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Not sure? waiting on dx...new to this board (spondyloarthropathy)

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Posted 1/9/2011 7:25 PM (GMT 0)
Hi,

I am new to this board but have been in the sjogrens board. I just had my first rheumy appointment and this was the first time I have ever heard of this disease. I see dr. Peng at virginia mason in seattle and I couldn't be more pleased! He drew 44 vials of blood, a hip xray and a lip biopsy along with a couple of urinalysis'!

He said I will get my dx through my symptoms and which are the more severe and bothersome...right now it is my joints, muscles and spine that are my chief complaints. My gp had dx me with sacroilliac joint dysfunction before my rheumy appointment and sjogrens, but dr. peng looked at all my symptoms and said probably spondyloarthopathy of some sort (ankylosing spondylitis I think), secondary sjogrens, RA, Lupus, antiphospholipid acid antibodies (sticky blood), and the intern threw out fibromyalgia at me.

I am a mom of 5 kids...his, hers, ours kind of thing, work in an autism room (which I love) where we take severe cases (5 adults to 10 kids), and am only 35.

How long am I going to be able to continue doing the job I do? I have already had to stop reffing my kids' soccer games a couple of years ago cuz of a bad knee....didn't know spondyloarthritis could affect other joints than the back...I'm learning. When I read the pamphlet the doc gave me I almost cried cuz I used to coach gymnastics, have always been very active and my job requires a lot of physical demands.

Have any of you also been sensitive to light, sound, taste, hearing? I have started to get naesous over sounds and smells lately. It is driving my family nuts....well I guess I am driving them nuts cuz they are driving me nuts nono

Can you please help me sort out how many of my symptoms could be coming  from spondyloarthritis and whiich ones I should look at other AI diseases?!

Thanks!! smilewinkgrin

Sha

Post Edited (Sha49) : 1/9/2011 12:36:15 PM (GMT-7)

Posted 1/9/2011 8:27 PM (GMT 0)
First, that's a lot!
second, whoa slow down and wait to see what your bloodwork shows. it's good they did the
bloodwork but they should've waited to give you any dx before the bloodwork comes back.
That list is long enough to scare anyone. could be the sjogrens giving you the light
sensitivity it does that to me, go to your eye doctor and get your eye's checked for
dryness as they have treatments for that. also ask your dentist about a mouth wash rinse.
As for your job, if you feel good and don't think it's bothering you then hold off on quitting and
don't tell anyone anything till all the test results come back...
Hope this info helps and that your feeling better soon...
((((((((((((((((((((((((((((((((((((Sha)))))))))))))))))))))))))))))))))))))
Keep us posted on those results, healing hugz and well wishes...
Posted 1/9/2011 9:32 PM (GMT 0)
chartreux~

Thanks for the quick reply! I got a dx of sjogrens already from my gp who sent me to the rheumy who ordered all the other tests. I have a positive ana and ssa and scheimer test. I just got permanent plugs in my lower ducts. I have a great dentist and ophthamologist.

The rheumy gave me pamphlets on all the other stuff I listed...not a dx of those. The only dx I have so far is the sjogrens, which he thinks is secondary to one or all of the above skull   Yeh...enough to scare anyone. I have had 5 miscarriages, 1 removed from my tubes and 3 live births. This is why he thinks I may have antiphospholipid acid antibodies (sticky blood).

I have just recently within the last couple of years developed the joint pains. I thought it was from breaking up the bar fight and getting crushed but they kept saying it was degenerating even after surgery so I wonder if it is from an AI disease that is eating away at my joints.

I get weird skin rashes that start like a sunburn, feel like sand paper, then peels and itches! It plays hide and seek a lot! I break out in hives for no reason! I have lost 20 pounds cuz my taste has changed so much since I had a flare and got thrush. I also had a UTI, kidney infection, kidney stone and a lot of lower back pain durning that time along with that horrible rash!! I haven't been the same since! That is when all this really started to get bad....before symptoms were mostly in my joints, but I have since then...they are all over the board and can have a different set every day!

I have an identical twin which has diabetes so all her stuff like mine, but worse, are always blamed on that! They can't do that with me cuz I am not diabetic! nono  

I am now having all kinds of  sensory issues also like hearing making me nauseos (lil repetive noises) and smells can make me lightheaded...I had a vasovagal response that scared the ENT doc that was doing my lip biopsy. The formaldahyde the suture was in about made me faint, throw up, I got white and flushed...couldn't even talk....all from a smell!

Thanks for any and all insight that can tell me what I may be looking at! I had no idea any kind of arthritis could cause so many systemic issues!

Sorry for the book!


Sha

Posted 1/14/2011 12:23 AM (GMT 0)
Hey, how are Ya, it's just a thought but if you have a acute spine problem you could get the names of two of the best spinal surgeons in town, preferably one a neurosurgeon and let them look at your MRI and X-Rays. Rheumies tend to diagnose all spine problems some kind of spondylitis.
Posted 1/15/2011 8:57 AM (GMT 0)
Spinal soldier~ that is a very good idea! My PT guy said my pain is in my bones more than my muscles, but I fhave pain in my joints, muscles and bones! I will hopefully hear from my rheumy next week.

My xray is the only test they have ran so far in my back but it was really my hips and pelvis. He report mentions minimal spurring of the pubic symphysis and incidental bone island is noted in the right acetabulum.

All I know is my back is killing me!!

Sha
Posted 1/24/2011 5:15 AM (GMT 0)
Kinda update~

I have a dx of spondyloarthropathy and am going to talk to rheumy on the 11th of february. He did call me and told me he still believes it is early ankylosing spondylitis and has dx me with secondary sjogrens (already knew that one).

He said that i have other overlaps that he will get into on the 11th like the Lupus, RA and fibromyalgia pamphlets he gave me cuz I have symptoms of those too.

Am going to go to a hearing specialist also cuz he believes I have neurosensory hearing loss. Also may see a neuro pretty soon for other issues!

One ologist at a time I guess!LOL

Sha who thanks everyone for the support!
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