Hi I live in Washington and have behcet's

[naturalist]

I have had symptoms since birth and now for 58 yrs this is very advanced I get vertigo strange eye burning that DRS and specialist say there is no reason for this pain today am having groin vein pain apply pressure it eases it but does not go away along with abdomen pain and some breathing distress. I will monitor and go into ER if neaded I try to avoid those places as ER does no good in past for my symptoms I always end up going to reg DR who just this year has been very helpful with treatments he works well with my natural DR Is there any one elsee in Washington who has this most all I read about is out of country

[Hidden]

It is such a rare disease, where in Washington do you live, Washington State right????

[thegoodmom]

I live in Washington state, and I have had Behcet's for 13 years.

[PollySunshine in reply to thegoodmom]

Hi. I'm in Washington too. I am waiting official dx but my health care team is traveling this path of belief that Behcets is finally it. Can we talk?

My email [e-mail]

[thegoodmom]

Where in WA do you live?

[naturalist in reply to thegoodmom]

In Arlington where do you live?

[thegoodmom in reply to naturalist]

I live in Bellingham.

[naturalist in reply to thegoodmom]

what city do you live in how long ha the behcet's been present in your body

[duke22]

going to most drs and especially the er is usually not good because behcets is so complicated that throw their hands up. I dont know anything but breathing problems i would go to the er and not even mention behcets. that sounds serious. the groin area pain i have not heard of but i am just a person but if it is a vein is it blood flow related and not related to behcets. i am in alabama with insurance so it is easier to get somebody do scan with something my groin area and get me at least a chest xray and the eye thing, we have a eye foundation hospital here where that is all they do. do they have a eye hospital in your area. I dont sound real positive and i am sorry and keep going to the dr sucks but that is what i would do if it were me and i am on here cause my 23 year old sick since 12 and if he had any of what you are talking about he would be at the er and the eye foundation. good luck god bless

[naturalist]

This is a vascular disorder so periodicaly I get different vein pains but is all seems to go away with heat and cold packs and aspirin its trial and error though my hands and feet bother me this week best wishes to all who suffer from this

[naturalist]

Oh wow I am in the Marysville Arlington area not far from you at all I believe my mom had this disorder also but was never diagnosed she passed away from heart kidney failure in 08 I am native American german my family originated in pensylvania later coming to new York then Wisconsin where do you originate from wondering if it is our heritage? I am brothertown Mohegan narragansent native American our tribe is not regocgnized again yet (long storie) of ansestors losing land in the early 1900's any chance you are of this tribe or originating from theses areas?

[thegoodmom in reply to naturalist]

No, I am not of that origin. I am half Italian, half Mexican.

No one else in my family has been diagnosed with Behcet's. However, a number of my family members have semi-similar autoimmune related illnesses (M.S., connective tissue disease, etc.). Also, I have a paternal uncle who was diagnosed with retinal vasculìtis and chronic fatigue. I believe if he and I had seen the same doctor, he would likely have been diagnosed with Behcet's, too.

I am happy to correspond with others here in WA. My email is:

[e-mail]

[PollySunshine]

Oh ladies, we are so close in location. Home for me is Mt Vernon, though I spend about half the time in Arlington.

Can you tell me who your provider is for the tx of BD? And would you share any tips I need to be aware of as I seek to figure all this out?

Thank you

[e-mail]

[whyzcrazyman in reply to PollySunshine]

Hi pollysunshine,

My name is greg I live in mt.vernon as well. I have bd since I was young but wasn't diagnosed until 01 or 02 can't remember lol can't remember anything it seems anymore. I've been in remission since 07 and off my mess and just on supplements. That was a big mistake. I'm not that wise just crazy it seems because I thought I'm getting older now and bd is a 20 to 30 something disease and wares off as u age , right? Wrong! It progresses into nbd. My Dr in Arizona never said anything about that. And I'm finding that not to many doctors do. I may have had neuro behcets longer than 01 . Anyhoo would like to talk,not trying to make u feel sorry for me but have knowone, as always start talking disease and everyone scatters like cockroaches when u turn lights on. My email is [e-mail] . Also naturalist and the good mom as well.

Peace g

[PollySunshine in reply to whyzcrazyman]

Thank you. I look forward to hearing more and hopefully being one of your support team members, even if it's just digital.

Who do you see for help now? What are your clues that this has morphed to nbd?

[whyzcrazyman in reply to PollySunshine]

Hi again,

I will be going to Skagit regional clinic. There's a doctor named Wilks there who is recommended for specializing in bd so that's where I start how about u. I just posted a bunch of them so please go and read that. My hand keeps going numb need break. Please tell me yours I'd like to know and is there something about sunshine with mt. Vernon. Lol everybody say it . It's really cool.

[PollySunshine in reply to whyzcrazyman]

Hi. Have you met with Dr Wilks?

[thegoodmom]

Dear Pollysunshine, Greg, Naturalist, and others,

Wow! I am stunned and delighted to learn there are more people with Behcet's so close by! We should all get together "IRL" sometime...have coffee/food somewhere (perhaps the College Way Denny's just off the freeway in Mt. Vernon). I have only met a few other people with Behcet's in person, but it has been such a neat experience every time. Gives me so much more hope and strength to know I am not alone in my experiences!

I have made many friends with people Behcet's through a couple of Facebook groups I belong to. It has helped me so much.

To reply to a few Q'a quickly... (then I have to get back to work...just started working a little again after 10 years of being barely able to work or do much)... I have had Behcet's since at least Fall 2002. I was diagnosed by Dr. Peter Mohai, in Rheumatology at Minor and James in Seattle. I saw Dr.Mohai for 9 years until my insurance would not cover. I see Dr. Kinsella at Bellingham Arthritis and Rheumatology now.

Have to run for now. Stay in touch.

Sincerely!

Lisa Fasano

[PollySunshine in reply to thegoodmom]

How do u like the folks at Bellingham A&R? I have a referral to Dr Kinsela's partner at the end of Jan.

I wasn't impressed with phone call with the front desk. I asked if the Dr had interest or experience working with or diagnosing BD. She scoffed saying she didn't know but would assume so and wanted to know if I wanted to keep my appointment. A month ago there were 17 people on the cancellation contact list. Still 16 last week.

[thegoodmom]

P.S. - I have been diagnosed with NBD, too.