Connecting Dots: Bechterew Disease

After reading about the dx of Bechterew Disease (ankylosing spondylitis) posted by ChauBao, I started connecting some dots...I never considered it for me, but now, after reading through some AS sites/forus, perhaps I should have been looking there all along.Back in the summer, I had my 3rd (maybe 4th?) bout of Iritis, and this last time, it took months and LOTS of steroid drops to clear it up. My eye doc was very concerned and had my blood tested for the genetic marker protein HLA-B27, which is present in 95% of folks with AS.Sure enough, I tested positive, but had no symptoms other than my eye, so haven'y given it too much thought...til now.Since Mid-December, I have had twitches, sensory issues, and mostly, pain sin my bicep, shoulder and heel of my hand and some perceived weakness. The AS forums I visited have many dx'd people with those exact issues, as well as the twitches. Also, they mention pains in the buttocks (sorry!), which I have also been experiencing. Anyway, I think I need to see a Rheumatologist. I suspect I have been visiting the wrong forum-- though this one, and the great folks here, did keep me calm through my MRI, Cat scan, and EMG tests! (All clean)Any thoughts about my situation? Suggestions? ALways glad to hear from you guys. I have Sent a PM to LaurnetCH; hope to hear from him for sure.One thing does seems odd about my case, though-- I have NO issues with back or neck! (yet?)Thanks guys!

hei eddisorry to say: but welcome in the club. HLA B27 and iritis is almost certain AS or a similar systemic illness. my docs said the combination of the two makes it 90 percent a precursor or symptom of AS. if you have pains in the backs or/and in the joints then you do have even more symptoms of it. i had irits one year ago (acute uveitis on one eye), quite a severe one. they tested me HLA B27 positive also. I have been to a rheumatologist 10 days ago. He did not hesitate to diagnose me with AS, mainly on having a look at my anamnesis.the interesting thing is, we both habe twitching and/or nerve pain. they said to me that there is no correlation, but i doubt.best wishes, laurent

by the way: AS can start in the joints. almost did not have back issues so far, at least not where it is ususally supposed to start. my shoulder is almost always inflammated as well.i wonder how many in this forum have been tested for HLA B27!?

Yes! I wonder how many may also test positive as well. It's interesting your docs correlation between the twitching, etc, as I have read so many people's posts saying they had them and several AS sites listing twitching as a potential symptom!Have you ben given any meds/treatments to hep with any of your symptoms? From my reading, they seem to have many things that appear to be quite helpful.

i don't find any connection between AS and twitching on Emilyomouse websites. can you please post me 2-3 links on this? Do you have them local or widespread?not sure if the twitching really is a symptom of AS but maybe another HLA B27-related systemc manifestation!? hope not it is leading us to something sinister with the L letter inbetween as i read that people with AS have a higher risk of it. however this comes out of a forum, so it is not really proofen.my neuro doubts.bloody docs, i don't trust them at all. they directly wanted to do a therapy with regular injections with tnf alpha blockers which downregulates the immunesystem in a manner that you have to fear lymph cancer and severe infections of every flu virus and every normal bacteria. injections every two weeks would cost me approx 30'000 swiss francs per year (in dollars 45'000?). and this in a phase they even don't know severity of my AS as it develops differently in each person. usually this is the rheuma of the very young, higher age at onset (around 40) have a good chance of a milder manifestation. the doctors are prostitutes of the pharma industry! i said back off with this crap, took 2-3 antiinflammators and changed my diet. i cancelled diary and meet, lessened omega 6, lowered my carbon intake and made attention to a high omega 3 intake. i take supplements (q10, omega 3, zink, selen, b-complexe, vitamines c and e). the pains lessened since then in my case. the docs visit was 10 days ago. a new problem i have now is swelling eyes and terrible fatique, tough i am not sure they are related.

Yeah, I am 46 so it is also my understanding the late onset is "better."If you enter "ANKYLOSING SPONDYLITIS forum twitches" you will see a number of links to folks discussing As with twitches and pains, etc. I started going thru them, and they lead me all over the web where I saw it was fairly common. I found no reputable medical sites liking AS to ALS (except to say that AS is FAR more prevalent."The Centers for Disease Control and Prevention for the National Arthritis Data Workgroup estimates that AS and its related diseases affect as many as 2.4 million people in the United States. AS is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig's Disease combined. "This from I know it's not a "good" condition for us to have, but personally, I am greatly relieved-- we can manage this!

the question is if i can handle all the autoimmune issues like my vitiligo, as, bfs and else combined. i really cannot cope all this crap anymore....every year i get something new.....

Anyone whose signature reads "BE THE CHANGE YOU WANT TO SEE IN THE WORLD," can handle this... and more. Says something about you, in my opinion.Hang in there, friend!

thanks eddi....let me know how it is going! the ALS connection with AS i have read in an ALS forum.

Hi all, was just reading your posts about AS. My husband was diagnosed with this about 4 years ago. Has bad back issues and has had iritis 2 times. But, I don't think the twitching of BFS is directly related to AS. I DO think BFS is an autoimmune condition and my doc has said if you have one autoimmune condition, you are likely to have others.

iritis can also be seen as a separate condition but it is directly linked to AS. i do however not think that bfs with AS is autoimmune related but related with inflammation of nerves and mucle tissue on one side and the risen need of magnesium because AS absorbs a lot of it...