#161250 - 11/10/09 09:48 AM
New Here - AS symptoms/diagnosis questions
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amynpets
First time visitor
Registered: 11/10/09
Posts: 1
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Hi Everyone,
This is my first post. I just discovered this forum last night. So here's my situation. I have not been diagnosed with AS. At most, I've been told my problem is undifferentiated connective tissue disease, which I've been told is kind of a catch-all term when they can't definitively pinpoint another disease. Regardless, it's taken me nearly 3 years to reach that conclusion, so I'll take it for now!
Here's an early 'thanks' to anyone willing to hear me out... It's been nearly 3 long years and no one to talk to about this besides busy docs.
What I want to know is if there are others out there with AS that have symptoms similar to mine, or onset similar to mine. I know AS symptoms can vary greatly from person to person, so if mine don't fit anyone's, to me, that's a sign that it's not AS and I should look elsewhere. (Don't get me wrong, it's not like I *want* AS, but I do want an answer!) I have not yet met medical criteria to be diagnosed with AS, but it's not ruled out in my mind just yet, especially considering that it can take years and years for this diagnosis and nothing else has come this close.
The hallmark for my symptoms is that movement and touch make the pain worse. This seems to be greatly different from AS's hallmark of less pain with movement and exercise. I don't experience much stiffness either. There has been no doubt that my pain is stemming from my SI joint. They think any other pain in my pelvic joints is referred. I'm approaching 3 years of this severe lower back/SI joint pain that has completely turned my lifestyle upside down. I am predisposed to autoimmune disorders because my father has juvenile RA, but my blood work did not show the typical AS markers, although something was slightly elevated (can't remember now). It's almost like that alone ruled AS out. Anyone out there with an AS diagnosis without the blood work markers? I also had sudden onset of severe dry eyes 2 years ago. My doc did notice some decreased flexibility, but I'm generally still a very flexible person.
MRI's have not shown anything more than mild SI joint hardening that they chalked up to being typical for some who has given birth. Although here's the real kicker, I was told my these random docs that did my si joint injections, that there was bony bridging over my joint spaces making it hard for them to get the injections in, even showed it to me on CT scan. I asked if that was uncommon and they said no, not in people around age 70 with arthritis. I was 28 at the time. They did not make this note in my record and MRI's since then have not showed that. I think the current docs think I'm looney, but I know that I didn't imagine that conversation!
Lastly, my rheum doc gave me a trial of Naproxen this past Sept, to help determine if this was truly an inflammatory problem or not. I guess no inflamation has shown up on the MRI's either. Well, the naproxen was an instant success. I've had 6 weeks of freedom that I haven't experienced in years (although I'm gaining weight because of it, even though I'm more active.) I go in for a recheck just before Thanksgiving. I wonder how this news will effect my diagnosis. I think she was seriously doubting this being an inflammatory issue. It makes sense to me though. When I move my pelvic joints or they are touched (massaged/therapy type) it's irritating and they inflame. Stopping the irritation, or stopping the movement, slowing brings the pain down. I don't get how others have inflammatory issues that lessen with movement, not that I doubt you :-) (my dad has Juvi RA, so i know that's the norm.)
If anyone cares to read about my onset of pain, here's the short of it... (Anyone else out there with onset during pregnancy?)
Got pregnant at 26 in Dec. 2006. By Jan 07 I started experience tailbone pain. I was told it was my body overreacting the to relaxin hormone. The pain quickly spread to my SI joint, pubic bone, sits bones, and any other pelvic joint that I missed! It was excruciating and debilitating, and there was no explanation. Docs had never seen anything like it except maybe late in third trimester. Worked with a PT and was told it would go away with birth.
That didn't happen. Gave birth in Aug 07. SI joint pain/lower back pain was worse than ever. Other pelvic joints were slightly less painful. literally overnight I developed severe dry eyes. Continued PT for joints, pain got worse. *Finally* in Aug 08 they gave me some pain meds beyond Ibuprofen, which never worked. To this point everything was blamed on preg and they didn't want to touch me during that or while breastfeeding. Sept. 2008 - SI steroid inj. - terrible procedure, caused a 3 week flare up of pain. Feb., March, May 2009 - prolotherapy - mixed results, nothing long lasting. July 2009 - acupuncture - pain gone for an entire month! Aug 2009 - manual therapy - worst procedure to date, big time flare up, Sept 2009 - saw a rheum., started naproxen - working very well.
Any advice or support you could share would be greatly appreciated. My integrative medicine doc thinks that although pregnancy may have kicked this inflammation off, it's stress and anxiety in my life that is exacerbating my symptoms. Every doc has a different theory or lack of one for that matter!
Amy
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#161253 - 11/10/09 10:25 AM
Re: New Here - AS symptoms/diagnosis questions
[Re: amynpets]
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Jean Angel
Registered Visitor
Registered: 01/18/07
Posts: 1671
Loc: Enid
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I think you can have AS without the genetic marker. Fibro is common with autoimmune diseases-I have it and touch pain is there. Neurontin helps me with that. Glad the Naproxen is helping. Stress can make symptoms worse. Try to be as active as you can. Swimming is wonderful. There are many posts with symptoms. Mine are pain everywhere! Eyes can be effected-pain. Colon trouble is common. Hip and back pain almost a must!!Ha! Neck-eventually. Feet pain esp in the heels is excrutiating! The lists go on-God bless and keep writing-
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#161256 - 11/10/09 11:45 AM
Re: New Here - AS symptoms/diagnosis questions
[Re: Jean Angel]
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JenInCincy
Registered Visitor
Registered: 05/19/08
Posts: 3630
Loc: Cincinnati, OH
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Not a doctor but having gone through 2+ years of attempts at diagnosis, I "feel your pain..." The generalized pain when being touched does sound like fibro but generally, response to NSAIDS indicates inflammation and NOT fibro. So I agree with Jean, sounds like you could quite possibly have both some type of inflammatory condition - spondylitis or other? - as well as fibro.
Connective tissues relax in pregnancy, so that flare up is interesting and certainly points to some sort of connective tissue problem (maybe?)
You mentioned your eyes - severe dry eyes could be Sjogren's syndrome (which is autoimmune) but sometimes it's just dry eyes. Iritis in an inflammation in the eye which can be linked to AS but from what people describe here, it sounds painful - not just dry.
AS and other spondy diseases do not rely on any blood markers for diagnosis, but, generally -
AS: over 95% with AS are HLA-B27+. Majority have elevated inflammation markers (ESR or CRP). 2/3 to 3/4 are men.
undiff spondy: 20-25% are HLA-B27+. Something like 30% have elevated ESR. Majority are women.
It seems unlikely you'd get an AS diagnosis without x-rays showing SI joint inflammation, but you could certainly have another inflammatory condition or conditions. Sounds like your doc was thorough with bloodwork, but you might want to make sure he looked at rheumatoid factor and ANA (screens for RA and lupus, respectively.)
Well, I don't have AS and probably haven't helped you much ... but I can sympathize with your quest and some of your symptoms. I hope you get the treatment you need - sounds like you have a sympathetic rheumy which is a big part of the battle!!
_________________________
Jen, 38, tentative spondy diagnosis, tried Enbrel 8/10, moved on to Humira 9/10; happy partner of James & mom to Evan, 10.5 & Lucy, 9 (Crohn's disease dx age 3, started Remicade 4/10)
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#161260 - 11/10/09 12:52 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: amynpets]
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Tacitus
Registered Visitor
Registered: 06/06/03
Posts: 2102
Loc: Palm Springs area, California
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Hi, Amy:
I strongly believe that You DO have AS because more positive points than negative—
1) Probable misdiagnosis of an autoimmune disease in first degree relative
2) >3mo severe lower back pain
3) Very rapid bone aging: I asked if that was uncommon and they said no, not in people around age 70 with arthritis. I was 28 at the time
4) Relief using NSAIDs
5) Sjogren’s-like symptoms
6) Absolutely correct age of onset (women)
7) Bony bridging over joint spaces (asymmetrical?)
8) Joint hardening (this is called “fibrosis” and is a precursor to fusion in AS)
Negatives—no morning stiffness or stiffness that relents upon exercise or movement, no HLA B27 antigen (this test is often false-negative), no elevated inflammatory markers (CRP and ESR are elevated in about 60% of active AS cases), wrong gender for “typical” presentation (so this makes AS much more likely).
Not mentioned—AS is highly cyclic in early stages, so if Your pains have been constant and unrelenting it would be a negative point.
Just one more thing—the occasional digestive symptom like an urgent requirement for relief when miles from the nearest convenience. And not removing enough water from food at times. Some constipation.
You can perhaps find relief by decrease in overall food intake, but especially starches and especially breaded and deep-fried stuff. Maybe keep a food diary or notice whether You flare within a few hours—up to a day—of eating provocative foods.
Hope You find the answers You are looking for, and relief You need,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAAProfessor Alan Ebringer on Diet and ASRed Arrow --> PhilippinesHodie mihi cras tibi. DO IT (diet) or be done to.
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#161983 - 11/19/09 07:15 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: Tacitus]
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emunah
Registered Visitor
Registered: 11/19/09
Posts: 12
Loc: Maryland
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I would like to know more about the last comment that AS is cyclic in the early stages. I have been reading and reading, trying to figure out if AS is what I have, since the doctors don't seem to have any clear answers for me.
I'd never heard about the cyclic factor but that has definitely been the case for me. Sometimes I can manage just fine taking 2 otc aleve as needed. But the flares are getting more frequent and more severe. Seem to be triggered by strong emotions or stress I believe.
Latest doc said I didn't have any rheumatic disease at all, and no spondylitis, I think partly because I didn't have pain in my spine and because I was in remission at the time I saw him (just went looking for answers and didn't get any.) Unfortunately, I went into a flare shortly after seeing him and now it's in my neck and shoulders, like never before. But I'm not going back to him, he was a real jerk.
I can't afford to get x-rays right now to confirm anything either, although I would definitely be interested to see what they would show. I do have B27 and chronic iritis (which has led to glaucoma and significant loss of vision in one eye.)
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#161986 - 11/19/09 08:09 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: emunah]
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mrye4709
Registered Visitor
Registered: 03/30/09
Posts: 1518
Loc: Oklahoma
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If you don't have insurance I would recommend getting some, any, before trying to get a dx. Once you get your dx you will fall under the pre existing clause. Have you ever taken steroids? any blood work showing anything? Check out the symptoms thread and see if you may have other symptoms. Morning stiffness, other areas of pain? Welcome and feel free to ask questions!
_________________________
I would be unstoppable, if I could just get started.
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#161987 - 11/19/09 08:25 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: mrye4709]
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Banana
Registered Visitor
Registered: 07/23/06
Posts: 3510
Loc: New York
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AS can be cyclic or NOT, so can RA and many other auto immune diseases. In no way, can that be considered a diagnosis symptom.
Hormones frequently cause several different auto immune diseases to flare up. There are genes that are "weak" and an environmental stresser can cause the gene to change and switch into the disease(simplistic description) . Hormonal changes (esp in women) can be the environment stresser. Mine was very mild, or cyclic until menopause when it went into a terrible severe stage and never changed. So pregnancy can do it, so can puberty. It is also common in RA.
Now did you have any symptoms in your teens? How old are you? The disease usually occurs teens, early 20's.
So do you wake up stiff in the morning? Do you wake up in pain during the night? If it is connective tissue or tendon problems--that hurts worse with activity.
Have you tried steriod pills? and did they help?
As was mentioned, dry eye can be another auto immune disease and not iritis. Did you see a eye doctor to get that diagnosed? That might help.
_________________________
Arava, once a day. Actema IV once a month, folic acid, prednisone 2mg daily, Cymbolta x1 daily, Celebrex, Calcium. Boniva IV every three months. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
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#161994 - 11/19/09 09:18 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: Banana]
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emunah
Registered Visitor
Registered: 11/19/09
Posts: 12
Loc: Maryland
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Thank you for your responses, I already feel less isolated!
I do have insurance, but it's high deductible, so I'm in bad shape (financially and physically) if I ever meet it. But that's a good point that perhaps I don't want an official diagnosis.
I am 42 and my symptoms started in my early 30's, maybe late 20's. I am stiff in the morning and stiff after sitting still for too long. I have had pain at night with this latest flare, can't hardly sleep when it's bad, too uncomfortable in the bed.
I was initially diagnosed with Reactive Arthritis, when I first went to a rheumatologist in 1999. Now they tell me I don't have that, and indeed my symptoms have changed. I have stiffness, soreness, doesn't always seem to be in my joints, more often it feels either muscular or in my bones, I can't really tell. It travels around my body. At first it was a thumb joint ( when it was called Reactive arthritis) but that faded years ago. Currently it's in my upper legs, arms, shoulders, neck. It can be triggered by a mild injury, such as overexerting myself a little. But once it's triggered, it's there to stay, not just a few days to recover from a mild injury.
I took oral steriods a couple of years before I had any sign of arthritis, for severe eczema. I can't take them again, I cried the whole time.
I definitely have iritis, have spent many afternoons with the iritis specialists. I have it in both eyes right now, taking predforte every hour in both eyes for 3 weeks, what a pain. But it's better than the headache I get when the iritis isn't being treated.
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#161995 - 11/19/09 09:48 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: emunah]
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winelover
Registered Visitor
Registered: 12/29/08
Posts: 1302
Loc: Perth, Western Australia
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....... I am stiff in the morning and stiff after sitting still for too long...
..... I have stiffness, soreness, doesn't always seem to be in my joints, more often it feels either muscular or in my bones, I can't really tell. It travels around my body....... Currently it's in my upper legs, arms, shoulders, neck......
Hi, all of this could be AS
stiffness in the morning is a classic symptom of AS
people with AS also get stiff after sitting still for long periods (or even for a short time in some cases)
the inflammation from AS also causes painful muscle spasms
other things can feel like bone pain - such as a bad muscle spasms, bursitis, or referred pain from your spine
you can also get bone pain from vitamin D deficiency, and vit D deficiency is apparently common in autoimmune diseases
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#161996 - 11/19/09 10:23 PM
Re: New Here - AS symptoms/diagnosis questions
[Re: emunah]
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Tacitus
Registered Visitor
Registered: 06/06/03
Posts: 2102
Loc: Palm Springs area, California
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I would like to know more about the last comment that AS is cyclic in the early stages. I have been reading and reading, trying to figure out if AS is what I have, since the doctors don't seem to have any clear answers for me.
All right, I will tell You about how and why AS is cyclic—and more so in the early stages.
The half-life of the agent provocateur—the cause of cellular damage in AS—is about 100 hours. It is an immunoglobulin that is found as a dimer (doublet) in lymph: IgA and it is specific to the bacterium Klebsiella pneumoniae so designated IgA-Kp. Also, while our immune systems are encouraged to devour our own cells, IgA-Kp are crowded out as reaction products are removed from the active sites by the lymph ducts.
The IgA is produced in response to the presence of the bacterium, which multiplies in proportion to the consumption of starches and then has access to our secondary immune system through ‘Crohn’s-like microlesions’ or otherwise increased intestinal permeability.
The B27-rich Osps (Outer surface proteins) are found mostly in collagens I, III, IV, and V and these include especially the protecting collagens at joint capsules and even the eye membranes—the uvea—affected in iritis.
Because You have had Your eyesight compromised, I will be totally frank about how eliminated the major severe symptoms of this disease. You will hear B.S. arguments by people who have not overcome AS, but I have overcome this disease and remain here to offer my story for those who have ears, (let them hear); I:
1) Quit NSAIDs cold turkey ten years ago, and have never regretted this decision.
2) Eliminated as much starch from my diet as possible. This was difficult for a vegetarian, so I became a carnivore once again (after 22 years).
3) Began taking antibiotics. Those particular agents that destroy or prevent our nemesis germ from reproducing are effective but other antibiotics with no action against the germ also have no anti-AS activity.
It was mostly the combination of strict diet and the right antibiotics that allowed me to totally overcome AS. Now although I am stuck with the damage after many years suffering with this disease (diagnosed in 1978, but only found out about the cause in 1998), I no longer get iritis, which is the primary reason I had to eliminate this disease; my eyesight has been severely affected due to many episodes of iritis.
Doctors can be DANGEROUS, and especially those who cannot diagnose AS. Any B27 individual who has had iritis and exhibits other symptoms—I do not care how ‘transient’—has either AS or PreAS and anyone who cannot figure this out is wasting Your time and health. X-rays can help diagnose ADVANCED AS, but there is no reason to allow even SIJ fusion to happen; no reason to let AS advance—Professor Ebringer exclaims “WHY WAIT?!” Treat Yourself and treat early enough to avoid that characteristic damage.
Now You might understand how AS begins as a very cyclic condition but evolves into one long flare—because we begin taking NSAIDs that actually make the disease worse while making us less aware of this fact by decreasing the pain enough to allow the damage to continue. We take these NSAIDs and dull our senses not only to the pain, but also to the connection with food. Before I began taking NSAIDs, I found that I flared badly after eating certain foods—especially those breaded and deep-fried—but these were all starches, in retrospect, and today I can be absolutely certain my case is firmly related to starch consumption. You can pay a quack to tell you what you want to hear, but the truth will soon become accepted, albeit not soon enough for so many of us already damaged by the medical establishment.
And now You can know how and why AS is related to stress, for the transit time of the bowel contents is increased due to the “fight-or-flight” response, and the bacterium in proper medium at just the right temperature multiplies at the familiar geometric rate. Beware the character of Your content.
Before NSAIDs, I controlled my symptoms by fasting. As long as 20 days and I enjoyed a very long-lasting remission as a result, but it was ignorance of foods that always got me right back in the club.
I hope that You can also overcome AS and benefit even more than I have from this information,
John
_________________________
Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAAProfessor Alan Ebringer on Diet and ASRed Arrow --> PhilippinesHodie mihi cras tibi. DO IT (diet) or be done to.
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