A busy, busy week, and some more answers!

I’ve had a crazily busy week this past week with 3 different appointments. On Monday I had to see my GP. I had rang him up 3 weeks ago [it takes 3 weeks to get an appointment with my GP]… I rang him when I was in the middle of a flare, and I was hoping that he would be able to help me out with some pred. However, he was incredibly rude and said that he was unwilling to do anything for me as I have a consultant. He also said that I was going to become disabled because I have an autoimmue disease… I was completely shocked, not only has this doctor just met me 2 minutes ago, and clearly had no idea how to treat my condition, he automatically assumed that I will become disabled despite not being a specialist and then he was unprofessional enough to tell me that I will, not that I might, but that I will become disabled. When he saw the look on my face he added that I’ll only become disabled if my condition doesn’t magically disappear… Anyone with an autoimmune disease will know that they hardly ever disappear, although we know that remissions can happen. My GP, although being brusk and rude, did send an urgent appointment request through to my Rheumy about my joints in the hopes that I could see her earlier than March. And he gave me quite a lot of Naproxen and paracetamol to tide me over the time till I got to see my rheumatologist, and he made sure they were on my repeats. I also found out that my Rheumatologist has diagnosed me with “Autoimmune disease (doesn’t quite fit criteria for Lupus)” so it looks as if she is thinking along the lupus route for my diagnosis… I’m not too sure how I feel about that.

My second appointment was on Wednesday and was with a physiotherapist. We discovered that I don’t have bursitis but I have inflammation of my piriformis muscle. It’s unclear whether I’ve ever had bursitis and if all my symptoms were a result of my piriformis, or whether the intramuscular steroid injection I had back in November has helped. Actually this past week I have been feeling really good, I have had about an hour and a it of morning stiffness but I actually feel quite good so maybe that steroid injection has helped. The physio asked me what I wanted her to do so I have asked for a load of stretches that will hopefully help with all my stiffness, and I am happy with that outcome… She said she will leave her appointment schedule free for me for 8 weeks, meaning that any time in the next 8 weeks that I feel I need an appointment I can ring and she will see me, or if I don’t need to see her then I don’t need to ring which works fine for me.

On Wednesday my Rheumatologist’s office phoned me saying they had got the appointment letter from my GP [that I had seen on Monday] and they asked me to come in to see them on Friday [AKA today]… Talk about efficiency right?! And that leads on to today and today’s Rheumy appointment. My appointment was at 11.30, and I was actually feeling pretty good, which is good but then when you are seeing a Rheumy for a flare which has now passed, it’s not the best timing. I got to see a junior doctor first as my actually rheumatologist is on holiday till January. He did an extremely thorough examination including an examination of my chest. He said that my joints looked good, which I already knew, and I explained that when I had phoned my GP 3 weeks ago, I was flaring. He did find a little bit of fluid in my ankle which surprised me and he found that my heel pain was actually caused by achilles tendonitis. He said that he thought that I might benefit from a steroid injection in my ankle but he wanted the registrar to see be first. I had to sit back out in the waiting room for about 40 minutes, as the registrar was held up on a ward but when I finally did see her it was a really good and informative appointment. She greeted my mum and I and asked my how my SLE (Systemic Lupus Erythematosus, AKA Lupus) at which point my mum freaked out because we both are well aware of what lupus can do to a person, but when we explained that SLE can affect each person differently, Mum seemed to calm down a bit. I explained for a second time that I was mid-flare 3 weeks ago but I was doing very well now except from heel pain. She agreed that I have a little bit of fluid in my ankle but not that much, and I do achilles tendonitis but because I have flat feet she wasn’t sure whether my achilles tendonitis is a mechanical problem or an inflammatory problem… so she has decided to hold off on the steroid injection for now, and she has referred me to podiatry so they can give me more insoles… However, I have already been waring insoles for years so I am not entirely convinced that this tendonitis is mechanical, especially because it came on at the same time my flare started. I am hoping, with crossed fingers, that it is mechanical as we will be able to sort it out easier.

We also discussed my diagnosis, and we were trying to identify exactly what might be going on. She explained that arthritis is a spectrum with a lot of symptoms that overlap into more than one condition but that they try and categorise symptoms into one condition, when perhaps they shouldn’t. She said to me that I don’t quite fit the criteria for lupus, which I already knew from Monday, but that my achilles tendonitis, if it is inflammatory, actually points to Psoriatic Arthritis, and as I already have a family member with Psoriatic arthritis this makes Psoriatic Arthritis a more likely diagnosis… But then the joint distribution of the joints affected in my hands suggest Rheumatoid arthritis but my Rheuamtoid factor and anti-CCP are negative so it’s more likely that I have sero-negative rheumatoid arthritis… So in one appointment I was told that my autoimmune condition has characteristics of Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis, and when you throw in Raynauds [another autoimmune condition I was diagnosed with in November] that can point to Lupus and Rheumatoid Arthritis, which means that I might have a combination of the two… AKA Mixed Connective Tissue disease… So that is a fourth Autoimmune disease that was discussed… Basically we don’t now whats going on, but we do know that I have something autoimmune going on, and we do know that the DMARD I am on, Hydroxycholorquine [Plaquenil], can treat Rheumatoid Arthritis, Lupus and Mixed connective tissue disease so it isn’t too important that we know what the condition is, as long as we can treat it.

I also got my ESR and CRP retested… my bloods last month showed my ESR to be 7 which is well within normal range, however it has increased from 2 which is where it was in May therefore suggesting that I do have a little bit more active inflammation but not an awful lot as some people end up with massively high, but this is subjective to each individual so it’s hard to compare peoples results. I also got baseline x-rays on my hands, feet and ankles which totalled 9 x-rays although I ended up having to have 10 because one didn’t turn out well, but that should do me for a year or so… Overall I have had a really busy week, and I’m really happy with how my rheumatology appointment went, even if it did take 2 hours [from going in till finishing with the x-rays].


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