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Hi, recently I have been diagnosed with AS & potentially psoriatic arthritis. I'm 25 & as you can imagine heartbroken.
Drs want to start me on biological treatments. After Naproxen brought on lesions which they deemed guttate psoriasis. Now here's my concerns and worries...
I'm from England so we do have a fantastic NHS system. However, I am in a bit of denial on my diagnosis and here's why..
I have suffered from no backpain or joint pain in the past, the only time I suffered from knee pain was after a fall from a cross trainer( don't ask.. I'm a nightmare). One day I lifted something way beyond my capabilities, & pulled my back. (Or so I thought). I waited 3 weeks before going to see a doctor. In which then I was given a nurse practitioner who told me it was a muscle tear.. I went on paractemol, ibuprofen. No relief. Back to the drs. Then I was on co-codimol, nope. Codeine, nope. Dr then said I was most likely immune to codeine based tablets. Naproxen helped.. Then I got the lesions. I'm also on pregablin to help w the sciatic nerve that's flared up from the back pain.
I spent the best part of 2 months of weekly visits to the doctor. Until finally a locum dr sent me to a rhuemy. At the time I was in pain, sleep was terrible as I could hardly move in bed, sitting up or even getting out of bed. I struggled terribly.
He explained my inflammatory markers were extremely high, also I had next to no iron in my system. Women are meant to have a level of 14.. I had level 3. My folic acid was also down. So I was given tablets to substitute. He then referred me to a dermo, who advised coming off Naproxen and finding another anti inflammatory. I stopped Naproxen and was given an MRI. Finally rhuemy gave me Extorcib (think that's how it's spelt). Since I began taking that, all my pain was gone. Literally vanished. I still take Pregablin and extorcib. Things have been going great, feel like me again.
I ended up seeing a specialist nurse as they sent a letter saying my symptoms were in keeping with spondylitis arthropathy. (But hang on? All my symptoms have gone? I feel fine.) the nurse tried to give me Hurima but couldn't actually tell me what I had just that it could be "AS or Psoriastic arthritis.. Or it's just a back injury. But we don't know as we haven't had your MRI results back."
So I put my heels down. "You can't give me medication that I might not need?!"
She then referred me back to a rhuemy and asked them to tell me what was happening as soon as I got my MRI results..
Yesterday I get a phone call that wiped me out completely. My spine showed inflammation, & that my markers were high (now no bloods have been taken since i was in real bad pain, so my markers could be low now..) he also said that I had snapped a piece of spine off..
*alarmbells & tears of course*
He couldn't give me a straight answer on if I would need to take biological meds for life. Or why all my symptoms were gone. He just said "hmm."
But he knew it wasn't a back injury & said that my anti-inflammatory was working, but I would need the biological medication too. Unless I want to wait and see how it all goes. (Hang on? You're the doctor. I don't understand. Now you're saying I have a choice not to take it? But you just said I'd need it?)
What I'm asking is; Has anyone else been through the mill when being 'diagnosed'? Is there a chance they have it wrong as all my symptoms have gone?
I snapped a piece of my spine, so ofcourse there's going to be inflammation, like someone would have inflammation if they broke their leg or arm?! I worked and continued my normal life, working with the pain. I didn't rest it. I wasn't given pain relief or anti inflammtories that were appropriate until December. (2-3 months after doing my back.)
I haven't been told about my HB-27 gene or had anymore blood tests since the first rhuemy appointment.
So could this all just be a back injury after all? Could they have it wrong? Like I said I had no pain previous, none. Until I lifted something heavy. & since being placed on Extorcib I've had no pain.
Now I have an autoimmune disease?
I'm looking for any advice as I don't know whether to get a second opinion or look into private health care. Maybe my denial is spurring me on.. As I did read somewhere that a lady was diagnosed, got referred to Baths rhuemy & they told her the MRI was useless, they did their own and she didn't have it at all!
Any kind of advice would be a major help. Many thanks!
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