A.S. Face 1140: Melissa Walker

Face 11401140

Hi, guys!

First off, I would like to say, “wow! i’m not alone!”

My diagnosis of AS was a journey in itself.

It all started last year, in my 29th year. At least the pain did! Ever since I’ve given birth to my son, whom is now 5 yrs old, I’ve always felt a little “off” with my health. I would go to the doctors for several problems such as fatigue; inability to control my weight; moodswings; unexplained menses irregularities; bowel problems; and, the list goes on. I was always a very fit and healthy person up until the birth of my second child. I didn’t understand what was happening. I don’t smoke, drink or do drugs, so why was I in such bad shape? My doctor had me tested for for several things (diabetes, thyroid issues, and even STD testing, although I was in a monogamous 7 year relationship, and I haven’t been around). She even had my head scanned for tumors. No matter what test was performed, nothing could be found.

Aside from the horomonal issues that we had basically chalked up as the woman changes, I was feeling pretty okay for an overweight lady of 29 yrs.

In March of 2013, I woke up one morning with severe pains in my groin area and my upper legs burned. I didn’t think too much of it, because I had started a new exercise routine which included lunges and squats. The following day, I still had the same intense pain, and told my husband that if it hadn’t left by the next morning, then I was going in to have it checked for pulled muscles or injury. Day 3 had arrived. I woke up. I tried to get up, but I had heard the most disgusting crunch and snapping sound come from my body that I had EVER heard in my life! My husband immediately jumped out of bed, just in time to catch me while I was falling to the ground. My husband heard the noise, but at this point didn’t know it was from my body. He looked around me and said, “what was that noise? there’s nothing there.” It was at that point that he began to pull me up, that I burst into tears because my knees were sore and swollen and my legs didn’t work. I couldn’t walk! WHAT was wrong with me?! Off to the hospital ER we went. That was the first time I went to ER. I was in the hospital ER a total of 7 times before they decided that i REALLY needed a thorough checking over. They had seen all the previous visits in the time frame of one month, and had a list of the symptoms. Symptoms included : loss of sensation in legs, sore, swollen knees, crackling and grinding noises of bones in all joints, unexplainable body rashes, pinched nerves in back and buttocks, inability to close index finger on left hand, pain to walk on soles of feet, burning sensation that radiates from back to front, sore ribs, pain in heels… It just so happened that day, while being admitted, there was a doctor on staff that was filling in from Africa. He came right into my room and took my case over. He had me lay in the bed and had pulled, twisted and touched all the “right” spots on my body to get reaction. He knew EXACTLY where to agitate to get response. He looked at my tending doctor and said, “get this young lady into xray and MRI right away. she has ankylosing spondalytis.” Sure enough, when all the tests were done, his confirmations were right! The reason I had every test done on me except for this one is because apparently it’s more common in men, and not in my age range. (I am still researching this disease). So my MRI and CT scans of my bones didn’t show my symptoms. That’s when they decided to do a thorough full body bone scan. my whole body, including my SI joints, were lit up like a christmas tree! even the techs were surprised. usually a CT scan would catch it, but not in my case. so now i had the explanations and things started to make sense with my health.

-fatigue (which doctors believe is the cause of my mood swings and inherited from my pain) -my fingers have started curling inwards -my feet are sensitive to touch or if they get hit or stepped on -the burning sensation i get in my back -water retention and swelling in the back -body rashes -my knees and ankles swell to the point that my days are undetermined. everyday is a surprise when i wake up! -i walk slightly hunched to my side, with my knees inverted -my bowels are irritated almost always (it’s always either constipation or diarrhea, never normal) -knee aspirations (three syringes from one knee alone!) -the need for assisted devices on occasion (a walker, tub chair, versa-frame for the toilet) -and everyday i mistake the black spots in my vision, and attempt to swat at insects that aren’t there (kinda funny, but not. hey! i have to find some humor somewhere!) -and on occasion, trouble breathing and rib pain

i am glad to have been given the link to join this group! it’s so hard. i am not working right now and that is really hard on my mental health and cuts at my esteem. my confidence is down, too. it’s hard being to be sexy when you have JUST turned 30 and have to use assisted devices. (and, because my husband couldn’t get me to the toilet upstairs quick enough and i peed myself). but i am glad that i have a wonderful husband to help! and he doesnt treat me any differently than he did when we were dating, except that he helps me more. it’s his love that helps me overcome the dignity losses i suffer.

i hope that by sharing my story, others can see if they relate, or maybe i can help someone feel comforted by knowing that…. they are not alone!

xo

Melissa Walker North Bay, Ontario, Canada


3 Responses to “A.S. Face 1140: Melissa Walker”

  1. Dear Melissa,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Thanks for sharing! My smptoms started at 15, but the chronic severe pain didn’t kick in until after a car accident when I was 31. Wasn’t correctly diagnosed until 43, unfortunately. Kept telling the specialists & doctors that it wasn’t normal for a woman in her early 30s to have a walker & cane for the bad days & a toilet seat elevator & knotted rope tied to the footboard to help assist her up to a sitting positions in the morning. Humira changed my life! Still have daily pain & fatigue at 47, but so much better than before! I’m so glad your husband is such a helpful & caring partner! Wishing you peace & comfort…Tonya

  3. thanks, tonya!
    yes, my husband is wonderful to me. he could’ve left me, but chose (and still chooses) to stay! it’s nice to have that.
    i take low-dose chemotherapy. i’m not sure how much it is helping or hurting (it IS hurting!) but it is trial and error until we find out how to slow down the progression. i am progressing very quickly. i walk like i am very elderly, and my bones are all affected. my back and knees are the worst troublesome bones. i can’t run, or even walk at a normal pace. and i think the grey hair i now have is about 5 inches worth from the roots.
    it’s not nice that you suffer from this at all, but i am glad to have someone else to relate to. lately i have been feeling up and down, emotionally. it’s hard to live when you feel so useless in more ways than worthy. i am trying to work on this, but im having lots of trouble, and will be mentioning it on my next doctor’s trip!
    i hope that the humira is helping you lots! xo

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