Tuesday 22 May 2012

My Diagnosis experience with Ankylosing Spondylitis

HI everyone. I am 21 and an engineering student from India. I am a patient of Ankylosing spondylitis from 5 years. I was 16 when i was diagonised with AS , and definitely its not an age where you can accept that you have something that would pain every second of your life and is not curable.That was the time when i was around 250 miles away from my parents and family ,living alone preparing for the toughest entrance exam for best engineering college in india. So,obviously no one was there to tell me that "dont worry ,everything is gonna be ok ". It took almost 2 years to diagnose it.My pain started with mild backache .As i had a medical history of rheumatic fever also so i thought it is just a pain as my body was very weak. But slowly the pain started to increase.In mornings it was on its high and then as day passed it eases a little.My motion became restricted because of my body.But still i wasnt diagnosed.The first thing that came to every doctors mind was that its a muscular pain No one could make out what was the problem but the pain was increasing with every passing day.So doctors tried to completely suppress the pain and gave me heavy doses of painkillers for 6 months and i became normal for few months without any pain ..But ones i suffered with dehydration and was admitted in hospital.After that incident my body started to loose all its strength and again i started to feel that pain but now it was unbearable.Again same story,doctors thought its a muscle pain.I did physiotherapy sessions for almost 6 months. But story was same everyday I woke up with immense pain every morning then my friends use to pick me up from my bed and take me to hospital for physiotherapy sessions.After the sessions, pain was almost nil but then as the day passed and evening was coming closer that pain was taking over again.I thought of trying some one else, So next i went to a neurologist but still no results except more painkillers.One of the physician even told me that i have slip disc and i was wondering how the hell i am walking then. Someone told me to consult acupuncturist because at that time it was just a muscular pain. I went there and that guy filled me up with lots of needles. Waoooohh that experience was awesome,i was feeling like superman. Behind all this i could see my dreams getting shattered slowly.All i could see and feel was pain and pain and pain.I couldn't sit for long neither attend long classes nor walk to my classes.One of the brightest student and top scorer was missing classes everyday and scoring lowest in his lifetime.I was crying with pain and getting anxious everyday to know what is the problem. And surely a thought of committing suicide at the age of 17 wasn't a good idea. It was a feeling that only a patient of AS can understand.When you are in your teens you see teenagers playing around you,becoming sports champ,hopping around with all that energy in them and all you can do is see them and feeling pity on yourself. But then i got lucky and i met a young physiotherapist.She took my sessions for a month and after seeing my pathetic condition with no positive result.She tried her best to get it diagnosed.Finally,our struggle ended up when i met a German orthopedic.After reading my medical history he told me that their is a possibility of a disease Ankylosing spondylitis.I had a blood test named HLA-B27,it came positive and then a MRI test .. Finally i had the name of the disease and it was Ankylosing spondylitis.After almost 2 years of agony at least i knew what happened to me.I thought its an end now and i will get cured. That is what everyone things,you get diagnosed and doctor cures you.but i had a lot for me in treasure box.It was like you desperately want to end your agony and when you get a smile on your face ,you suddenly realise its just a beginning.....
Finally i had a reason for many questions.. 
"WHY I CANT RUN"  
"WHY MY BELOVED SLEEP HAS TURNED INTO NIGHTMARE"
"WHY I DO NOT HAVE MY PILLOWS AROUND ME" 
"WHY INSTEAD OF TASTY SNACKS I WAS HAVING PAIN KILLERS IN MY BREAKFAST"
"WHY MY FOOTBALL GIVES ME PAIN WITH EVERY KICK".


If you have any experience to share then you  welcomed to share it here...

5 comments:

  1. Hi, My name is Chetan Waghela. I am from Mumbai and suffering from AS past 7 years. I have completed M.Sc and m working on a project at IISER. My age is 24 now.
    I am lucky that I was diagnosed early! My mistake was, I did'nt believe I had AS. I read through articles on net and found exactly that the pain starts at SI joints and it made me more sure that I have AS.
    I love the positive attitude U have, because I have met a person with AS and he was very pessimistic and had done all wrong things.
    I want to share amazing results, I am having these days. I started Water aerobics 6 months ago slowly the pain reduced and my body showed signs of recovery. I have tried yoga and weight training also earlier but everytime there were some problems. Water Aerobics is amazing for AS, the reason is you run in deep water without any impact on back.
    http://www.youtube.com/watch?v=Acdm_VmYuSQ
    I was able to run after 2 months. I exercised 3 times a week. As my condition got better I started with weight training.
    I hired a professional trainer. I was lucky to get him. He himself had gone through accident a year ago on a bike, so he knew the precautions. I started slowly by increasing strength and correcting my posture. I had a hunch and protruding neck. I increased strength for a month by doing cardio and some low weight exercises. Meanwhile, I followed a proper diet he had given and take medications properly and also did water aerobics. After 1 and a half month, my neck and huch condition improved a lot ! I am ecstatic and feel amazing.
    Past 4 months I am regularly exercising doing Water aerobics 3 days a week and Strength training 3 days a week. I train 6 days a week. I eat proper food including chicken, eggs and shakes, and also take supplements of calcium and Vitamin B and E properly. Check My posture and walk frequently. Everything is going well and amazing.
    I am now thinking of doing next big thing of starting Capoeira.
    Hope to hear from You, as I liked your spirit and can contribute to AS research as you also are an educated person, If you have any information about research or any prospects, do let Me know. All the Best !

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    1. hi.. i was so nice to hear from you.. thanks for all that info. i will work on it.

      but first i have to serious. you know i am very lazy. i dont do exercise much.. but manage to stay healthy. u r lucky to have a good trainer.Evn i tried weight training but trainer didnt know about disease so it was just a wreck.Although swimming nd yoga wwere a beautiful experience.. Now i dnt do anything and no meds .. Without them i m working good.. Though i consume garlic daily morning it relieves inflammation on joints nd keeps body warm.. Try some ayurveda meds if u can coz they are harmless and very effective.. i use to have a ayurvedic painkiller "painill" it was as effective as allopathic nd much safer.. U hv inspired me for workout i l surely work on it.. i dnt like this weak body.. thanks ones again.. take care and stay flexible.. adios amigo...

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  2. I take etoricoxib 60 mg and Sulfasalazine 500 mg regularly. I never took TNF blocker injections.

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    1. i do not take ant meds.. but i do take etoricoxib 12omg ones in a month.. If pain goes way beyond limit then i take it .. Its really very effective..

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    2. For a genuine info on AS u can read books by dr. muhammad asim khan . He is a rheumotologist and also a patient of AS. I havent read that but have heard its good and helpful.
      I dont have any trainer here so its very difficuilt to get into a proper routine and diet.. I eat whatever i want.. whenever i want... and sleep how much i want.. and Sometimes pay for it..

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