Hi folks. My name is Bethany, and I have been tentatively diagnosed with Behcet's, however, I have a positive ANA speckled, at 1:80.
I wonder if it is not Behcet's, but Lupus. I don't want to settle on one diagnosis until we know for sure, so I can get the right treatment.
I have had a range of symptoms over the years, but right now dry eyes, lack of sweating, muscle weakness, and numb patches are what is bothering me the most.
I was able to look over my clinical paperwork, and all the other antibody tests they ran were negative, or in the normal range. One thing I noticed though, is that there is one antibody slightly higher than the rest, the JO 1. It's only at 16, which is quite low, but I wonder if it's worth keeping an eye on because there are more present than the others. Do antibodies fluctuate over time?
Hi. I have lupus and was finally diagnosed after 3 years. They previously thought I had Behçet's disease. I was put on infliximab originally that made me millions times worse, it's meant to help with behcets and make lupus worse! I have always had a negative Ana test but have a positive hlb27 genetic marker test that can indicate an auto immune disease. A dermatologist under my consultants clinic finally diagnosed me after seeing my terrible skin problems at an appointment. My skin has got worse over time and now have the classic butterfly rash and reaction to the sun.
I am now on mycophenolate mofetil, prednisilone and plaquenil that has made me so much better.
Think the Ana can fluctuate.
It's so tricky, my consultant said that you can have cross over between diseases and have a bit of both! I hated that because I didn't know where I fitted in!
Really hope you can get a conclusion and definite diagnosis soon.
Thanks, I hope you feel better as well. I've not been put on any meds except for migraines. Propranolol. Didn't really help; made my headaches worse! (or it seemed) Been told I have to stop breastfeeding soon so I can try other things.
Hi Bethany, I was diagnosed 25 years ago. Tests for over a year had all come back negative, even tho I felt like I was dying. Suddenly, they spiked and the docs told me I had lupus, and a really bad flare up (duh, I'd been telling them something was really wrong for a year.) Since then, it has made no sense to me at all - there are times when tests show extreme inflammation, antibodies high, high sed rate etc. Yet I really feel okay. Other times I can't even get out of bed, and the nurses call w/lab results and chirp, "Well you're doing great, everything's normal!"
I seriously have no faith in medicine, it's random luck if what your body feels like & your biochemistry line up so someone believes you & can put you on meds that will help.
I take comfort in knowing I'm not alone in this. And, acupuncture is my other comfort. It's the best, when I can afford it.
Hi. I'm jumping on this thread - did you have to be in the throes of a flare up before you tested positive for ANA antibodies? I've had organising pneumonia, systemic joint pain and fatigue for two years now. Now developed scleritis in my left eye. Always tested negative for ANA. Trialled mycophenolate mofetil for about 8 months alongside my usual steroids and hated both. Gave them up in January 2017. Symptoms continued. Back under the rheumatology this week but wondering if I'll get a positive test for ANA antibodies. X
Hi Bethany. It is good to try and be patient if possible because I often think my impatience led to the wrong diagnosis. Well it probably didn't actually - but it is so hard to get mind in sync with what we are told by specialists that I sort of blame myself for getting diagnosed with RA before my present symptoms had become more pronounced. I was so concerned about not being able to move my fingers or wrists for a while that I pushed my rheumy quite hard for a diagnosis. That said I'm sure he wouldn't have diagnosed me had he not been reasonably certain at the time.
I am now getting referred for a second opinion. I have the symptoms you describe plus nerve pain and peripheral neuropathy in my feet and legs and nose sores and bleeds plus hives which flare all over my face and neck. But whenever I see my rheumy he treats me as an RA patient with a few autoimmune extras and I don't think this is the right direction for me although the DMARD treatments are pretty similar. If I continue to be treated as an RA patient who's RA is only moderately active rather than a patient with a more complex autoimmune presentation then I fear the disease will take an even greater hold in time. My autoantibodies are equivocal - which I think means have remained borderline - over the past year. I have tried three DMARDs to date but do not tolerate them well. I've just gone back on one called Methotrexate - which is a gold standard drug for many of these inflammatory conditions. My ESR is always raised to high (anywhere between 17 and 70) and reflects the way I'm feeling pretty accurately. Other than that it really is best if doctors can treat us by our symptoms rather than our bloods I feel.
Sadly I couldn't cope with acupuncture at all - too many sensory/ nerve problems and I found it really uncomfortable although the woman who administered it was really nice and highly qualified.
Twitchy
in reply to
I am not being impatient per se, I am branching out, just to make sure they nailed it. I have been going through whatever's been bothering me for more than ten years. I've been told my toes had "frostbite"...in Southern California, told I had herpes...with three negative tests, told I am a malingerer, which really is the worst one because it made me nervous to see another doctor for anything. And then I got pregnant, and that is what got me to open up to docs again. I just want to know what's going on.
And now, it's becoming obvious to the doctors that something really is up. Some brisk reflexes, Babinski's sign, central serous retinopathy, and multiple dislocations...it's funny how they are now paying attention.
Thank you so much for getting back to me. Of course, there are a lot more symptoms that I haven't listed, but am too tired to do so. I'm sure you all have been through this. So tired of it all.
Just had a spinal tap the other day so now on top of everything else, my back is sore. I haven't let myself get depressed yet, but I am getting close. I'm in the army, and I also being threatened with discharge, and I don't want to leave. I want to stay in. It's all closing in now.
Hearing something from other people who are currently going through the same problems is, if not reassuring, comforting. Misery love company, you know. Hugs all around.
You poor thing. I know the hell of being called a malingerer/ hypochondriac although for me this accusation came, not from the medical profession, who are at least sure of my autoimmune status - but from a person I thought was a friend and fellow sufferer! I think this is the worst one too because I then felt so unconfident about listing my symptoms to my medical team and convinced myself no one would take me seriously. I even stopped talking to my husband about how I felt. I really hope you get a diagnosis very soon and can keep your job if this is what you want.
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