Sorry it's long, but I need help!

So, I have a few questions. I've been sick since I can remember. It started with joint pain and swelling. When I was 12, I was diagnosed with epilepsy. Then right before my 13th birthday, ulcers in my intestines were found as well as horrible canker sores all through my mouth. I was then observed for Crohn's Disease. After a few years, the doctors decided it wasn't Crohn's, just ibs, but the symptoms of the ulcers never faded, they seem to come back every now and then. I was diagnosed with arthritis when I was 17, but it was always thought to be fibromyalgia because there was no obvious destruction other than the immense swelling and crippling pain. My joints would often get extremely red as well, mainly my knees, hands, and feet. As time went on, I kept noticing little red bumps that would itch like crazy! They seemed to appear during a flare of my other symptoms but I always brushed it off as allergies. I also have severe migraines and horrible stiffness in my neck, but I was diagnosed with Dystonia about 5 years ago at age 18, so I chalked it up to that and the epilepsy. After time, I noticed that the red bumps were on my "girl area". I still have bouts of canker sores and intestinal ulcers, also the red bumps seemed to start resembling pimples on my shoulders and thighs and chest area. I always thought maybe it was just razor burn, until the sores started resembling pimples down there as well. I ran straight to the doctor thinking I had herpes. I was scared to death! She said that it didn't look like herpes, and upon testing, it showed that it was not any kind of std. This past week, I've been sicker than usual, and I know I'm having a flare, but the sores seem to be worse than ever, and I have no idea why. I've been extremely stressed lately which can cause my normal health concerns to flare, but then someone mentioned Behcet's to me. I called my doctor, but haven't heard back yet. I itch like crazy, and the ulcers are bad and annoying, and yes, EXTREMELY embarrassing! Could it be Behcet's?? My scalp has had issues with itching before many times, and I found a sore on my actual scalp the other night, didn't think much of it, but I guess that's normal for behcet's?? I'm kind of lost here. I know nothing about this disorder, and all of my health issues match these symptoms. I'm kind of scared. Do the lesions hurt or itch?? Is that normal?? And what exactly do they look like? (Any pictures would help as well, the Internet describes them but it's hard to know without seeing them) How do they heal and how fast do they heal?? What can I use to help them?? My veins in my arms also tend to poke out a lot, and it looks kind of freaky. Idk if that's a part of it?? Every time I get an IV, it also leaves a red raised bump, like the ones on my shoulders, is this normal??.. My eyes are also always dry, some days worse than others. I try to wear my glasses to keep the air out of them, but that doesn't work. They water a lot and are always irritated. Sometimes, they get red and it almost looks like I'm high. Most times, all I want to do is just close them because they're that irritated and eye drops don't seem to help. 

I'm sorry this is so long, but I need help!! Please, any advice is so greatly appreciated! 

Thank you! 

7 Replies

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  • I'm sorry you're having problems. Sounds like Bechets from the research I've read. There is another forum on here that is called "Bachets Syndrome Society" look that one up there are over 2000 members so it gets a lot more responses form people and a lot more questions being asked. You probably need to be referred to a rheumatologist to get more help. Wishing you the best. 

  • Hi anonymous,

    I'm so sorry that you have to go through this- I've had similar symptoms, but I was older, and it only took two years to diagnose me with Behcet's Syndrome (most of the time it takes much longer- I was diagnosed by my local rheumatologist, and then two doctors at the Mayo Clinic). I know it's frightening, and I know it feels lonely, and I know it feels like you're going crazy, that your doctors don't seem to understand how much your symptoms effect your daily life. One thing with Behcet's is that stress is often a trigger, it is for me, and honestly, I'm still terrible at managing it- how can you not be stressed out when you're going through as much as you are!! But it definitely makes everything worse for me- both Behcet's and epilepsy.

    Here aresome things that stand out to me about your story- Behcet's tends to be worse the earlier symptoms begin. Behcet's is a vasculitis that effects all sizes of blood vessels, which means that it can effect the body in more places. The traditional criteria for diagnosis is oral and genital ulcers, uvieitis (inflammation of the eye, as a side note, uvieitis causes really obvious symptoms- now I'm not a physician, but watery eyes don't really fit that diagnosis- which is a really good thing!) Skin lesions are another criteria - Google Behcet's diagnosis criteria, typically the ulcers are enough for the diagnosis.

    Ok, so I'll do my best to answer your question based on my ownexperiences- again, I am not a physician. Yes, you have some symptoms of Behcet's, and I would bet lunch money that you have some kind of autoimmune disease. My skin ulcers never really itch until they start to heal, so it's possible that they could be ulclers, but they th itching makes me wonder if it's some sort of dermititis- I'm not down playing you'd symp, but this is one direction you might begin with. Unfortunately, there is no test for BS, it's diagnosed clinically, which means you and your physician eliminate all other possibilities and consider your symptoms (which in your case I find severe). My skin lesions appear like pimples, that don't itch, and open slightly- just like a canker sore on your skin. All my ulcers tend to take on average two to three weeks to heal, and leave scaring where the ulcer was- in my mouth, on my skin, or vagina. When I don't have anything to treat them with me, I use over the counter canker sore treatment, both for the oral and vaginal ulcers. As far as the skin ulcers, avoid touching them, and use Neospone and cover it to prevent infection. All ulcers are painful, which is a trademark of BS. 

    These are the steps I recommend- this is difficult, but you're going to have to be YOUR own advocate. This means asking your doctors tough questions. It means getting referrals to specialists. My team includes my Rheumatologist, neurologist, dermatologist, allergist/pulminologist, pain management, physical therapist, my family doctor, and Im probably forgetting someone. Have one doctor's be the ring-leader, my Rheumatologist is mine. They will be in charge of collecting the notes from all the other doctors- it's absolutely vital that everyone shares information. This isn't going to be easy, but you're going to have to doctor hop. If you don't feel comfortable with one doctor, get a second opinion. Finally, you may want to start at the beginning. University hospitals and clinics are a good place to start. Gather all of your medical records, which probably resembles the entire collection of encyclopedias, and bring them to the office before your first appointment. At the time of your appointment, make an accurate !ed list- down to any supplements. Also, before the appointment, make a timeline of when you're symptoms start, the name of the specialists you saw, the diagnosis, and drugs prescribed and their effectiveness. This is like the cliff notes version of your medical records. It's also helpful when they start asking you about your medical history.

    Finally, tell your doctor your thoughts on the diagnosis. Remember- they work for you. 

    I really hope this helped. If you'd like to contact me, check out my Facebook page- Behcet's Blog. I wish you the BEST of luck, and that you find some relief for your symptoms.

    Peace- Nikki

  • Thank you so much! I have multiple autoimmune disorders. It started with ulcers in my intestines and epilepsy, then I got my arthritis diagnosis. Last but not least, I got the Dystonia diagnosis. I've been sick for 11 years. I just don't know if these symptoms could be a result of my already existing conditions, or possibly Behcet's. I've always had the little red pimple looking dots on my shoulders, elbows, thigh, and genitals, and mouth ulcers but didn't think much of it until I got a huge breakout and freaked out because I thought it was herpes. The doctor told me to put this Triacimanol (spelling may be wrong) cream in it and if it helps, it's definitely not herpes. I tried it and the genital sores have stopped burning so much and the swelling and redness has gone down. They're finally healing! I can wear my normal jeans again! My doctor says Behcet's, and all the symptoms are there, but I just don't know if it could be something else. 

  • Hi,

    I know how you feel- I've only been sick for seven years, but it's so frustrating. First I got the Behcet's diagnosis, then the seizures started. At this point, I've just accepted that with most of these disorders, Behcet's included, treatment is just putting out fires- treating the symptoms, because there are few options to treat the disease. Good news- many autoimmune disorders treat the underlying condition similarly, with immunosuppressives (Imuran, Methotrexate, cyclosporine, TNFs (enbrel humera, remicade) and others. I wish there was a magic pill, like there is for other illnesses, but I'm hopeful someday we can throw away some of those drugs. All I can say is to see different doctors, get more opinions, and find the treatment option that you feel comfortable with. 

    Triamcimilone (spe!) Helped my skin too. Lidocaine helps with the vaginal ulcers, and there's a great product called Magic Moutnwash- if your doctors don't know of it, ask your compounding pharmacy if they are and to contact your doc. Or call up your dentist, they might be more familiar.

    DON'T stop going to your doctors if you have a strange symptom. Remember, you're not a hypochondriac, you have a wierd disease that little is known about!

    Must curious, what kind of seizures do you have? Do they increase when your symptoms flair? 

    Hope this helps- keep fighting

    Nikki

  • Thank you! That helps a lot! My ulcers started to heal and I thought I was over this bout, but it flared back up again and this morning I woke up, and my eye is super inflamed. It looks like pink eye. I'm back to sweatpants for a bit too.... 

    My seizures are pretty well controlled actually. I have grand mal seizures, but I take Keppra and I've been seizure free for about 2 years now. What type do you have?? 

  • I also now have epilepsy after having a stroke 4 years ago from the vascularises and 3 heart attacks this year which they can't fix due to being on so many steroids for so many years it's wrecked my veins so they can't operate so I'm looking for a cure unfortunately I have a really bad case

  • I'm so glad I could help- I'd definitely get that eye checked out! There's nothing wrong with sweats- pretty much my wardrobe of choice! I have Temporal Lobe epilepsy, with complex partial and grand mal- I've never been completely seizure-free in four years, and I've tried just about every drug on the market. I recently found out my insurance stopped covering Vimpat, and I had to quit cold turkey- I had seizures most of the night! Ahh well, do what you can right?