allieinwonder
Moderator
Hey everyone.....
I hope you are all doing well! I'm so sorry I haven't been around much lately, my illness has been at its worst the past three months (I got a full time job that has not been the best decision).
I want to share some good news with you all! MY DISEASE NOW HAS A NAME!!! I am diagnosed, 100%, letter and all! After 8 long years of symtoms, life interruptions, tests, and lots of heartbreak, I have finally been diagnosed after a week long stay at a German hospital. I have behcets disease!
For those of you who don't know my story, let me start at the beginning. I started getting sick at 15, so 8 years ago. For the first few years my illness brought on mouth ulcers, extreme abdomen pain that would only last a few minutes at a time, and digestive issues like constipation and D. When I went to a doctor about it, I was referred to a GI who diagnosed me with IBS without even touching me, sending me on my way with some IBS medication. I decided to just live with it and enjoy life regardless.
As years went on, the IBS got worse, as well as the ulcers and other symptoms. There would be times in college where I would be stuck in the public bathroom almost all day because of the D. I ignored it though and kept moving day by day.
4 years into the illness, June 2010, I decided to drive overnight to my husbands apartment 6 hours away for the weekend. When I woke up the next day after my drive. I was in so much pain it was insane. The room was spinning, and the pain was too overwhelming to ignore. I ended up in a urgent care facility who said it is probably nothing and gave me some anti nausea and I was sent on my way. I ended up in the ER twice in the next week because of the pain as well. The first ER found nothing wrong and sent me home, and the second diagnosed me with a hernia after poking around my abdomen. I had surgery for the hernia later that month, but they did not find a hernia and the pain never went away.
The next couple months I learned to live with the pain since no doctor could find anything, the pain came and went, but never truly went completely away. At that point I was having D upwards of ten times a day. I thought I must have crohns instead of IBS, and went back to my GI from a few years back. They agreed and suggested a upper endoscopy and colonoscopy to confirm. Both tests came back normal, which was devastating, and I was again flagged with IBS. When I went to get a second opinion, I spent almost a year doing tests for crohns to try and prove it was IBS... Small bowel follow through, pill cam, blood and urine tests galore. My GI knew something was up because of my severe mouth ulcers, fatigue, and other symptoms, but we could figure out why I was having so many issues when EVERY test came back normal. Even when I was hospitalized in April of 2011 all tests came back fine for GI issues.
After my pill cam came back normal in August of 2011, I decided to take a different route and consult with a rheumatologist. If it wasn't crohn's, it had to be something. At that point my symptoms list had grown out of control...joint pain, digestive issues, severe abdominal pain, weakness/fatigue, mouth ulcers, etc. my Rheumy suggested lupus as the culprit (attacking my intestines like crohn's) and did blood tests. My ANA came back positive, suggesting an autoimmune disease, and when I was put on a prednisone trial I got much better. At that point my Rheumy loosely diagnosed me with mixed connective tissue disease, and put me in plaquenil and prednisone long term for treatment. I finally thought I was getting somewhere.
Unfortunately, in the next few months (June of 2012) I had to switch doctors, and I had to take a step back again. My new Rheumy did new blood tests, in which my ANA was negative, and ended up taking me off my meds and telling me it was nothing in his realm of study. I kept seeing him these past few months, hoping and praying when I see him my ANA would test positive and he would out me back on my meds and give me a diagnosis. Instead, every time I saw him he said there was nothing new to say and that I was fine. Even when I told him I was buying a wheelchair and could not shower he would not do anything for my discomfort. I had also started seeing a pain management specialist who said my abdominal pain was just some nerves firing off incorrectly, despite the swelling and heat coming off the spot. All three doctors including my GP could not find an answer so I was ignored when I pleaded for help.
And now we are at present time. As of now my symptoms list is pages long. Some of them are: chronic abdominal pain, intermittent chest pain, joint pain in the wrists and knees, very bad D, multiple ulcers in the mouth and genitals that last over a month and make it where I can't talk/eat, chronic fatigue, left kidney pain, dizziness/blurred vision, cold hands and feet (raynauds phenomenon), and rashes on my face and legs. As the list has gotten longer over the years, every single doctor would right off every symptom as something minor, and they would never look at the bigger picture. If I fought them, I was treated as a drug seller or a hypochondriac, or they would simply ignore me.
This past week, my whole situation was flipped upside down. A week and a half ago I began to have severe chest pains that felt like I was being squeezed together with a corset. I didn't think anything of them at first, but after 24 hours of them I could not function. I waited the weekend out in my own home on muscle relaxers (only thing that helped), and went to my GP last Monday. He took a look at me, saw my EKG was abnormal and my heart rate was through the roof, and I was sent to the hospital. I was then admitted for a possible heart attack, and was in the hospital for 5 days going through tests on my heart and lungs. While I was there, I made sure my doctor knew my chronic illness symptoms and that I was undiagnosed to make sure if these pains were related that they could help that way and maybe even get me a diagnosis. The entire time I was in the hospital, all of my heart/lung tests were coming back normal, like every test does for me, and I was told they thought I just have the flu and I would be going home soon. I was devastated that I was being written off yet another time.
When my doctor came in to see my last Friday, he had great news for me. They had figured out what disease I have! The doctor who had been put on my case was a heart specialist, but he looked through my entire medical records (which is a book basically), and he told me he knew something was very wrong and he really wanted to figure it out for me. He assembled a team of specialists from around the hospital to look at my records and current symptoms. The Rheumy who was pulled in figured out that I have behcets disease as all my symptoms fit, and it explained my chest pains perfectly.
Behcets is a disease that is VERY rare. Most doctors in the united states probably don't know this disease even exists. It mimics three other autoimmune diseases: Lupus, Crohns, and RA, yet when tested you will not find proof of disease. Behcets causes these autoimmune symptoms because it is your immune system attack the blood vessels in your body, not the actual organs themselves. It can attack any part of the body since we have blood vessels everywhere. The classic first signs of behcets is oral ulcers, and you have to have three ulcers or more in a year to get diagnosed with behcets. Other common places behcets attacks is your brain, eyes, and intestines, and skin. Behcets can even cause the same ulcers in your intestines like crohns, or it could just inflame the outer portion, causing crohn's like symptoms but it will not show up on tests. Actually there are no actual tests for behcets...it is diagnosed based on symptoms and ruling out the three diseases mentioned above.
Why am I telling you all of this and making you read so much? Because if you have behcets too, I don't want you to suffer anymore and be undiagnosed any longer than you have to. I don't want you to have to keep begging for answers when they aren't coming. I want yours to be caught early to minimize the damage it can do.
As for me currently, I am now looking at a long journey of healing. After 8 years of being undiagnosed, ignored, and untreated, I now have a lot of damage to try and repair. Behcets has done damage to my eyes, intestines, skin, heart, joints, and lungs. Right now the blood vessels near my heart are inflamed, causing an angina, or a condition where the heart isn't getting enough blood. My doctors are afraid I might have a heart attack if the swelling doesn't get better quick enough. I start my treatment plan tomorrow, which they said would be prednisone. If that doesn't work, they also use remicade, methotrexate, and drugs used to treat AIDS to treat it. I'm really hoping for my chronic abdominal pain goes down with treatment as well, as I am tired of taking pain meds all the time.
So, if your story sounds similar to mine, and you have tested negative for crohns, I would highly recommend bringing this disease up to your doctor. Yes, it is rare, but it would be better to rule it out then not know what's wrong with you for years to come.
Also, for all of you still searching for answers.....NEVER GIVE UP HOPE! I know it can be so heartbreaking, but at some point they have got to figure out why you are sick. If you are stuck with doctors who are pushing you away and not trying to figure it out, CHANGE DOCTORS. If I hadn't ended up at the German hospital, away from my regular Rheumy, I would have been ignored for far longer. If you get stuck with one doctor and they don't keep moving towards helping you, fire them and get a fresh set of eyes on your case. Even with the rarest of diseases, there has got to be a doctor out there who knows it and can recognize that you have it. You have to be proactive when the answers to your health issues aren't obvious!!
I hope you are all having a good weekend. If you got through all that, I applaud you.
I hope to feel much better very soon so that I can be in here more often! Remember, us spoonies have to stick together!
Some more info on behcets:
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521
http://en.wikipedia.org/wiki/Behçet's_disease
I hope you are all doing well! I'm so sorry I haven't been around much lately, my illness has been at its worst the past three months (I got a full time job that has not been the best decision).
I want to share some good news with you all! MY DISEASE NOW HAS A NAME!!! I am diagnosed, 100%, letter and all! After 8 long years of symtoms, life interruptions, tests, and lots of heartbreak, I have finally been diagnosed after a week long stay at a German hospital. I have behcets disease!
For those of you who don't know my story, let me start at the beginning. I started getting sick at 15, so 8 years ago. For the first few years my illness brought on mouth ulcers, extreme abdomen pain that would only last a few minutes at a time, and digestive issues like constipation and D. When I went to a doctor about it, I was referred to a GI who diagnosed me with IBS without even touching me, sending me on my way with some IBS medication. I decided to just live with it and enjoy life regardless.
As years went on, the IBS got worse, as well as the ulcers and other symptoms. There would be times in college where I would be stuck in the public bathroom almost all day because of the D. I ignored it though and kept moving day by day.
4 years into the illness, June 2010, I decided to drive overnight to my husbands apartment 6 hours away for the weekend. When I woke up the next day after my drive. I was in so much pain it was insane. The room was spinning, and the pain was too overwhelming to ignore. I ended up in a urgent care facility who said it is probably nothing and gave me some anti nausea and I was sent on my way. I ended up in the ER twice in the next week because of the pain as well. The first ER found nothing wrong and sent me home, and the second diagnosed me with a hernia after poking around my abdomen. I had surgery for the hernia later that month, but they did not find a hernia and the pain never went away.
The next couple months I learned to live with the pain since no doctor could find anything, the pain came and went, but never truly went completely away. At that point I was having D upwards of ten times a day. I thought I must have crohns instead of IBS, and went back to my GI from a few years back. They agreed and suggested a upper endoscopy and colonoscopy to confirm. Both tests came back normal, which was devastating, and I was again flagged with IBS. When I went to get a second opinion, I spent almost a year doing tests for crohns to try and prove it was IBS... Small bowel follow through, pill cam, blood and urine tests galore. My GI knew something was up because of my severe mouth ulcers, fatigue, and other symptoms, but we could figure out why I was having so many issues when EVERY test came back normal. Even when I was hospitalized in April of 2011 all tests came back fine for GI issues.
After my pill cam came back normal in August of 2011, I decided to take a different route and consult with a rheumatologist. If it wasn't crohn's, it had to be something. At that point my symptoms list had grown out of control...joint pain, digestive issues, severe abdominal pain, weakness/fatigue, mouth ulcers, etc. my Rheumy suggested lupus as the culprit (attacking my intestines like crohn's) and did blood tests. My ANA came back positive, suggesting an autoimmune disease, and when I was put on a prednisone trial I got much better. At that point my Rheumy loosely diagnosed me with mixed connective tissue disease, and put me in plaquenil and prednisone long term for treatment. I finally thought I was getting somewhere.
Unfortunately, in the next few months (June of 2012) I had to switch doctors, and I had to take a step back again. My new Rheumy did new blood tests, in which my ANA was negative, and ended up taking me off my meds and telling me it was nothing in his realm of study. I kept seeing him these past few months, hoping and praying when I see him my ANA would test positive and he would out me back on my meds and give me a diagnosis. Instead, every time I saw him he said there was nothing new to say and that I was fine. Even when I told him I was buying a wheelchair and could not shower he would not do anything for my discomfort. I had also started seeing a pain management specialist who said my abdominal pain was just some nerves firing off incorrectly, despite the swelling and heat coming off the spot. All three doctors including my GP could not find an answer so I was ignored when I pleaded for help.
And now we are at present time. As of now my symptoms list is pages long. Some of them are: chronic abdominal pain, intermittent chest pain, joint pain in the wrists and knees, very bad D, multiple ulcers in the mouth and genitals that last over a month and make it where I can't talk/eat, chronic fatigue, left kidney pain, dizziness/blurred vision, cold hands and feet (raynauds phenomenon), and rashes on my face and legs. As the list has gotten longer over the years, every single doctor would right off every symptom as something minor, and they would never look at the bigger picture. If I fought them, I was treated as a drug seller or a hypochondriac, or they would simply ignore me.
This past week, my whole situation was flipped upside down. A week and a half ago I began to have severe chest pains that felt like I was being squeezed together with a corset. I didn't think anything of them at first, but after 24 hours of them I could not function. I waited the weekend out in my own home on muscle relaxers (only thing that helped), and went to my GP last Monday. He took a look at me, saw my EKG was abnormal and my heart rate was through the roof, and I was sent to the hospital. I was then admitted for a possible heart attack, and was in the hospital for 5 days going through tests on my heart and lungs. While I was there, I made sure my doctor knew my chronic illness symptoms and that I was undiagnosed to make sure if these pains were related that they could help that way and maybe even get me a diagnosis. The entire time I was in the hospital, all of my heart/lung tests were coming back normal, like every test does for me, and I was told they thought I just have the flu and I would be going home soon. I was devastated that I was being written off yet another time.
When my doctor came in to see my last Friday, he had great news for me. They had figured out what disease I have! The doctor who had been put on my case was a heart specialist, but he looked through my entire medical records (which is a book basically), and he told me he knew something was very wrong and he really wanted to figure it out for me. He assembled a team of specialists from around the hospital to look at my records and current symptoms. The Rheumy who was pulled in figured out that I have behcets disease as all my symptoms fit, and it explained my chest pains perfectly.
Behcets is a disease that is VERY rare. Most doctors in the united states probably don't know this disease even exists. It mimics three other autoimmune diseases: Lupus, Crohns, and RA, yet when tested you will not find proof of disease. Behcets causes these autoimmune symptoms because it is your immune system attack the blood vessels in your body, not the actual organs themselves. It can attack any part of the body since we have blood vessels everywhere. The classic first signs of behcets is oral ulcers, and you have to have three ulcers or more in a year to get diagnosed with behcets. Other common places behcets attacks is your brain, eyes, and intestines, and skin. Behcets can even cause the same ulcers in your intestines like crohns, or it could just inflame the outer portion, causing crohn's like symptoms but it will not show up on tests. Actually there are no actual tests for behcets...it is diagnosed based on symptoms and ruling out the three diseases mentioned above.
Why am I telling you all of this and making you read so much? Because if you have behcets too, I don't want you to suffer anymore and be undiagnosed any longer than you have to. I don't want you to have to keep begging for answers when they aren't coming. I want yours to be caught early to minimize the damage it can do.
As for me currently, I am now looking at a long journey of healing. After 8 years of being undiagnosed, ignored, and untreated, I now have a lot of damage to try and repair. Behcets has done damage to my eyes, intestines, skin, heart, joints, and lungs. Right now the blood vessels near my heart are inflamed, causing an angina, or a condition where the heart isn't getting enough blood. My doctors are afraid I might have a heart attack if the swelling doesn't get better quick enough. I start my treatment plan tomorrow, which they said would be prednisone. If that doesn't work, they also use remicade, methotrexate, and drugs used to treat AIDS to treat it. I'm really hoping for my chronic abdominal pain goes down with treatment as well, as I am tired of taking pain meds all the time.
So, if your story sounds similar to mine, and you have tested negative for crohns, I would highly recommend bringing this disease up to your doctor. Yes, it is rare, but it would be better to rule it out then not know what's wrong with you for years to come.
Also, for all of you still searching for answers.....NEVER GIVE UP HOPE! I know it can be so heartbreaking, but at some point they have got to figure out why you are sick. If you are stuck with doctors who are pushing you away and not trying to figure it out, CHANGE DOCTORS. If I hadn't ended up at the German hospital, away from my regular Rheumy, I would have been ignored for far longer. If you get stuck with one doctor and they don't keep moving towards helping you, fire them and get a fresh set of eyes on your case. Even with the rarest of diseases, there has got to be a doctor out there who knows it and can recognize that you have it. You have to be proactive when the answers to your health issues aren't obvious!!
I hope you are all having a good weekend. If you got through all that, I applaud you.
I hope to feel much better very soon so that I can be in here more often! Remember, us spoonies have to stick together!Some more info on behcets:
http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521
http://en.wikipedia.org/wiki/Behçet's_disease
