A.S. Face 0024 : Victoria Kellogg

My name is Victoria, and I am 21 years old. I live in pain of every single minute of every single day of my life.  On a scale of 1-10, I LIVE at a 7 and it only goes up from there. I cannot remember what it is like to not be in pain. I thrive for normal, and continue to go to school, study, and make good grades as best I can.  What would be the point of my life if I did not try?
I got into a car accident back in November 2007, fractured my pelvis, received damage to L4 and L5 in my spine, and had reverse whiplash and a closed head injury.   This happened 3 days before my 18th birthday.  (Most of my childhood memories and long-term memory is hazy and/or nonexistent because of the closed head injury.) I was in a wheel chair for two months.  I went thought all sorts of pain meds, and was healing fine for the most part. In May of 2008 my pain changed, and took a turn for the worse.  It started with sacroiliac pain that was incredibly intense; it ran down both sides of my legs.  My hip joints would become so incredibly swollen I had to give up wearing jeans most days.  I would have numbness, and tingling.  My feet became so swollen and my toes blue.  My lower back and sacroiliac area have NEVER stopped hurting since.  As time went on, I never got better!  Upper back pain, shoulders, hands.  My ENTIRE body was falling apart at 18 years old!  I visited doctor after doctor, has millions of tests. MRI, CT-scan, x-rays after x-rays.  Conclusion:  there is NOTHING wrong with you; you are just here to get pain meds!  Going to the doctor and hearing that is truly devastating.  The medication list began to grow including Anaprox, Naprosyn, Mobic, Sulindac, OTC NSAIDs, Anti-convulsive, anti-depressant.   Four allergic reactions later and even hospitalized meant back to square one.  At this point, I no longer wanted to live.   I told my doctor that, they scheduled me for a pain management appointment.  They asked all the questions, a physical exam, and order blood work then sent me home with a shot of some sort of NSAID.  Physical therapy was ordered, along with psychotherapy and anti-depressants. I had been seeing my doctor several times a month.  When my blood work came back, she said I was positive for the HLA-B27, wrote me a prescription for Paxil and Tramadol and sent me home.  Confused, I did research.  Demanded another appointment to discuss what I had learned on the web.  I asked for a copy of my result, across the top of the page DIAGNOSIS = Ankylosing Spondilits.  My doctor said she did not want to tell me because she said there is NOTHING more they can do for me.  At this point, I requested to see a rheumatologist.  After fighting, they finally said I could.  My appointment was August 22nd.  I had been wishing my summer away waiting and waiting. My appointment finally arrived and my rheumatologist just asked me some questions, I filled out some papers and left.  More x-rays and blood work were ordered to confirm my secure diagnosis of AS.  When I went back, the results were inconclusive and so a new NSAID was written and I was told I need an MRI to confirm. The discussion of biologics was had, and is the next step if this new NSAID did not work.  The new NSAID did not work at all.  Biologics are my next option.  My only problem is that I go to a University, filled with sick people.  I cannot see how someone with a compromised immune system could thrive in that situation. I had a new primary care doctor in the mix of all of this.  He seemed to think, AS was for sure what I had, and had been treating me for it.  His way of treating me was just to combat the depression and nothing else.

In-between my initial diagnosis I have also added on costochondritis that just will not seem to go away.  I am 21, 5’4” 103lbs, supposedly in the “prime” of my life and I feel like an 80-year-old granny lady.  Currently, am taking only Tramadol (when I do not have class) and that is it.  I tried re-visiting old NSAIDs in hopes that one of them would work. I go to school full time, and I will be graduating in May with my BS in biology.  I am pre-med and planning on going to medical school to become some sort of medical doctor.  My belief is this: The reason I am being pushed so hard is so that I am forced to make a difference. Every event that happens in my life is another step toward something bigger. If I did not believe this, I would fall apart.

Michigan United States of America


16 Responses to “A.S. Face 0024 : Victoria Kellogg”

  1. Dear Victoria,
    The same thing happened to me, the doctor said that I had DISH nothing can be done, it’s no big deal go home and learn to live with it. I did for years then when I needed spinal surgery. I went to all the doctors I had seen to retrieve my medical records and on one was. Told patient she has Ankylosing Spondylitis ( which he didn’t) told her to go home and learn to live with it and terminal. I confronted him and it was not pleasant. So much time wasted. I fought and did everything possible to have a better life and I a and do. I am now 52 yrs old. Please I beg of you, do not take this lightly, you are worth the fight, you are worth trying everything possible. Don’t make assumptions about how a medicine will affect you. Try what is best for you and use precautions and give your self that chance. I take remicade, and also have serious medical conditions beside A.S. I have been around the public every day of my life. I have been blessed. Please try,
    Sincerely Cookie

  2. Look into a low starch diet, I have done a lot of research on it and can work for some. I am getting ready to start it but since I have been a vegetarian most of my life I am working on that first. Good luck and keep pushing on.

  3. You seem to have the perfect mentality when it comes to trying to combat this disease. At times it does feel like a test, which is exactly how my uncle and grandfather found it! Keep your head high and continue to smile through it all, I am sure you will make a brilliant doctor especially if you are able to help individuals suffering from AS 🙂 x

  4. What a beautiful woman you are!!!! Go go the biologics. They can be a miracle. I ride the NYC subways, jammed packed with germy people and do not get sick.

    It will get better. Anna

    Anna West said this on October 19, 2011 at 3:11 am

  5. Incredible, your doctor didn’t even want to tell you you had AS, and didn’t even want to refer you to a rhumatologist… You are really couragous to make such studies, I do mine part-time, I feel much better that way. Apparently biologics are not so bad about getting viruses etc because now they target some parts of the immune system.

    yamaryam said this on October 19, 2011 at 3:27 am

  6. Oh Victoria! You are so beautiful and so talented. We need more doctors, nurses, physios with your experience and compassion. I wish you all the best in your path forward.

    Our biologics are controlled by a gov owned pharma that denies almost all applications for bio drugs. My current diagnosis is TRAPs, but I am going to start demanding someone look into AS as my hips have been riddled with arthritis for the past 4.5 weeks.

    It’s such a lonely, awful journey with pain.

    Jen said this on October 19, 2011 at 3:53 am

  7. “The reason I am being pushed so hard is so that I am forced to make a difference.”

    thanks vic
    keep studying

    jake chegahno said this on October 20, 2011 at 4:48 am

  8. Thank you all for the kind words. It means a lot to me.

    I hate how hard it is to get a diagnosis for this disease. Apparently, many have had problems with this diagnosis. I have considered the biologics for a while. It just scares me. I have classes that work with all kinds of microorganisms, they say only people with compromised immune systems would have problems. Thus, I am sure this would put me at risk. I am having a hard enough time with my classes and trying to manage them with the pain, getting sick would only complicate my life more. I am almost done with my undergraduate degree, I am struggling here toward the end, but I keep going by telling myself: The reason I am being pushed so hard is so that I am forced to make a difference. Every event that happens in my life is another step toward something bigger.

    I think I may have other autoimmune disease as well, only time will tell. I wish the best for you all. Someday, things will be different (I hope).

    Thanks again,
    Victoria

    Victoria Kellogg said this on October 20, 2011 at 10:42 pm

  9. I am an a second grade teacher. With A.S. I am on Remicade. Never, ever get sick. I watch the cuties (sicknesses) go around and around my class. Snot everywhere! I don’t know if it is a good or bad thing, my immune system is still in hyperdrive. Sometimes I feel something coming on, I rest, and my body takes care of it. Like Cookie said, check into it, don’t sell yourself short. When it works, I feel so much better….. I deserve it!

    lisa kepler said this on October 22, 2011 at 4:27 am

  10. i am so sorry lady…i am 36 …i have AS since 1996…was 22 years old then…my story is same!

    Yiannis Siouras said this on November 4, 2011 at 4:26 am

  11. Thanks for sharing your story. You are an inspiration. Elizabeth face#40

  12. Maybe your journey with AS is for you to find better diagnostic methods and better treatments, who better to treat AS than someone who understands the excruciating pain it gives. I keep telling my doctor while crying I hurt so bad all the time please help. I was finally put on narcotics for pain after years of misdiagnosis and being accused of seeking drugs. After my diagnosis it was easier to get pain meds but harder to get real treatments. Where I live in a small town in a rural state of West Virginia there are few Rhuematologists and many patients. It takes years to get into one and they are several hours drive from me. My GP tries but does not understand AS to treat me properly. I too am hoping that with proper treatment my life will improve. When I am having a severe flare and hurt so bad I dont want to go on I tell myself just wait tomorrow will be better. It is not always but the severity of the pain changes sometimes from hour to hour. I managed to get my Master’s degree but now am looking for a job I can do in so much pain. Good luck on your journey. If you ever need a friend who understands find me on FaceBook.

  13. Victoria
    That is an awsome and an all to familiar story. So many Dr’s just don’t know about AS or what to do about it. I was Dx’ed about a year ago ( after 4 years of looking ! ) and my Dr put me on Methotrexate and Enbrel, both immune suppressants. I was not satisfied with the results or the risks associated with those drugs. I kept looking till I found a Dr that offered better options. He put me on LDN – Low Dose Naltrexone. No objectionable side effects and my pain and inflammation have dropped dramatically in just 8 days of being on the drug. There are several web sites and blogs about LDN that you can research. I hope that you do and are willing to give it a try. It may change your life !
    Blessings
    Rory

  14. Hi
    name is Elyass. Get dignosis AS before one month ago. I am doctor also work in radiology departement in hospital in Sweden. I dont know what can i say now but i am really in shock now after i get this diagnosis.

  15. Victoria, you are beautiful and young. There’s hope for you. After almost 40 years with AS, I started out just like you, wondering how would I live in constant pain ?
    Well, today I’m in the best shape ever !
    I changed my diet and exercise program-
    No processed wheat…nothing in a box or can
    Eat anti inflammatory foods…look this up
    Stretch your body everyday to elongated spine and all body
    Do Aerobic exercises to get heart pumping

    Let us know how you do with this !

    Are you from Michigan ?
    I’m from Grand Rapids.
    Love
    Steve # 0801

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