Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hey, all. I just wanted to report on my visit with the new rheumy yesterday. She is amazing! I can't be anymore pleased. When she walked into the room, she immediately noticed the problems with my feet. She tried to move my feet/ankles from side to side and couldn't. Neither could I. She said it looked like they were starting to fuse, which was a bad sign.
Luckily I'd sent a copy of an MRI of my entire spine that I had done over a year ago, when I was first searching for answers. She literally said, "ah, ha!" When she saw it. She said it showed inflammation, which meant I had ankylosing spondylitis. It's in the same family of autoimmune diseases such as RA, and from my research so far, it has many of the same symptoms. I asked her why the problem with my ankles, and she said it was a manifestation of the disease. So AS causes other joint inflammation and pain, plus of the tendons. That explains why the backs of my heels hurt me so much of the time.
She said that obviously my treatment of just MTX wasn't working, to which I agreed! That was one of my problems with my former doctor. So she immediately started me on humira. They even gave me my first shot yesterday. She was so excited and full of hope for me! It was contagious, I have to say. I left there feeling so encouraged and hopeful whereas with the other doctor I usually left in tears.
I checked out the AS group on DS, and it doesn't seem nearly as active as this one, so I'll probably still hang around here. After all, AS is in the same family as RA, and the symptoms are pretty much the same. I'm just so happy to finally have a definitive diagnosis. Btw, she also understands fibro, but I told her that was actually taking a back seat to the symptoms of the AS.
Thanks, everyone, for your advice and caring. We're all in this journey of chronic pain together. Hugs!
Luckily I'd sent a copy of an MRI of my entire spine that I had done over a year ago, when I was first searching for answers. She literally said, "ah, ha!" When she saw it. She said it showed inflammation, which meant I had ankylosing spondylitis. It's in the same family of autoimmune diseases such as RA, and from my research so far, it has many of the same symptoms. I asked her why the problem with my ankles, and she said it was a manifestation of the disease. So AS causes other joint inflammation and pain, plus of the tendons. That explains why the backs of my heels hurt me so much of the time.
She said that obviously my treatment of just MTX wasn't working, to which I agreed! That was one of my problems with my former doctor. So she immediately started me on humira. They even gave me my first shot yesterday. She was so excited and full of hope for me! It was contagious, I have to say. I left there feeling so encouraged and hopeful whereas with the other doctor I usually left in tears.
I checked out the AS group on DS, and it doesn't seem nearly as active as this one, so I'll probably still hang around here. After all, AS is in the same family as RA, and the symptoms are pretty much the same. I'm just so happy to finally have a definitive diagnosis. Btw, she also understands fibro, but I told her that was actually taking a back seat to the symptoms of the AS.
Thanks, everyone, for your advice and caring. We're all in this journey of chronic pain together. Hugs!
And the treatment is similar to RA!
hugs...............Jen
But it is a shame that he wasn't more on top of things. I'm just thankful that I finally ended up with a wonderful and very competent new doctor!
Now, as to this fibro diagnosis: was it one of your posts where I posted the chart showing the overlap between fibro trigger points and common sites for enthesitis in the spondyloarthropathies? If not, pipe up and I'll see if I can find it again.
I'm so glad you landed up with a good rheumy. How many frogs did you have to kiss before finding her?
From my reading about AS, it was mentioned about the back of the heel pain and the fact that there's inflammation of tendons. So I don't know. As I said, she literally said "ah ha!" When she saw the inflammation of my spine. It's all very confusing to me, but it seems like the treatment plan and even symptoms are the same. I feel like this doctor will discover whatever needs to be discovered....does that make sense? And to answer your question, it took me many years and about 5-6 doctors to get to this point.
Juls
I had never heard of AS so will have to do some research as my neck, back and ribs hurt so bad sometimes. My Rheumy just tells me it is part of the fibro and get frustrated with her. Haven't had back x-rays in about 8 years.
At my initial visit the doc thought I had AS. Then the blood work came back stating other wise.
Just had a visit with the dr treating my spinal mess. Both cervical & lumbar are creating problems. I still wonder about AS.
I'm thrilled you feel like your in good hands with this new doctor.
Understanding Fibro is a plus. Finally you have a bio. Just knowing your in better hands matters.
I'd be interested in that chart Alto.
Here's to better days a head.
Hugs
Sammy
Look at the links provided, too. I'm always skeptical of a fibromyalgia diagnosis. There is no etiology defined, no reliable imaging or blood tests to diagnose it. You may have stumbled into an explanation that fits your symptoms more closely.
Sammy, what blood test did your doc use to rule out AS? (I ask because there ain't one!)
AS is apparently very hard to diagnose. My daughter has a friend (27) and she is a physiotherapist. When she started getting pain she went through her medical books and figured out she had AS.
Her doctor agreed with her immediately, based on the inflammation in her spine and other markers. But the rheumatologist said AS if very hard to diagnose, and the average time from onset to diagnosis is 10 years!
So I am glad you found out so soon. I also kind of wonder about your fibro diagnosis. Of course, you can have both, but it sounds to me like since your symptoms didn't fit RA you were just given fibro to send you away and not bother the doc anymore. Well, time will tell. I have fibro, but I didn't get it till over 10 years after RA. And it simply isn't a limiting factor in my life like RA.
Well, keep us informed as to how the Humira goes.
That's how my first doctor ruled it out & of course tested positive for RA & SJ.
Better question would be can you have both AS & RA?
Something to note for my next visit.
Just thrilled your getting answers & treatment.
Blows my mind the drastic differences between doctors.
Your a prime example of why it's important to seek those other opinions when your body tells you one thing & the doctor tells you another.
Can't wait to see how you do on Humira.
Sammy
I was so amazed that this rheumatologist went ahead and gave me the first shot, seeming to be sure that I would be approved. She and the nurse both acted like it wouldn't be any big deal to get approval.
So we shall see.