I have been gone from here for a long while but wanted to stop in to say what they found me to have so you might want to look into it too if you are having the same things with troubles.
I was "finally" diagnosed by my new rheummy doc as having Behcet's Disease.
I had all the symptoms and was called a "liar" in another forum cuz my symptoms didn't match Rheumatoid completely.
Anyway, all the problems i have with toxic things like formadahyde (spelled wrong i am sure) and all my soars, problems with allergies etc. are all part of this.
I have an extremely serious case which is horrible as it can cause heart attacks, strokes etc. and affects my brain as well.
Anway, if you have these symptoms, it might be something to ask your doctor about.
Here is the official thing that tells of most common symptoms, they don't list them all for some reason, but here are most of them:
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=26054 8
I hope this helps. I would have posted it in the other forum i was from but the people in charge banned me cuz they are friends with those who thought my symptoms and life was a lie. Maybe if any of you are from there you can tell others to look for this rare disease as well if they have trouble getting the proper diagnosis.
God bless and i wish you well.
Oh my gosh Shanbr!
I just saw a show on Discovery channel about it..I think it's called mystery diagnosis. Anyway, it looks to be a hard disease to diagnose. I'm sorry you've been through so much. What board kicked you off?
Well, at least you know what it is now. And from what I remember from the tv show - it does run it's course...many years ....but it does eventually slow down.
I wish you the best.
I suck at reading websites that aren't all fisher-priced up. I have no idea what that disease is about. I swear I tried to!
It sounds like alot of skin and eye problems.
Canker and gential sores....
What a bummer
Hul
Yeah Katie
Its' another auto-immune disease - but instead of attacking the joints (like in RA) it actually attacks the bloos vessels. Causing vasculitis, all the "itis's" of the eyes, joint problems, skin problems and digestive problems.
The canker type sores are an outward problem/symptom of the disease...
OOoooooooo thank you. That helps. That's really scary :( I hope you get better shanbr! *hugs*
!!
Shanbr~
I recognize your name; but I'm, not sure from where. If I was involved in any forum that treated you unkind I am sorry....and beg you to keep in mind that often these boards are visited by hundreds of people but a select few are responsible for certain actions.
I hope you'll feel at home here because surely you suffer many of the same problems we all here do.
Is there a cure from this? Or is it simular to RA where as you can control it.....but not yet cure it?
Do you finally feel a relief at putting a proper name on your problem?
Wow Shanbr u must be really relieved to finally have a diagnosis. How long did it take to get your diagnosis and HOW did they finally figure out that this is what you have????? Are you like on lots of meds for this or? What meds do you take? How long have you been sick? Sorry know lots of ?'s but trying to figure out what I got going on too.
Carla
Thanks all.
It is extremely nice to finally find it out, but it is horrible to know how bad of a case I have. I will put some symptoms here for easier understanding for those who need:
This disease is of inflammation of the vains etc.
Most....... Most people get soars in mouth, on private areas like herpies but not, inflammation of the eyes with bloodshot eyes, see black floaty spots etc.
At Least Half....... get inflammation of the entire body. It isn't the same as RA because the actual vains etc. are inflammed so your joints get bad, your muscles get bad, eye balls, brain gets inflamed, sinuses get inflamed etc.
It is most known for being of asian or middle east decent, but some lines from England, african and native american have had them in it. I am caucasion, but my ansestry has both native american and african so who knows where it might have actually come from.
Some people just get some headaches and it comes and goes. Others like me get horribly bed ridden during bad flair times.
It can cause (spelling is wrong i am sure) annurisms... swelling of the blood that causes large lumps that can run through your body and cause strokes or kill you. It is believed that i had a mini stroke last December which is why my train of thought isn't as strong as it once was.
All in all, it is still treated with drugs like RA is and is believed to be caused by not only inflammation, but toxic stuff like stuff in exhaust from cars, bug spray etc.
To help get better if you have this, it is suggested to do the following:
1. eat as organic as you can. No additives as they have bad stuff.
2. Cut out sulfer products. Anything that contains sulfer from not breathing in car exhaust, to not eating addives cuz yep, they are in the food. Also suggests not to eat certain foods like onions etc. you can find sulfer foods online in the search engine for more information.
Basicly, this didn't become as popular until after WWII when foods started getting processed, farms started using poisons in their dirt etc.
Sorry this was so long, but if you get any symptoms (which i know some from the other forum did) it would be important to get it checked.
God bless.
PS
This is a hereditary one. But your members of the family might have something related instead like chrones disease, fibro etc.
soooooo, tell me what tests they did to make this diagnosis?So in your other post you say u are allergic to MTX and doc wants to start u on arava? Does this mean they are still treating u for ra? CUZ I thought bechet's didn't get treated with ra meds but maybe I am wrong. How did they find out it was bechet's? Curious did u have a pos rhum factor? Will bechet's cause that too? Wow if I were u I would want to find everything out about this stuff. How did they figure out u maybe had a stroke so long ago? Is the bechet thing making u sick from allergies too? Sorry for so many questions again.
Hope u are feeling good today
Carla
[QUOTE=shanbr]I have been gone from here for a long while but wanted to stop in to say what they found me to have so you might want to look into it too if you are having the same things with troubles.
I was "finally" diagnosed by my new rheummy doc as having Behcet's Disease.
I had all the symptoms and was called a "liar" in another forum cuz my symptoms didn't match Rheumatoid completely.
Anyway, all the problems i have with toxic things like formadahyde (spelled wrong i am sure) and all my soars, problems with allergies etc. are all part of this.
I have an extremely serious case which is horrible as it can cause heart attacks, strokes etc. and affects my brain as well.
Anway, if you have these symptoms, it might be something to ask your doctor about.
Here is the official thing that tells of most common symptoms, they don't list them all for some reason, but here are most of them:
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=26054 8
I hope this helps. I would have posted it in the other forum i was from but the people in charge banned me cuz they are friends with those who thought my symptoms and life was a lie. Maybe if any of you are from there you can tell others to look for this rare disease as well if they have trouble getting the proper diagnosis.
God bless and i wish you well.
[/QUOTE]Hi Shanbr,
I have read quite a bit about this disease because I have Uveitis. Do You have Uveitis as well??
It's very frustrating to have something wrong and to have people not believing You including DR's. I would love to here for You please PM me for I would like to ask You a few questions. I have a few different autoimmune diseases that are not related to one another and I'm testing high pos for RA.
I had an incident recently that could be related to vasculitis.
Hope to hear from You
Kat
Yup, I know hows u feel about finally be dx.
I have a daughter, bless her heart, that has a lifetime of mystery illnesses that nobody can figure out or could be dx.
It became so difficult on our family that they had to distance themselves from her as most always thought she just wanted attention.
She smoked pot from the age of 6yr to 20 yrs old and did who knows what else along the way. She tells everyone family members made her go these things. She never wanted to go to school and said she was always sick. Mama said she would outgrow these things. She went through her gothic phase and wore black and cut her hair in a mohawk. She said she was aneroxic but never weighed below 145lbs. The she gained 100lbs in 22 days. The family did everything they could. She too said she had the worst case ever of RA and had it all her life but the dr's said she did not have RA. Then she said her fingers were all wavy and her bones were dissolving and she had the worst case of OA but the dr's said there was no damage on her x-rays and she did not have OA. Some dr's told us to get her professional help but she refuses, she said she can treat herself. Now she said she is slowly dying and is allergic to everything but chips and salsa give her relif for hours.
Maybe she should see your dr coz god knows she needs help.
May I ask who your dr is and how he dx you as we are at our wits end.
Hul
PS She has never mentioned sores or skin problems.
Aboutwell
This story sounds a bit far fetched but I've been wrong before. If Your Daughter was smoking pot at 6 , WHERE WERE YOU?
What?
Did I miss something?
Smoking pot at 6 years old? I"ll have to admit that sounds strange to me. A six year old can easily be controlled. Where on earth would a 6 year old get pot? Or even know what to do with it for that matter?
Maybe I am missing something.
I have had the first set of results come back, but still waiting on the other blood tests that check for other inflammation disorders as well.
I get the skin prick test next, but they haven't scheduled it as of yet. I think she will schedule that when the final tests come in.
She is also checking into chrones as my grandmother has it, but no info on that as of yet.
My b/f has severe crohn's, I can help you with that shanbr, feel free to IM me :) I could be wrong here but I think most of the posts on this thread are from one and the same person. You just keep adding new names and new stories to this forum. There are not that many NEW people with RA coming to a forum in a single day. Then You have other names that You have used on here for a while to answer these fake new names. It's quite scary really and You do need professional help
I've been watching this thread pretty close myself because I was waiting for someone....anyone to comment on a 6 year old child smoking pot.
Are Kat and I the only ones that think there's something very wrong with that?
I have to agree with you Kat. Something here's a little fishy.
You've never lived in the city then. Unfortunately it's something that happens quite often. It's very sad and usually with families that have drug problems from broken homes, abused members etc.Let me clarify what I mean by my last post.
Those over the age of 35 usually don't understand what today's young adults have gone through.
With growing up in the 70s and 80s, drugs were very dominate in families and especially those with broken homes. It isn't far fetched at all to see these things happen on a daily basis.
It's one of those things that you have to live it to know it.
Well maybe you're right. I'm exactly 35 so maybe I don't know what goes on it the "City".
No doubt it's a result of horrible situations as you've mentioned. It's very sad indeed.
Shanbr: My heart goes out to you in your struggle with coping with Behcet's Disease!!
I was thinking it was typo for 16? But most of those people no longer post, right? Maybe something was up, back then. Good info otherwise, though.
Crap!