Saturday, March 23, 2013

ankylosing spondylitis..yea, I know, what?

For those of us that live with ankylosing spondylitis, making sure we have doctors that are educated on our disease can sometimes be hard.  Right now you may be saying doctors don't know about AS?  How is that possible?  You must be wrong.  Well, I'm not wrong and it gets VERY frustrating at times.  AS is one of those autoimmune diseases that really can be confusing for all involved, even the doctors!  What needs to be done is kind of a going back to the drawing board on their education and knowledge. 

Here's 4 "things" I've seen and read about AS
-men get it more than women
-it starts in the sacroiliac joints (hips)
-must see damage on x-rays/mri's
-shows signs of inflammation in blood work
These four things are wrong---first off, women don't get diagnosed properly because often times they have NO sac joint damage, because it affects other joints like the shoulders, ankles, etc.  X-rays and MRI's take YEARS to show any AS damage (insert from experience, had shoulder surgery a few months ago, had an MRI, when the doctor got in to "see" the shoulder, he couldn't believe all the damage--said it looked like a bomb went off, my MRI did NOT show all of this).  Also, from experience, for the most part I always show no inflammation on the blood work.  It's called sero-negative, which means you have it but it doesn't show up.  Thing is, I know I have it, I can see the joints swell and go down, etc.  It actually makes me a bit frustrated when a doctor tells me I have no inflammation...in my mind I'm thinking, "yea right".

Until we change these HUGE mistakes, I think more and more women (and men) will get misdiagnosed and suffer with no treatment!

Went to new eye-doctor and finally!!!!  An eye-doc who knows AS!!!  I've been suffering for over 2 years with pain in my right eye and severe migrains (which is a sympton of AS)--and everytime I go to eye-doc they say, well you don't have inflammation so no iritis.  This doc first thing says well, I see you have inflammation ON the eyeball.  Your AS thinks your eyeball IS a joint.  F I N A L L Y!!!!  Further in the exam, I do not show inflammation in the back of the eye-which is good, and we decide that's all the other docs have looked at.  Thing is they've never seen the inflammation ON the eyeball--why is that?  Doc says, because he knows what AS looks like.  Works for me doc and I'm glad I found you.  He says, but I can look at your face and tell---exactly what I keep saying!  ugh!  So, treatment is a low dose of steriod drops, which can cause cateracts.  If this doesn't work, we'll go to a higher dose (again which can cause cateracts faster), then in a month if not better, a steriod SHOT IN THE EYE---ok, the drops better work!!!  I asked if this will help with my headaches and he says, that's the plan.  I like this plan! 

As for the shoulder recovery, it is coming along slowly.  But, thankful to have less pain everyday.  I just keep reminding myself that the doc said, "it looked like a bomb blew up" and that my recovery will take a YEAR.  Yep, a year!  It does frustrate me, that again, the MRI did NOT show all the damage to the joint.  So, I wonder....how bad does my "skeleton" look?? hmmm  I know that my neck is showing disk problems, spurs and narrowing..for all of you that want to say, I have that...no you don't. I don't have "old age arthritis"....this gets frustrating.  I hear this a LOT and it's not the same.  Again, I wonder what my neck truly looks like if my shoulder was way worse than the MRI showed.  I know one thing...I do NOT want to look like this...
 This is a progression of AS...see my neck/back troubles are not like yours, unless of course, you have ankylosing spondylitis.

So, I will fight through living with ankylosing spondylitis and while I do, wish for more knowledge and a cure, I also wish that folks would understand more---that education on this disease and the pain and suffering that those of us who have it live in, would be more understood.  See being AS FREE is not going to happen.  This is a life-long disease.  We will never say, we're in "remission"...don't know anyone that is.  For me life is a daily "challenge"...how do I feel, what can I do today?  Those are things I ask every single day.  I'm thankful for a loving, caring and patient husband and I pray my children always stay protected from AS.  See it doesn't just affect me, it affects my family.  They live with it as well...that makes me sad...

As always..."AS has my body, but NOT me".  So, I always end with this and what does it mean, well, I can let the disease "own" me or I can "own" the disease.  I chose to live the best I can, staying as positive as I can in a negative body.  My family deserves that...so AS will not take that part of me or my family!

Monthly Remicade infusion.  One of those drugs you can't live with our without.  Wipes out the immune system so now, I catch everything!  BUT...it helps me "live".

9 comments:

  1. Thank you for this post. I am almost the same situation as you. I too had shoulder surgery in December, with massive damage that the MRI did not show. I recently visited with an eye doctor who has a father with AS and he immediately knew my eye was in trouble; I had been complaining to my GP about vision problems and he never put two and two together. I could go on and on! My daughter who is twenty was recently diagnosed, and as devastating as this was to hear, I am thankful that I am able to help her understand and manage the emotional issues of having this disease. It took 29 years for me to receive the diagnosis.

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    1. Thanks for the reply--and I certainly understand about your daughter. It hurts us so, when our kids hurt or are sick. Glad you have an eye doc too!!!

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  2. Love the blog... its really interesting. I am currently seeing a rheumy to do with joint pain which I have had now for about 6 years. I still havent got a diagnosis even though my labs are positive for an antibody specific to juvenile arthritis. I havent been diagnosed because I havent got any joint damage on my MRIs. Im starting to worry that it might be AS since a lot of my symptoms match. Have you got any advise?

    Thank you... Jenni

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    1. My only advice is that MRIs do NOT always show the damage---you see the above the post from Brandi and myself who've both had shoulder surgery recently--MRI did NOT show how bad our damage was. MRI's do not always show any damage. I would get another opinion. It took me a couple of docs before I was diagnosed correctly.

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  3. Love reading your blog. I was diagnosed with AS about 18 months ago after been dealing it with 10 years and numerous doctors telling me it couldn't be arthritis because I was too young. I too struggle to get anybody other than my rheumatologist to fully understand and get it.
    Where'd you get the bracelet? I would live to have one.

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    1. There's a facebook page for the faces of ankylosing spondylitis and we all wrote about our disease/diagnoses and were sent braclets.

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  4. Discovered your blog today and found it very helpful, uplifting and encouraging! I'm 31 and have inflammatory arthritis that is mostly affecting my spine, hands, wrists, elbows and knees. My blood work was positive for the HLA-B27 marker, but I don't have a diagnosis yet.
    I'm struggling a lot to find proper health care which has become quite discouraging. But the worst part for me is that I have 3 young children. I'm not able to be the active mom I think they need at their young ages, and that is a hard reality for me to adjust to.
    I appreciate all that you share and your positive attitude. I also appreciate how you push for others to learn more about AS.

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    1. I couldn't imagine having to deal with this horrible disease and my girls be young. My suggestion would be to rest as much as you can. Some things just have to be put aside--who cares if the dishes are done, enjoy that time with your kids! Also--it sounds as if you do have AS. For females, our symptoms can differ from males. I'd keep searching for a doctor who knows AS and females--and can give you a proper diagnoses. If it is AS, it needs to be managed now, so that it won't get worse.

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  5. Thank you. I will heed your advice. I also plan to join the effort to educate others about autoimmune disease.

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