What is the scariest symptom or complications of axSpa?
Getting an axSpa diagnosis and experiencing the symptoms can be truly frightening. In your opinion, what is the scariest symptom or complication of axSpa?
The times when limbs don’t want to move!!
The electricity coursing in the abdomen, perivaginal and rectum. It makes me feel like a freak
The gaslighting by rheumatologist after rheumatologist because without a diagnosis I don't have access to the support I need and will likely have a worse outcome. I guess they're going to wait to do my autopsy to figure it out.
I am so sorry you are going through this. Medical gaslighting is really a problem with this condition! I hope you can find some support soon. All the best, Kathy (Team member) I know how you feel. Example, a radiologist lied bold facely in his report. The problem is that if the cathode ray tube settings are wrong the imaging reading is wrong. Well the focus film distance was off and the object film distance was off. Yep he ruled out that screws from fusion were faulty. Everything was beautiful.It did not stop there. I was sent for the EMG. This doctor or tech refused to look at image. Next she blatantly conveyed the message that I was fine. The diagnosticians then placed me in recidivism. It's as if I have nothing else to do but concoct stories. I ask you, where is the justice for women?--30 years without any type of optimal living.
I have lived with arthritis all my life starting with JRA (I missed kindergarten because of arthritis) and was diagnosed with AS (HLA-B27) in my late 20s; I am 76 now. The years haven’t been kind, but I truly believe I am going through the roughest time right now. I am fiercely independent and a loner. People get on my nerves. I am not the tiniest bit social. I cannot bear the thought of assistive living or an in-home helper, but my cervical spine is compressed and causing horrible headaches. I can tolerate them but the compression has pinched the nerves to my left arm and hand. I am struggling to get around one handed. I used to get injections but am now on blood thinner. You can’t inject the spine when on blood thinner, or so they tell me.
I see an OT once a week and have consulted with specialists. They haven’t been able to offer anything that will help. The arm and hand just keep getting weaker.
So, unless these pinched nerves let up a little, my independence is in jeopardy. This crossroads is possibly one step too many.
Oh friend - what a journey you've had. I am sorry that things continue to worsen for you. I understand what you are going through. I'm having surgery soon to decompress the cervical spinal nerves causing pain and tingling in my left arm and hand. Doing things with one hand is terribly difficult. I keep dropping things and find my arm getting weaker and weaker as the months go on. Can they not offer you an RFA (radiofrequency ablation) where they burn the nerves? I'm having an extension of my cervical fusion to get those nerves untrapped and the discs from pushing on my spinal cord, though I am 20 years younger and still at an age they will take me to surgery. I send you strength to endure this crossroads. Give yourself the grace to move forward and choose the right path for you during such a difficult time. We are here to listen and support you. Thoughtfully, Rebecca (team member) 
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I just wanted to add my support.
I'm sorry it has been so challenging for you. My thoughts are with you for some much-needed relief.
My best, Doreen (Team Member)
