Just starting down this road
My rheumatologist said he thinks I have AS and Lupus. I was hlab27 negative so I don’t k ow what he is going to say when I see him this month. Looking back at all the issues for all the decades, this makes sense.
Last July I broke my furthest joint on my middle finger by just simply popping my knuckles. It was the day before my 48th birthday. After this I went to the doctor and established a PCP. I didn’t have one previously because I’ve spent decades being dismissed by doctors and offered antidepressants. I really don’t have much faith in this system at all. Anyway, I chose a NP because I figured she wouldn’t ignore my pains. She ordered blood work and we went from there.
Since August of 2021 I’ve found I have bilateral sensorineural hearing loss, anemia, and now seeing a rheumatologist, AS, Lupus, and osteoarthritis in my L5s1. Some things we have t talked about that I’ve only learned about from this site, like the problems with my eyes(redness in the white part where my lower eyelids cover, fast horizontal movements of my eyes sometimes- happened last night while I was knitting but generally it happens when I’m asleep and wakes me up dizzy and nauseous), dizziness, new tinnitus and decreased hearing even with HAs in, etc….
I feel like I’m falling apart and even though I’ve had back and joint and skin pain for a long time (was diagnosed with fibromyalgia when I was 35), things have progressed and it’s been scary! In looking back I think my mom had many of the same issues I have but we didn’t know what it was. She ended up with early onset Alzheimer’s and died from a stroke at 64. Nothing she experienced was ever treated or looked at as anything autoimmune. It’s just scary to think she could have died from AI complications and I have been blown off by doctors all these years.
I recently did a stint on steroids and antibiotics for what the telehealth doctor said was a chronic sinus infection- all without looking at me or any testing whatsoever- but while on the steroids, I felt much better. I am off them now and feeling worse than ever- probably in conjunction with having finally had relief and now back to the pains, along with the knowing it.
I have many well meaning family members who just tell me to exercise and lose weight and I’ll feel better. In fact that’s what the Rheumatologist said in my records (I have the app to see the notes and results) and that he didn’t suspect anything else will be done. I’m on my own in this.
- just checking in to see how you are currently. As AS progresses, it can really be terrifying.I empathize with the challenges you're facing. Since Feb 2023, you've seen your rheumatologist - how did your appt go? Did you get any answers you were looking for? Have you been on any treatment for AxSpA/AS since? Hoping you've had a chance to read some articles and gain knowledge about this disease. It really is important when having to advocate for yourself. Wishing you well. Warmly ~ Rebecca (community moderator) since I saw the rheumatologist in February of 2022, I had other blood work done and ended up having a hysterectomy last July. After more blood work months after that, my inflammatory markers were still up as well as the anti-ccp being positive. I haven’t seen him since 2022 and some of my health issues resolved post surgery. Others are worse. I’m planning to wait to see him again in the future and see where things go from there. Thanks for signing on and updating us as to your health status. Hoping you hear nothing but good news. Wishing you well on this journey toward better health. Warmly ~ Rebecca (community moderator)
you are not alone. I too have been diagnosed with AS at the age of 29 after having symptoms since I was 24. I tested negative for HLA. My eyes constantly turning up with episcleritis was the deciding factor for my rheumatologist. I was also diagnosed with fibromyalgia at 35 after a bout of pneumonia. Lastly, I tested positive for Hashimotos Thyroiditis at 38. I feel like it's one thing after another honestly. I also get nystagmus with my eyes. In fact my eyes,neck, si joints and feet seem to be affected the most. I'm now 41 and have a 1 year old son. I dont know what my future holds or how these illnesses will continue but I am determined to enjoy who I have, while I can. Sending positive vibes. 
Hi Bubby,
Thanks for sharing all this. I am sorry you are struggling at the moment. It can be tough to make progress on a diagnosis and then get the right treatment.
I have both AxSpa and Fibromyalgia, and I am HLA-B27 negative as well, so we have few things in common!
I agree with you, there is a lot of interesting information on this site. It has certainly be a great support for me since I joined.
Have you got a rheumatologist with knowledge and experience in working with patients with As/AxSpa?
You know you can find support here if you need.
Take care,
Julie.I hope my rheumatologist is knowledgeable. When I went in I was very surprised he even suggested AS since I also had a positive anti-ccp test. My husband went with me to just help me remember everything I had complaints about. I’ve been keeping notes on my phone for months along with pictures in case things were feeling good by the time I saw him. For me symptoms have been building to worse and worse in these last 7 months with no real reprieve like I’d had in the past. I’ve never had this long of a flare up before.
