Doctors dismissing me !!
Hi I’m new here, and have been through some major changes,4 yrs ago diagnosed with grade 3 breast cancer after my op and radiotherapy ect I was put on letrozol tablets and a androlic acid, to protect my bones. I had always suffered with my back but being busy housewife and mother and professional singer I put it down to strain, in the meanwhile after my operation I had fractured my femur bone in both legs not from falling but just walking . 8 X-rays didn’t show fractures so eventually after a hip fracture they gave me a MRI found fractures but also found lower fused spine by this time I was having so much pain in spine and joints could hardly walk the doctor thought I might have AS so after researching AS I asked doctor to have bloods taken to see if I had the gene, waited 1 week and told everything was satisfactory!! How??? So rang doctor she said that in her opinion I had AS but the hospital wouldn’t test me for the gene because of my age(75) and also to old for them to do anything about it ,so just keep taking pain medication, I’ve had liquid morphine morphine tablets and other medication but can’t be treated with AS medication because I don’t have diagnosis. I lost my husband 14 yrs ago and kept myself fit and healthy for my children but now all I see is my house is like a prison can hardly walk burning pain in spine and arms and leg joints are affected they have given me all the aids stair lifts ect but NO diagnosis so I am angry that they put the price of a blood test over me getting the right medication. And people wonder why older people feel like they are invisible.
Hi Izzy,
I'm truly sorry to hear about what you've been through, it's certainly been a difficult time for you with your health.
Many people with AS have trouble getting a diagnosis, and in turn aren't able to access treatment. Often it takes getting referred to a different specialist who perhaps understands more about the condition. I often see people online asking other's with AS if they can recommend a rheumatologist in their local area, perhaps this is something you could try for a second opinion?
Something your current doctor might not be aware of is that around 10% of people with AS don't test positive for the gene. That's why it's not the only criteria for being diagnosed with AS. There's a great explanation about that in the article below:
https://ankylosingspondylitis.net/risk-factors
It's understandable that you're feeling frustrated and ignored, I'm so sorry you haven't been given access to the help you clearly need. Chronic illness is difficult enough without being made to feel invisible.
I hope you can find it in yourself to keep pushing for the further assessment and treatment you need. Do you have supportive family or friends who you can talk to about this, or perhaps even help you by going along to medical appointments? I know I have found this helpful myself in the past when I needed to advocate for myself and was running out of steam.
Wishing you all the very best and please keep us posted as to how you get on. You will find a very supportive community here and people like yourself sharing helpful ideas and offering encouragement. I have always found this community to be so helpful in feeling less alone and connecting with others who understand.
Warm regards,
Anne-Marie (Patient Leader)
