Diagnosed with AS for two years

Hi Gloria, you need two things - 1) to understand what is causing the pain (nerves obviously) - did you talk to an orthopedist? He/she may give you a shot which may reduce the pain. In that case you will go to the pain clinic for these shots... What did neurologist say? Secondly, you should see a rheumatologist who will put you on meds to slow down the process of AS progressing. It's not a neurologist's job. Neurologist may give you some meds which may reduce the pain. As these are reduced dosages of meds for epilepsy or psychological, I never agreed to try these. But in your case maybe the benefits will outweight possible side effects. As for the immediate relief? Try to sleep with a hot pillow. Or electric blanket. Keep yourself active (which is a part of your job anyway) - it's gets worse if you don't move. Yoga is said to be good - going to try it soon so not from personal experience. Change of food may help - reduce carbs (especially bread and potatoes). Reduce cabbage and tomatoes. To zero. Reduce oranges. Reduce meat, especially the red one. Try fish oil (helped me a bit). You should play with painkillers - everyone is different, so... Sorry that I can't help more. XO

Hi Gloria,

  i'm very sorry to hear about your pain and other issues.  AS is very ugly as it seems to have a very broad arsenal with which to attack a person.  People's symptoms seem to vary widely.  If I may, though, I'm very curious about the issues with your legs.  You say that they simply don't work very well.  Can you go a little more in detail about that?  Are you losing muscle control?  Did your MRI tell you anything specifically about why you are losing the muscle control?  

  I have spoken previously on this forum about my family history with chronic back problems.  I am the only one specifically diagnosed in the AS family of diseases.  But my brother and sister are so far worse off than I am.  My sister can only get around with a walker and my brother is effectively a paraplegic because he has very little control of them.  Consequently I am trying to get a handle on this particular effect of AS.  Is it simply a matter that structural changes in the spine leave the spinal nerves that control the legs pinched or is there something else going on here that impacts the muscle control of the legs.

  Any specific information about why the doctors believe you are losing control of the legs would be appreciated.

Thank you, Gloria for this information.  I certainly didn't mean to pry too deeply.  My symptoms are primarily the chronic pain and stiffness in the spine although I do have sciatic type issues going down my backside and my left leg along with numbness and strange sensory issues in my feet.  However, I have seen both siblings either requiring a walker to get around or become complete paraplegics and I know that there but for the grace of God go I.  I'm trying to fight this off for as long as I can.

I'm also someone who believes in cause and effect.  If you are losing sensation and muscle control in your legs then there must be a physical reason.  Doctors should be able to determine that reason and hopefully do something about it.  I'm beginning to see that that is not always the case but that is why I was inquiring about the cause in your case.  I watched my brother descend into paraplegia seemingly without fighting to get to the root cause and it drove me crazy at the time.  At any rate, please forgive me being nosey and I hope you are able to find some relief and comfort.

Best regards