How long did it take for you to be diagnosed?
Let me know below how long it took between your symptoms starting and getting your diagnosis?
I feel very lucky that I was diagnosed within a year of my symptoms starting.
My diagnosis came out after I ate cake that came out of the oven very extremely hot. I should of waited for it to cool down but I didn't. I burnt my Trachea very severely that it affected my walking it was very difficult to walk. I was sent for a special test down my throat. The doctors thought I had Throat Cancer. But this was just a severely burnt Trachea. I couldn't eat solid food because it was too painful. And hot food was way out of the question. I could only tolerate pureed food. I was given Micostatin to take orally and taken with a dropper which was included. I had to take about 5 ml 4 times daily. I saw the doctor once a week and had CT scans every 3 months. Then when Trachea healed I was still in pain the pain was now muscular in my back. So the doctor sent me to see a Physiotherapist which I saw for 5 weeks. And in between seeing the doctor. The doctor said on my visit that I had Spondylitis the doctor shortened the word because it was hard to remember Ankylosing Spondyliti. Then the doctor made a referral for me to see a specialist I was given blood tests and scans and the specialist said that there were numerous conditions that they found so not only was I diagnosed with Ankylosing Spondylitis but also Diverticulitis and the specialist said why didn't you go to the hospital. The specialist was clearly upset with me for not going to the hospital about my burnt Trachea. The specialist prescribed Celebrex the Celebrex needed to be taken half an hour before food and if I didn't I would be suffering with heart burn and it would have a horrible affect on my Trachea and it hurt real bad. Soo I told the specialist about how I was feeling and how it affected my Trachea and the specialist asked me. Are you waiting half an hour before you eat anything? Oh I thought. I said no. And specialist said it's very important to read what it says on your your medicine the information written from your pharmacist is very important information about how you're meant to take your medication and it's not meant to be ignored. The specialist was furious with me. Then the Celebrex medicine was stopped because of the way it made me feel.
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Wow, that is an interesting route to a diagnosis.
To think it all started by eating cake that was still hot out of the oven.
I hope you are doing a bit better today and have since learned some valuable lessons.
My best, Doreen (Team Member)
10+ years
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We appreciate you sharing a bit of your challenging story.
So many in this community can relate to your diagnostic frustration.
How are things going today?
~Doreen (Team Member)Thanks for checking in! I am hanging on. I continue to have pain, especially in my right hip. I will be having a complete hip replacement in July which should help quite a bit.
The wonderful rheumatologist that I found unfortunately has passed and the clinic is searching for someone to replace him. The clinic is staffed by a very competent group of nurse practitioners and physician assistants who are able to keep me moving. There is also an infusion clinic onsite where I get treated bi-monthly. I am praying that they will find a new rheumatologist soon! (And that they are as compassionate as the doctor they are replacing)
7 years
,
Thanks for chiming in.
I wish it weren't, but that seems all too common in this community.
How are things going today?
~Doreen (Team Member)
Waiting - should be done in 6 weeks
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We'll be thinking of you.
Please keep us updated.
~Doreen (Team Member)
