How Self-Education Helped In My Diagnosis
By Guadalupe Rivera, Mexico
Hi, my name is Guadalupe, I'm 31 and and a spondaholic.
So... How did I get my dx? Luck I guess. Over a year and a half ago, my dachshund became paralyzed. Don't yawn! It has a lot to do with it, I promise. Since that day I began researching, reading and learning everything I could about back diseases in dogs. Mammals are mammals, so that helped me a lot with *my* disease. It turns out that my baby had diskospondylitis. That diagnosis made me very much aware of some of the symptoms dogs experience. I even looked at some doggy X-rays and noticed how their spine changed after the disease.
Later, around December 10, 2004, I went to see my doctor. I had lost 4 kilos in the past 2 months and had felt very tired. I also had a bit of a back pain between my shoulders, like a little needle, nagging me now and then. My doc said that the back pain was probably due to a "pulled muscle" or just stress and ran a lot of blood tests on me (thyroid, glucose, cholesterol, etc), all of which came back normal. I just had a little bit of a UTI and some amoebas. Gave me a few antibiotics, some amoeba zapping pills and sent me home.
On December 26, my family and I were on a road trip and I fell asleep. When I woke up my left hand was a bit numb and tingling. I thought "I must have fallen asleep on my hand" and figured in a few minutes I would regain feeling. Yeah, right. "A few minutes" became 26 hours and by that time my left hand was completly numb and my whole arm tingling, so I went to the angiologist, since I figured I must have had a blood clot or something (I also mentioned the back pain, and *again* I got the pulled muscle and stress theory). A bunch of test and X rays later revealed nothing wrong with my veins, so he gave me an NSAID and sent me to the neuro surgeon, as he thought I had a ruptured cervical disc (one of the tests was a neuro conduction test which said that I had an interference on a nerve, which had it's source between c6-c7).
The neuro was ready to cut me open and give me titanium discs. The doctor changed my NSAID to Arcoxia, added Lyrica, and sent me to get a MRI. I insisted that I still had a back pain, so I *begged* him to also get me some back X-rays, as I figured I must also have had a ruptured thoraxic disc, since *that* was the source of the pain (my neck never hurt).
When I picked up my MRI and X rays: SURPRISE! MRI was perfect! But... the X-rays looked like Godzilla's: my back was filled with spurs. I'll be darned! Those look so familiar. So I started surfing the net for the information on doggy back problems and asked a couple of friends (with dogs with back problems) and they told me to look up spondylitis or osteoarthritis. Bingo. Back I go to the neuro and ask away: Is it a disc? No. Is it osteoarthritis or spondylitis? No idea. Can you send me to the best rheumy in town? That he could do.
By that time my symptoms were a bit worse: Lyrica had taken care of the "electricity" and numbness down my left arm and hand, but my back pain was much much worse and *all over my spine* with some accute points. It was a dull pain all over, with some sharp pain points. Daytime was ok, but by the afternoon I wanted to chew someone's head off. There was NO position I was comfortable sitting and standing was terrible too. My knees started hurting one at a time.
I was desperate, so I went to acupunture and that helped a bit, mostly relaxing my muscles. I only found a break in lying on my bed. I was still tired most of the time and could not work (I own a spa and I have to do facials and body treatments which require a lot of bending).
I got the rheumy to see me, showed him the X-rays, he did a physical and I just went ahead and asked: Is it spondylitis? He said, "Yes." He also said there are several kinds of spondylitis, and he didn't think I had most of them, so either it was ankylosing, or undifferentiated. Ok. I took a deep breath and just asked away: so... assuming it's undifferentiated, What are the chances that, in time, this will develop into ankylosing? He said: "at least 50-50, we have to do the gene test". He told me later he did believe it was anky, but for insurance purposes, he could not file it as anky for the time being until the other symptoms developed. He introduced me to the Physical Therapist, who, later on, spat out that the doctor had told him that my diagnosis was, off the record, ankylosing spondylitis.
The rheumy had more X rays ordered for me: my SI joints were ok, however, my pelvic bones are not: it seems there is some swelling of the pelvis and some early signs of, what could later on, become a fusion. Off the record, my tail bone hurts like HE*L, but I'm told it's because it's a bit crooked... time will "tail", I guess.
So, again, How did I get diagnosed? Luck! First, because my dog gave me hints about the symptoms and where to look for the right info, and second, because *I* kept on pushing the doctors to spit out the disgnosis they don't normally want to spit out until, I assume, the patient is either mad in pain, or with her entire spine fused. But then again, God Bless Mexico! Here docs are still very open with patients and give us a lot more information, and Thank God my rheumy is great and doens´t feel theratened about me doing my own research and asking questions away, or pushing him to dig deeper.
Today is January 12, It was an Ok day: most of the day without back pain, and the pain that I do get, mostly goes away with some therapy excercises. I have been feeling a bit tired though, but I guess it's also from the diet change: I started the LSD diet yesterday... and I will kill for a doughnut! I am CERTAIN I will be in the statistics with the ones that had this one flare up and never had any problems again.
My life will have to change, but it will be for the better, as I will have to eat healthier, be more active, take vitamins and supplements, and enjoy every minute of my life! I will research every single alternative treatment there is for this, and ... Why not? Maybe even do a new mix of my own! The Mexican approach to AS. There are a lot of properties to Chiles and Tequila - that might be the next "thing" to try ;)