I saw my Rheumatologist this afternoon and all of my bloodwork for Lupus came out fine. Plus, I do not have any evidence of Arthritis, except possibly in my shoulders and in my spine; an Ultrasound Scan showed no evidence of Arthritis in my wrists. However, I do suffer from extremely bad Arthralgia. :? Now, he thinks that I may not have Systemic Lupus after all, but that I may actually have Behcet's Syndrome instead? However, he confirms that I definitely have Fibromyalgia, Sjogren's Syndrome (which my mother also has), Raynaud's Phenomenon and Sub-Cutaneous Lupus (confirmed by Dermatologist).
Does anyone know anything about Behcet's Syndrome? I had never really heard about it before, so I did a bit of research on the Internet. Any information would be most appreciated!
Thanks and keep well!
Behcet's is extremely rare in the United States, although it is slightly more common in people of Mediterranean or Asian origin. I've only known one person with a diagnosed case of Behcets - an african-american male in his late twenties who goes to the same rheumatologist I do. His primary care doctor originally suspected lupus because he had recurring oral and genital lesions and arthralgias, but his ANA test was negative. When he developed uveitis, that pretty much clinched the diagnosis of Behcets. In the US, Behcets primarily affects people in their 20s and 30s, but the onset may be different in hotter climates. If your doctor does suspect Behcets, then you need to have a thorough eye examination right away to rule out any eye involvement. Behcets can cause permanent vision loss, so this is something you want to stay on top of. Inflammation in the back of the eye may not cause any obvious symptoms, so it's important to have a dilated eye exam by a medical doctor specializing in eye diseases, not just an optometrist. Behcets can also cause mouth ulcers, genital ulcers, skin lesions, lung inflammation, gastrointestinal problems, and arthralgias, but the most serious potential complicatioins are CNS involvement and aseptic meningitis. Since Behcets is also an autoimmune disorder, treatment focuses on relieving symptoms and suppressing the immune system. So many of the meds are the same used for lupus - steroids, imuran, and so on.
Thanks once again for your thorough, helpful and very detailed information!
This is the problem with me too... I have ulcers everywhere, which are really bad and which are definitely caused by an auto-immune response (the Dentist confirmed this because he prescribed something specifically to treat them, which worked - it doesn't work for viral ulcers, as it makes them a thousand times worse! - and because I had other problems going on inside of my mouth, which he said are typical of an auto-immune disease), but my A.N.A. Test was negative both of the times that it has been tested! :? I also have Erythema Nodosum from below my knees down to my ankles and my Photophobia has got much worse recently... My Rheumatologist is really worried about the ulcers though...
However, if my Lupus is only Sub-Cutaneous and not Systemic, then where does the Raynaud's Phenomenon come from and why do I get SO EXTREMELY ill every single time my malar rash appears? It's just too much of a coincidence for me to be sick every single time that the rash appears on my face! Especially considering the fact that I usually have some type of kidney problem and an enormous plethora of ulcers when the rash appears! :? However, apparently Behcet's can also attack the kidneys, but then where does the rash come in? :? Plus, what about the seizures? Can Behcet's cause seizures? :?:
However, my bowel and lung problems definitely seem to fit in with Behcet's? :?
I am just SO confused! Aches, pains, Costochondritis, extreme fatigue, I.B.S., Overactive Bladder Syndrome and sleeping problems I can easily put down to my Fibromyalgia, so there's no problem there. My Malar Rash can be put down to the Sub-Cutaneous Lupus, but what about all of the other things? If my ulcers are due to the Behcet's, then where on Earth are the Raynaud's Phenomenon and the Epilepsy coming from? The M.R.I. of my brain was completely normal (yay! ), but my E.E.G. was very diffuse and I've had seizures coming from three of the lobes in my brain - my Temporal Lobe, my Frontal Lobe and my Parietal Lobe, which is apparently indicative of auto-immune/virus-caused Epilepsy. :?
It's definitely the Raynaud's that worries me the most, though. If I don't have S.L.E., then why should I have Raynaud's? I'm also the most allergic person that my doctors have ever met, so I thought that this was due to the Lupus? However, it can be due to the Celiac Disease too. :?:
This is ridiculous! :shock: Forgive me, I sound like I want to have S.L.E., which believe me, God knows that I don't! It's just that I can't believe that I went through so much "rubbish" (sorry!) to get a diagnosis, which is now probably incorrect, so now I'm back to square one again and I'll have to go through all of that "It's all in your head!"; "Hypochondriac!"; "Munchausen Syndrome!" nonsense AGAIN! :cry: I'm sorry, but I just don't think that I can go through all of that again. I don't want to have to cry myself to sleep EVER again because doctors don't believe me and don't want to listen to me! :cry: It shook every fibre of my being the last time and I REFUSE to go through that again! It's just SO hard to know that you're really ill, but no-one will believe you because either "You look so well!" or they just can't find the problem and refuse to admit that they actually "don't know!" I'm just SO grateful that my mother and I are so close and that I have such a wonderfully supportive mother who always believes in me, as well as fantastic friends who care about me! I'm especially grateful to all of you on this Forum, without whom, I don't think that I would ever have managed! :cry: So, THANK YOU, EVERYONE!
Keep well! I'm sorry that this is so long, but I needed to vent!
Sweetie, reading over what you've written, I can understand why your doctors suspect Behcets - the ulcers are consistent, and Erythema Nodosum is definitely associated with Behcets - it occurs sometimes with lupus, but is more common with Behcet's. And Behcets can cause a lot of GI problems, which can be mistaken for IBS or for Crohns disease.
A diagnosis of subacute cutaneous lupus means that you don't have SLE, but it DOESN'T mean that you don't have systemic symptoms. Fever, muscle aches, arthralgias, arthritis and malaise (generally feeling unwell) are just as common with SCLE as they are with systemic lupus. And people with SCLE are usually VERY photosensitive, even more so than people with SLE. So you can have "flares" of SCLE that feel pretty much like SLE, and you will probably have the malar rash when the illness is flaring. Sub-acute doesn't mean that only the skin is involved, so it's probably to blame for the periods of illness associated with the malar rash. As for Reynauds, it can occur by itself, or in association with any autoimmune disease, including Sjogrens, Behcets, RA, or any form of lupus. So yours could be something primary (meaning it's a separate disease) or it could be secondary to the Behcets or the Sjogrens. Behcets can cause inflammatory problems in the kidneys similar to those in the GI tract. It can also cause central nervous system involvement and sometimes presents with seizures. But it's also possible that your seizures are related to a birth injury, which can cause multi-focal seizures. So the seizures might be a completely separate thing, unrelated to your auto-immune problems. They could also be related to celiac disease - some malabsorption syndromes can trigger metabolic seizures.
I'm sorry you had to go through such grief with the medical profession. But I don't think they will bother you too much now - after all, it is not your fault you were misdiagnosed. And since a diagnosis of Behcets makes perfect sense with your symptoms, i don't think they will accuse you of being a hypochondriac. But if they do, just remind them that they are the ones who missed the diagnosis the first time around.
Thank you SO VERY, VERY much for all of your wonderful information, advice and support!
I will let you know how this progresses and what they're going to do about it...