It is a long time since I have posted (sept and nov19) when I was trying to get a diagnosis and had my first rheumatology appt. at that point they said pointed to PsA but couldn’t give a definitive diagnosis so no meds and go back in january. So I had an appt 13th January. Unfortunately whilst in the waiting room my neighbour called me to say my cat had been run over and didn’t survive. I spent the whole of my appointment sobbing and unable to fight for myself. Doctor said that he still couldnt give me a diagnosis. I was crying so much and so upset that I didn’t really question why not. He gave me a cortisone injection in my hip and said come back again in 2 months for a follow up. Then bang COVID and no appointment. Finally on 7th august the hospital called to say I will have a video appointment 13th august. The stupid hospital didn’t send the letter with instructions until the day of appointment so didn’t happen. I now have another video appointment on Monday. I have saved photos of me knee during lockdown which swelled to twice normal size (back down to ‘normal’ now) my skin in flaring so I have pics of that too to show.
I am so frustrated. Back in 2016 I was seen by another hospital for suspected RA due to pain and swelling and high inflammation markers. They said wasn’t RA and discharged but mentioned on the letter possible PsA. That’s 4 years ago - why am I still battling to get a diagnosis and treatment. I just don’t know what to do to get somewhere! Last time the rheumatologist gave me info on fibromyalgia. I really don’t think it is that. I have so many symptoms from PsA and not many of the fibro apart from the joint pain and occasional fatigue.
So I have pain definitely in the tendons/bursas in 1 shoulder, 1 wrist. They have been scanned and there is inflammation but no joint swelling. Restricted movement in both.
I had very physical swelling in 2 toes on one foot - the sausage look. Swelling went down after a couple of months but still have the pain and restricted movement.
Left knee, above the knee cap. Definitely had significant swelling (now gone down) but still swollen bursas.
Hips, right hand worse than left. He said there was swelling there last time. Gave me the injection and that definitely helped. It took a couple of weeks, but pain and movement deffo better for a couple of months.
Lower back and neck - very stiff a lot of the time!
I also have psoriasis, high cholesterol (even that I eat pretty well).
So after a long long post (as I am in despair) what would you recommend me to do during this video appointment which is a year from my first appointment with no diagnosis, no meds, increased pain and increased swelling?? Thanks all in advance x