ankylosing spondylitis

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kickledee
New Member


Date Joined Apr 2006
Total Posts : 6
   Posted 4/8/2006 6:26 AM (GMT -7)   
Arthritis of the spine, hips, shoulders, etc.... My brother and I have had similar back problems since our late teens. Pain starting in the hips then making its way up the spine as years go by. Recently, Ryan(brother) came down with iritis (inflammation of the iris) which is rare except in cases where the person has the marker gene HLA-b27. This gene is also a major factor in AS, Crohn's disease, auto-immune deficiencies, other types of arthritis. He was tested for the gene and found positive. He told me that I should be tested because of all the symptoms I've experienced over the years....pain in hips and back, 6 months of swollel joint all over where I was unable to walk (in college) then it's sudden disappearance, chronic uticaria (hives) that have only gotten worse as I get older, and still the daily chronic back pain. I got tested and it came back negative. We were both floored because I have had many more symptoms than he. They do say that 10% of AS cases don't have HLA-b27 but in one family to have similar symptoms but different reasons sounds impossible. Has anyone out there had similar symptoms of this gene and had a negative result? I'm seeing my PC doctor on Monday and will request an Mri done on my hips and spine to see what's going on. It's so frustrating to experience the symptoms of HLA-b27 and not hvae the gene.
-feeling a little freaky confused

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/8/2006 10:21 AM (GMT -7)   

no, no you're not freaky!  :-) welcome to HW keekledee.

i think you need a GOOD and thorough evaluation and the whole sha-bang of rheumatic and autoimmune blood works and xrays and MRI's.  i think you'll find a bunch of obective findings that wil lead to a good treatment plan.

genetics is so wishy washy with RA, CD, and all AI diseases.  they say there is a STRONG correlation...but then like your situation!....this happens a lot!  and is very confusing to people and doctors.

every person will manifest disease uniquely.  as you'll find and read here @ HW....some folks have positive labs up the wall! and are less symptomatic.  and others are all physically & clinically symptomatic...yet lack the gene markers/titers/ and assays for the diseases.  and some are a combo of both! LOL.

it's tough.  it's intricate. and it seems nothing comes very easily.

what is you next plan of action?

i wish you good luck. and please write back soon.

sincerely,

erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 4/8/2006 8:12 PM (GMT -7)   
No, you're not freaky...

You can be HLA-B27 negative and have AS, there are loads of people who are. You can also be B27 positive and NOT have AS. Iritis can be an auto-immune issue and you don't have to have AS, Crohn's or any arthritis to have that as well, although it is more common to those who do have an AI issue. Everyone's symptoms are different - men seem to fuse differently (and faster in alot of cases) than women - we seem to take forever to fuse (but not always). You need xrays (or an MRI), blood work and a good rheumatologist who will listen and then prescribe an appropriate course of action. Getting treatment now is imperative to help slow down the fusing process.

I am B27 positive, I believe my sisters are not. I inherited my AS (and possibly my RA) from my dad, my sisters are fine. My son (so far) is also fine, although he has not been tested for his B27 status and he is 24.

May I refer you to the Spondylitis Association of America website - www.saa.org (I'd make it a link, but I don't know how!)? They are a great resource and it might help you both understand your AS (and symptoms) better and can provide you a basis of questions to ask your doctor.

Good luck.

Sherree

kickledee
New Member


Date Joined Apr 2006
Total Posts : 6
   Posted 4/11/2006 6:44 AM (GMT -7)   
Thank you so much for replying! Yesterday, I saw my PC and my neurologist. My PC ordered all the blood work she could and did X-reays of my spine. She also found a pea-sized hard lump on my thyroid. I'm not so worried about that. I also have Bipolar disorder and was on lithium a few years ago. Lithium causes thyroid problems that can sometimes be lasting. She's running thyroid tests as well. Then I went to my neurologist becasue he has been following me for neurological problems that he thought my be MS. He told me that he doesn't think I have MS but he another autoimmune disorder and that some disorders can attack various nerves throughout the body rather than in the head or spine, like MS. He told me that not only can you have AS without a positive HLA-B27 but that there are 7 subtypes that can't be tested for. My PC referred me to a rheumatologist (it's about time...she's also new..my last PC did nothing for years) I'm trying not to get depressed about it because I really don't know anything. I also found out that my Bipolar isn't related, just another bad mix of genes. How do I stay positive? I have a 3 kids...10, 7 and 7 months. I'm afraid that I've given them all these bad genes. Aaaaahhhh!!!!! sad

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/11/2006 6:47 AM (GMT -7)   
My rheumy told me that AS can take 10 years to show up in your tests. A little discouraging I know. Hopefully you can get some relief from the rheumy.
Hugs, Des
Co-Moderator ~ IBS Forum
 
~My reality check bounced
 
 
Please help Healing Well continue to help others by donating  http://www.healingwell.com/donate
 
Dx: IBS 1989, Diverticulosis 2004, UC 2005, Sjogren's 2006
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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/11/2006 8:55 AM (GMT -7)   
tongue  kickledee don't worry!  all those negatives can make a positive! LOL tongue
i think i got the crap genes in my family. lol. 
if it makes ya feel any better:
 
on my mom's side: Great Aunt Elsie was a paranoid schizophrenic that thought her Korean tenants that lived above her were trying to kill her. she had 7 turtles.  she flushed her medications downthe toilet & blammed it on other people.  and her house smelt real bad.
my mom's got real bad depression and social anxiety disorders, panic attacks. (a touch of agoraphobia too).
 
on my father's side:  they're all nuts.  anti-social.  alcoholism, depression & suicide runs rampant.
 
                                                :-) .....I THINK I TURNED OUT OK..... :-)
well, phsycologically that is!....health wise, not so good.
 
but alas, we MUST STAY POSITVE!
 
evreyone is complex in one way or another.  that's what makes things unique.
 
oh, i was on Lamictal, Neorontin and Depakote at one time to help seizures...i swear it caused some sort of OCD!  confused while on them, all i did when someone spoke was count syllables in their sentences!!! confused
 
if anything, i hope this post made ya smile at least!  hang in there.
sincerely,
erin   
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


kickledee
New Member


Date Joined Apr 2006
Total Posts : 6
   Posted 4/13/2006 6:16 AM (GMT -7)   

Erin,

Thanks for the words of encouragement. My biggest problem this week is Doctors. My new Pc forgot to order an MRI and to refer me to a rheumatologist before she went on vacation for 2 weeks. Her nurse tells me that nothing can be done until she gets back? I called a rheumatologist and tried to make an appointment. Apparently, there are only 3 rheumatologists in the state of Maine and the earliest appointment is at the beginning of August!!! This state is horrible for healthcare. I previously lived in Massachusetts, which has excellent healthcare, and am regretting now that we moved here. Today I'm going to look into rheumatologists in Boston, although my insurance won't cover it. I just want someone to help me feel better because my PC's have never done more than tell me to take Ibuprofen. (that doesn't work) It really is frustrating. Hopefully, whoever else is reading this in fortunate to live where there are actually doctors. Enough complaining! You're right about trying to see the funny side of our "bad" genes. I always have to remind myself that there are other's worse off. Of course, there are also others much better off! (not fair!) You are strong and I admire that. I admire everyone who is going through this. Thanks again.

Kickledee :-)


kickledee
New Member


Date Joined Apr 2006
Total Posts : 6
   Posted 4/13/2006 6:37 AM (GMT -7)   
Me again. I just realized that the bottom of your reply was a list of your medical conditions. If I'm not being too nosey, are these conditions all a result of autoimmune disease? You ARE a very strong person and I admire your ability to share your thoughts and advice with others. How do you do it?
Kickledee
Bipolar disorder...diagnosed 2003, Chronic Urticaria/Angioedema, Chronic Backpain...undiagnosed as of4/2006
Meds: Lamictal, Effexor, Trazodone, Ativan


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 4/13/2006 10:39 AM (GMT -7)   
eyes  geesh, where do i start?  began over a decade ago. long story short:
contracted Lymes disease around age 13:
(fevers, joint pain, seizures all throughout school...was ignored by docs & myself because....heck, i could still play, do sports, have fun. so who cared?)
age 16: joint pain & fatigue got worse; weird blood work showed up. showed positive for RA:  again, docs & myself ignored it because I COULD STILL WORK, go to school, work out, etc...
 
seizures got worse, joint pain got worse, the GUT got worse in college.
tested for EVERYTHING UNDER THE SUN.
 
at age 19 had EXTENSIVE workups for Lymes. turned into neuroLymes (thus the fevers, seizures, paralyses problems).  the CDC had my blood! hah! they did a lot of high tech crap to blood & biopsies....dated the bacteria to be at least 8 years old!!! it mutated several times!!! = antibiotic resistant.
 
3 more years of doctor care, the sequala of the Lymes triggered an autoimmune disease. thus, the RA.
RA was far gone, progressed FAST!!! so it hit my heart, lungs, and every major joint.
 
the Chiari Malformation: could have been born with it or it could have developed from the Lymes...no one knows. ( nor do i care at that...i have bigger issues. the seizures...at least they pass)
 
Lymes GONE!! in 2004!!!! yeah hooray, but left with terrible AI disease.  :(
RA way out of control. and still is.
in 2005 suddenly lost 30 pounds in a month, blood, "D" etc....viola, colonoscopy is Crohns.
 
all the doctor's do believe that it was a chain reaction.
i mean, a person having a very bad bacterial disease for a decade? without treatment....that's trouble.
 
so a lot of damage was done from the Lymes and the RA both gone untreated for a very long time.
 
it's an interesting case.
 
when i was 16, if my PCP had said,"hey...lets look into this RA"  i feel things wouldn't have got THIS bad.  but...the past is the past.  i was a kid, what did i know?
 
so whatever hasn't killed me yet has made me MORE determined! (can't say has made me stronger, LOL.)  :-)
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 4/14/2006 9:56 PM (GMT -7)   
I was tested for HLA-B27 gene and it came back posative and my Dad is posative as well so that is where it came from and I RA,CROHNS,OA,APAND SJERENS AS WELL.I have three sister's and one brother and none of them have this gene my mother has not been tested but she is going to check and see if she carry's the gene.
Thanks
Curley......
a.k.a.Mela...........

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