantly exhausted. I used to be the kind of person who would get up in the morning and just keep going until it was bed time. I wish I had the crochet skills. I restore antique teddy bears. I also collect miniature antique dolls. I would love to know how to crochet clothes for them...LOL thanks for the responses. I may take you up on your offer and contact you on a particularly bad day....

Oral lesions...help

After the worst flare up,of oral,lesions ever (I could not eat anything other than milkshakes and scrambled eggs for a week. The pain was unbearable), I was put on 40mg Prednisone. I was thrilled when within 24 hours the lesions began to heal. Within 48 hours I was eating food. Today was my 9th day on Prednisone and my mouth is flaring up again. It started with a tingle and a few teeny tiny almost invisible blisters on my lip and now, I can feel it spreading into my mouth and getting worse by the second. I spoke with the PA I saw who said to continue the 40mg and topical Clobetasol and she would confer with the doctor and get back to me but I am in a panic. After flare ups and remissions for over two years and several different misdiagnosis of Herpes which I never had, the fact that I have an Autoimmune disease that explains not only the lesions but my chronic pain, lethargy, headaches etched is very new and very scary...

If you need to you can mix liquid benedryl and maloox to coat the ulcers and numb them so you can get a break from them.Oh you east egg it too? You could hide your own easter eggs and not be able to find them. Yeah we know how you feel. Hopefully they find meds to control it better for you! I started on 180mg of prednisone and tapered to finally get some relief.I hope you get some relief sometime soon!

Hi there. I hope you are getting better. If your oral ulcers are still acting up, or if/when they flare up again, I may have an idea of something you could try. I apologize if you have tried this and it has not helped. Unfortunately it is prescription but I'm not sure if it would be easy or difficult for you to get, but it doesn't hurt to try. It is called Chlorhexidine 0.12% Oral Rinse. I actually got it for pain and healing after I got all four of my wisdom teeth out, however it also healed my oral ulcers (I started having a flare up because I was tapering off prednisone once again). It's got a strong taste, doesn't sting too bad, and you should not swallow it. Somehow (after pastes, lidocaine, and other things didn't work) this is the only the besides high does prednisone that has worked for me! If you do get to try it and it works, let us know! I wish you the best!