AS - doctors not wises - disasterous pain - dark life

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Hi sufferers ;

AS could be very different throught patients ; it can present in chest pain like a sustaind heart attack !!

My mandibular hurt me because of chest hard pain like a heart attack , no medication .

my CRP is normal , in 30% situation CRP could be normal , like mine .

There is no joint in whole the body can be away of pain .

Please tell me your stories about sharp chest pain , hard living , chronic fatique , doctors don't understand your thinks just belive that 1+1=2 ! , not classic AS situations .

HELP me my brothers in humanity !

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  • Posted

    I often have chest pains that radiate around from my back to my chest...One word of warning...chest pain can be deceiving it is not always coming from your back but can be the "real thing". 2 years ago I had bad experience...I thought the pain was just another attack from my damaged vertebrae...but I checked my BP and found it was 177/100

    and the pain was worsening....So I waited until my daughter came home from school and checked it again....200/100...so off we went to the local hospital and they put me on a monitor and then I heard the doctor saying enfarc...enfarc...which I know means a problem with the heart....The monitor was pinging and there were lots of nurses rushing around...and my BP went to 220/120...I had a heart attack. Thank goodness I went to hospital when I did...otherwise I would not be here typing this....I was lucky. So now I know to be careful with chest pain..

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    • Posted

      Thanks Gloria ;

      My blood pressure sometimes raise to 16/10 and the clolestrol is quite hight , in the middle of an incredable chest pain my ECG is normal and stress test is normal and CRP is normal!!

      so doctors tell me that my heart is normal but they cannot say that it is AS or inflammatory chest wall ! because of normal CRP & ESR .

      My chest pain makes my life hard to live , it is continuos , when i swallow i feel that my thoracic vertebrae pulling inside to my esophagus!! with a lot of pain .

      Our symptoms can be very different , i suffer with my doctors who belive just in 1+1=2 , thus i am a new graduated general doctor , and my medical information is up to date ! .

      It is complicated

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    • Posted

      Have you had an MRI ?  If so what were the results..? Can I ask your age please...Your BP is a little high...are you taking medicine for hypertension ? If not, I think you should.  Your description sounds like it is related to spinal problems. Severe pain will elevate your BP anyway...but I think your heart is OK from what you say. Do you get pain after eating ? Write down all your symptoms and take that to the Doctor next time you go....so you don't forget anything. Make sure he/she answers all your questions. Rest is important...try to get some and we will talk again later...Hugs...Gloria

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    • Posted

      MRI was nmal with non secifuc changes in SI joints , i think that it is the first signs of AS .

      Today i have seen a doctor because of hard chest pain , my bp was 10/7 !! , and ECG was normal .

      i tok 2 pills of cetamol and 1 of lexotan .

      a small change i have felt .

      Tomorrow i will visit my rheumy and explain what i am in .

      Regards

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  • Posted

    Gloria,

    ?  You nailed the problem exactly.  I have often said that some day this chest pain that I just assume is coming from the skeletal system is going to be something else.  But its not just the chest pain.  The lower back pain often gives a dull ache in the kidney area or even all the way through to the groin area in the front.  I've had real diverticulitis before as well as AS induced pain and it is hard to tell them apart.  I've often asked whether the constant ache and muscle spasm pain in the low/mid back area is a kidney problem.  Of course asking that question too many times gets you that dreaded hypochondriac label.  But someday that pain will be something besides AS and then............

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    • Posted

      Yes it may will be something real !

      But who know that it is not at present time?! , doctors couldn't find out the reason behind my chest pain , i tell my self IT is just inflamation in my chest wall , but when it become very hard and sustained and deep i said it is from heart because chest wall pain don't cause a feel in UNREST and unknown terrible senstions in chest .

      When the life becomes a burden !!

      sorry a bout my pessimistic analyse and thinking .

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    • Posted

      Can we just imagine for a moment what the body is ...it's a mass of nerves in a system of skeletal framing...if one small area of this framing is misaligned or damaged...it will affect many nerves  which run throughout our bodies..and in turn will affect muscles tendons...and all the other bits and bobs we all have. Imagine a computer without it's outside body...a mass of wires...when those wires are routed wrongly...the computer crashes. In Dr. Haidars case none of the doctors he has seen are competent "computer experts'...but they go by what they DO know...and regarding AS that's precious little. They can only guess....and that's the dangerous part.

      I have experienced what Dr. Haidar has...many times...but that one time was enough to put the wind up me..I was the heart. However, I did have other symptoms...e.g. BP elevated to the max....blue lips etc. If those other symptoms are not present and if I were the doctor in charge I'd go for muscular/skeletal problems. Their diagnoses are by elimination....that's the hardest part of all. Not enough is known...we are the unwilling pioneers of this disease....where does that leave us....frustrated to say the least.

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    • Posted

      Gloria you described what i feel inside , that is the idea .

      But i think in deep chest pain accompained whith AS we should think in rheumatic heart , how can i tell doctor to think in it , rheumtic diseases are very awful because there isnt any classic sign .. every thing is diffirent!

      maybe you heart is inflamed and weaking but not clear in ECHO or ECG /like angina/ .

      Rheumatic diseases need experts not classic doctors !

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    • Posted

      I have a very enlarged heart...50% larger than it should be...so I understand my problem on top of AS....I think you mentioned that you had a stress test on your heart....and that it seemed normal. Unfortunately I don't have access to specialists here in Bali...only a neurologist who knows little about AS. So I trudge on with my own knowledge and what I can research for myself. Maybe you could do the same...and keep loking for the right specialist to come along with the correct answers. Wish you lots of luck...G

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  • Posted

    MRI was nmal with non secifuc changes in SI joints , i think that it is the first signs of AS .

    Today i have seen a doctor because of hard chest pain , my bp was 10/7 !! , and ECG was normal .

    i tok 2 pills of cetamol and 1 of lexotan .

    a small change i have felt .

    Tomorrow i will visit my rheumy and explain what i am in .

    Regards

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  • Posted

    Absolutely! Chest wall pain is very common for me. My Doc absolutely believed me and has given me cortisone shots in between my ribs and directly into the chest. Mine however doesn't feel like a heart attack. It's generally localized to one small area that feels more like I'm being stabbed. The shot hurts to touch it. Breathing our any significant strain can REALLY hurt.

    You're not wrong about any area getting immune from pain. I have ribs pain on my sides, knees, ankles, fingers, shoulders, neck, back, buttock and legs. Not to mention eyes and jaw. Yay me!

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  • Posted

    I find it interesting, Gloria when you say that you have your heart is enlarged 50%.  I have been diagnosed within the past 3 years with an enlarged aortic root which then leads to regurgitation of the aortic valve.  Essentially the root which is that area where the aorta which exits at the top of the heart is enlarged and stretched out which does not allow the aortic valve to close completely.  I was told that my aortic root measures 4.6 cm in diameter which under normal circumstances would be cause for concern.  It is approaching a range where surgery could be considered.  However........ the cardiologist told me something recently that caught my interest.  He said that my heart in general is unusually large.  Consequently, the size of the root, while large, is not as outsized when you consider the overall size of the heart. So I have to ask the question as to whether this is common.  I know that AS tends to attack connective tissue in the heart which tends to lead to aneurysms and such but I had never heard enlarged hearts as an issue with AS.  Has anyone heard of this? 

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    • Posted

      AS definately affects the heart and other organs too. My problem was caused by having hypertension for so long and not taking care of my own health...everybody elses...but not my own. Nothing can be done about it now.....I just have to stay BIG HEARTED..love you all. G
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  • Posted

    I was diagnosed with AS a few years back..I am 42 yr old male, that started getting pain in my back, knees, and hips when I was only 7 years old...My Dr. said it was normal bone growth pain and I needed to toughen up...So I spent my entire childhood with my own parents not believeing in my pain, said it was all in my head...Pain was so bad as a child I couldn't even sleep...Turn the clock to today...Every day is excruciating pain...The first 3 or 4 hours I can barely stand at all, and walking is now a shuffling back and forth, with my entire body rigid as a stone....The pain in every joint is unbearable...I take no medicine because I have come to realize we are nothing more than guinea pigs to the medical profession...Most of the drugs they offer us are absolutely poison....And no one is rushing to find us a cure, but instead they are looking for a magic stop pill, that we would be required to take for the rest of our lives...IT is a joke to them...As for the pain, I spend nearly all day in this computer chair or in my bed laying down...It is the only places I have left that are comfy...This disease is a nightmare on wheels...My hands hurt, fingers, shoulders, neck, lower and mid back, hips and knees, ankles and toes...Last MRI revealed at least 2 completely blown discs, and now I am sure there are at least 4 blown discs...I have sciatica, scoliosis, and ptsd for a nice icing on the paincake....I know what you are all going through because every day of my life is a full blown "FLAIR"...Flair, what a soft word to describe IMMENSE pain....It truly does suck to be totally forgotten about....And I have to listen to another person say, Stay postitive, or Take a walk and get your mind off it, I will implode....

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