HLA B27 Positive: BFS Connection?

I wonder how many of us have been tested HLA B27 positive as I was. maybe bfs is related to this gene variant?

Hi laurent, i'm planning to take this test as some people in my family have spondylitis, although i don't have any classic symptoms i think it's good to know. I also noticed something weird, the first movie i found on youtube when i searched bfs is About one guy from australia that is hlab27 positive ant has a plethora of autoimmune diseases inckuding neiromyotonia wich was misdiagnosed intially as bfs. I think science hasn't uncovered yet all the autoimmune links related to this marker and that spondylitis is just the one that's better documented.

I am + for HLA B27. My doc is sending me to see rheumatologist next week. Had spinal exam-- no issues, though I have had several bouts of iritis.

i'm negative ... But i have other immune markers, ANA 1:100 speckled and antiparietal gatric cells with normal B12 levels.

So they tell you this and what is the outcome? they give you meds that might help you with symptoms. As far as i know there is nothing that says if you take this 3 x a day and your cured med. Rather than keep testing i would strongly advise in getting your life back on track, manage the pain and the symptoms that grind you down, manage your anxiety and start living.

I 100% agree with Raindog...I mean really?? What does any of this testing going to prove or solve?? Are you trying to get your self another label?? What is that going to do for you?? I just dont understand how you can be getting any enjoyment out of your lives at all with all this constant searching and testing Not trying to sound mean at all, just dont get it.....Please take care Robynn )

I agree with RainCat and mommyLDN due to my own exeriences. I had some rather rare things in my life and they started testing me...and testing...and testing.....I wonder how many litres of blood they took from me. I think Emilyomouse docs just like looking for markers....And they found lots of stuff there, I can tell you. Lists of blood markers, HLA markers,immune stuff, increased killer cells, thrombophilie markers, elevated leukocytes, I'm a walking marker-for-somewhat-ever. But what were the results...so far: nothing. I have these, and that's it. Actually there will be many many people out there that have the same irregularities as I do, and there will always be people that have strange symptoms. There's no medicine for markers. So now I have BFS, and some signs of fibromyalgia. These may go hand-in-hand,or it may be a coincidence. But the way they are treated is the same: do whatever helps you. I had a very bad start into this BFS-stuff, as I had all the nasty symptomt staring within only a few days and it scared me s**tless. But I did the only thing possible: accept that I have another weird thing. And look what might help.And work on my anxiety. And the symptoms really already decreased alot, although it's only 2.5 months ago that I was a twitching wreck that could hardly walk due to tremors and pain.Actually I have been treated with medicine that was working on my immune stuff so I could have my babies ( low-dose-cortisone prednisolone and octagame). For the time of the infusions , the allergies and some of that stuff went away. But the prise was high (and I'm not only talking about the 3000€ I had to pay myself as these kind of treatments are not paid by insurance), the treatment messed up my immune system even more. After each infusion I felt like I was having a really bad flu, aching joint etc.. I would catch every germ that's flying around in the air.And now I'm happy that I only have BFS. And that I don't need this treatment usually give to people with MS, as the side effects are just bad.OK ,this has been a really long answer but what I was trying to say: be happy that it's "just" BFS. And after we get our anxiety under control, just have a look about how much of BFS is left, and if it's really not possible to live with it. Because I'm kind of sure that the side effects of any treatment affecting the immune system would be worse than BFS itself. I just stopped searching for all that strange stuff. The more I or the docs search, the more they find. And I will be left with questions without answers and a bad feeling in my stomach. Maybe, maybe not, the docs often don't really know about these things. Now and then another "expert" shows up that claims to have the answer to all of your problems. And won't have. I think these times have had a big influence on my health anxiety.Espacially for HLA markers I'm sceptic: of course there are a lot of "markers" here, as the HLA proteins are the fingerprint of your immune system They are just supposed to have a great variety of different patterns. And of course there might be a link between a certain mutation and some phenotypes. but it's kind of like saying: redheads will more likely have sunburn. There is no way of changing a redhead into someone with black hair. They might dye their hair and wonder why they still have sunburn. Whereys the only good thing to do would have been to put on more sun-protection.We are all different. And even more, our genes are different. Each of us shows thousands of irregularities, most of them not even discovered. Some of them will effect us, some won't. That's just part of who we are. Just thank god every day that our genes did not give us a really nasty disease so far. And if parts of BFS really are genetic (I still believe that it has a lot to do with anxiety. But anxiety is part of our character and might as well be due to our genes, so maybe one day the will find a marker for high anxiety), then I'm still happy that it's BFS-gene and not BCRA-gene (the one that causes breast cancer). We are all full of anxiety of ALS because we are afraid to die, to loose this life we love. But we have too see how many hours of this live we love so much we waste with anxiety and looking for answer noone can give us. Take careChrissi

Well, i'm kinda split on this one, when it comes to your body it's better to know than not knowing, because there are some autoimmune conditions that can mess you up really fast if you don't treat them in time, on the other hand there are lots of people that have a borderline rheumatic condition that never develops into anything, so my guess is the best is be optimistic and live your life but also get checked by a rheumatologist or internist every 6 months or more frequent if new suff appears, BFS is not deadly but it can be associated with other immune dysfunction issues. In my case i'm pretty sure my facial pain (constant) and visual hallucinations are not bfs-related.

If you would have constant facial pain and visual hallucinations You will not look for some answers? Please...

Yes, but constant hallucinations is not typical for BFS, is it? I'm talking about accepting BFS and benign things in general. If I had hallucinations (others that the floaters and perhaps eye migraine that appear in stressful times) I would go tell my doctor about it, sure.

IMO, if the hallucinations are that bad and the facial pain that severe then its hard for me to believe that your doctor would not be looking for the answers for you....nobody should be sitting there trying to diagnose themselves...thats what doctors are for...they see the symptoms then work to diagnose the condition....at least thats how it works here in the US.Take care allRobynn )

Well yes and no, I was basically ignored by two doctors and had to look for one that will actually believe me. So it all depence who you will get. Sometimes they just don't know how to help you, so than what? Just wait ? I understand why kostuk is looking for sow answers. But it is important to don't get obsesed and stop living your life.

I told many doctors about the hallucinations and pain, one gave me tegretol that did nothing for the pain, another sent me to the psychiatrist and he wrote scotomas on the chart although scotomas is not what i experience, so no, even if they're dramatic you don't always get attention especially if you mix these with other symptoms and the overall number is big. I'm going to an universitary center and a headache clinic next, i recently moved from my country of birth and i hope here healtchcare is better but i don't exepct a cure or even answers, maybe some meds that take away 30% of the pain. By the way, i have and had constantly low ESR 2-5, but i have positive ANA wich is what many doctors told me it's not very likely as autoimmune conditions create inflammation when i asked them to test me. And at first it was negative then positive, so i'ts a constant rollercoaster ride for me. Sorry for highjacking the thread.

If you really care about you ANA's, you should again ask your doc about them. I was testes various times for them as they were considering lupus and they were positive once, but negative 3 times. They told me that ANAs are only considered to be told "positive" if they stay positve for a certain period of time,as they can rise up vor varying unspecific reasons .But I agree,for me Tegretol only helps with the twitching, but not for my sensory stuff I have to deal with a lot, not for the pain. BTW I had eye migraine this morning. That was the punishment for writing about being glad that I havent had it for some time....I started to have visual stuff when I started working on the microskope in my original job. I realized that it is often due to a certain way I do the accomodation of my eyes. Maybe it will help you , if they start,to accomodate as if you were looking at a point very far away. And try to stay away from very bright things, for people with this stuff it will make it worse, esp. neon light. I guess you've been checked about your eye pressure. Well,for your reassurance: my eyes were checked really good because I had lasik 2 years ago. There's nothing wrong with them. Most likely my veins just react to stress like mad and make my eye nerve go crazy. I swear, looking throuhg the microskope into the bright light, I could see my own blood cells floating !!!!!

I get purple dots, white blotches, pinpoints of light all very fast, under a second. I also get monocular blind spots that can last tens of seconds and the standard migraines with aura that last 15 minutes. I also get shooting stars, a point of light that travels across my visual field and stops somewhere. It all started a few weeks after the bfs, it's not floaters, it's not entopic phenomena (cells when you tare at sky), it's something else, my eyes were checked 3 times by doctors, fundoscopy, peripheral field testing, nothing. So it's not in my eyes.

I know some of these, esp. the purple dots (i never had another colour except purple, white and yellow), and the monocular blindspots and the shooting stars. I also often get the vision of everything getting darker and lots of "snowflakes" . But this usually when my blood pressure is down. Hmm, i've been living with these for as long as I can think and my sister is sharing it, but I can understand that it is scaring you very much when they appear suddenly, especially while you have to deal with all the other BFS stuff. But it doesn't necessarily have to be something sinister, just for your reassurance. I 'm living with these and they didn't get worse except for the very seldom happening eye migraines when one of the eyes gets totally blind (following a skotome) for half an hour.

Dahm RainCat man, you scare me, i mean this crap scares me but if you're alive after 5 years i guess i can look forward to telling stories to my grandchildren I guess i should try some marijuana, i live in the netherlands, anyways when i go to the docs they look at me like i'm a junkhead, maybe it will take the pain away. The docs here probably see s-h-i-t too all the time so it's not that special, "what? you see blue blotches? what did you try, the purple haze or the misty smoke?" ... Did the LDN do anything for the visuals?

Well kschoenhaut, maybe you should give it a try.....I know peolpe here that get great help from marijuana, for chronic pain and I know people that even treat their spasms with it, with much less side effects that the regular medicine. If it wasn't illegal here, I'd rather try it than chemical stuff....just my point of view though, not really a general advice....