I thought I’d check in with you all and give you a life update about my two latest appointments – dermatology and rheumatology. I’ve had both of these close together and have so much to tell you!
I had a really good dermatology appointment last Thursday! It was just a check-in with my specialist dermatologist (although I actually had a different doctor to last time) and it only lasted 5 minutes, but it was definitely a good appointment.
We spent the majority of the appointment talking – although not really about my skin because that hasn’t changed at all. She said she was glad I’m not taking the anti-histamines anymore, as they weren’t helping my skin and made me feel awful, and it’s not good to take medication if you don’t need it.
Even though I spent way longer on the train than I did at the hospital, it was definitely worth going, just to give them an update. The dermatologist said that if I get a definitive diagnosis and a treatment plan then I don’t have to go back!
My rheumatology appointment on Tuesday was amazing!! It was my first rheumatology appointment, so I didn’t know what to expect, but it went really well.
My GP had told my rheumatologist a little bit about my history, but he wanted me to tell him more, so we did that first. It was nice to talk to a doctor who had actually read my notes for a change! I told him all about my symptoms and a little bit about how much they affect me day-to-day.
He then did a physical exam to see how hypermobile I am. I’m not sure what he thought I was on the Beighton Score (he didn’t tell me), but my physio said I’m a 7/9. I’ll have to ask him next time I see him, as I’m intrigued as to whether they have the same opinion or not! He also did the usual heart and lungs checks with a stethoscope. He also did the weirdest test I’ve ever been through! I had to lie on my side and he pressed on my hip and then again slightly further back – it really hurt! I think it was to check the muscles around my hip joints, but I’m not sure. I’ll be asking him about that, too!
He says I definitely have HSD (Hypermobility Spectrum Disorder) and he also thinks I have hEDS (hypermobile Ehlers-Danlos Syndrome). I had to have some more bloods done to rule out other things like autoimmune diseases, which I had done on Wednesday, before he’ll give me a diagnosis of EDS (Ehlers-Danlos Syndrome). I’m so glad I finally have a diagnosis, though, even if it’s not a final one!
My new rheumatologist also told me to double my nortriptyline dose to 20mg a day, as there aren’t many side effects of that and he thinks it will help with my insomnia. I’ll have to wait a bit longer to see if that’s working, but I’m keeping my fingers crossed! He said I can change it to 30mg a day if I need to, but to start with 20mg a day for a while and see if that works.
I’m seeing him again after I’ve had my autonomic testing, as he wants to see the results of that and my bloods.
Life Update Conclusion
Overall, I’m really happy with how both my appointments went. Next up is my autonomic testing on the 13th to 14th of June! I’ll probably do another life update after that to let you know how it went, but for now, keep your eyes peeled for a post about making money with a chronic illness which is coming out on Tuesday!
Make sure you follow me on Instagram (@chronillicles) if you want to be kept up to date with my health. I won’t always be doing a life update like this dermatology and rheumatology appointments life update after every appointment, just the important or interesting ones.