Hi Everyone!
SO this coming Monday I’ve FINALLY got my second opinion rheumatology appointment. During my initial appointment I didn’t remember a lot of the answers to questions I was being asked. I also didn’t have some of the related diagnosis I now have – IBS springs to mind. I also gave some incorrect answers to questions as I was asked as I was seen during a ‘good’ period & had forgotten things like the difficulties I have sleeping when I’m in a lot of pain.
I really want to make sure I get the most out of this appointment, so I’ve compiled some notes, in bullet point form, to take with me in order to jog my memory! I thought it might be helpful for some of you to see how I’ve organised my notes.
I’ve compiled these from my symptoms, but also researched about Hypermobility/Ehlers-Danlos Syndrome to make sure I haven’t overlooked any symptoms I experience like I did in my original appointment. When you’ve a lot of symptoms going on at once, it’s tough to remember them all! This list has been compiled over a number of months – I could never just sit down & write it all in one go!
Rheumatology Appointment
History
- Family history – Sister diagnosed with EDS, Reynards & Scoliosis. Whole of Father’s side of the family symptomatic
- Growing pains & high energy levels as a child
- Migraine
- Allergies, including Asthma, Eczema & Hayfever
- PMS
- PTSD
- Lichen Sclerosis
Joints
- Chronic joint pain (widespread & localised)
- Hip & jaw subluxation
- TMJ dysfunction
- Insides catching on rib
- Clicky joints & stiffness
- Shoulder ‘injury’ & subsequent sprain(?) of one of the trapezius muscles, though possibly a sublaxation
Digestive
- IBS, including bloating
- Toilet issues – a change in sensation, not feeling normal ‘need to poo’ but experiencing pain & tingling of my bottom. When doing a wee, experiencing a feeling of not being connected to my body & the sensation of urination
Skin & Sensation
- Bruise easily
- Low platelet count
- Pins & needles & numbness
- Cold extremities
- Feeling of cold rushing down the inside of my lower legs on standing
Stamina
- Fatigue
- Paralysis of face (& body) during some periods of fatigue
- Difficulty sleeping
- Clumsy, difficulties with proprioception & coordination
- Poor core stability
- Brain fog
- Concentration difficulties
- Dizziness
- Quick & emphasised heart beat
- Sudden intense sweating
I’m going to take this list, along with my repeat prescription. I find this helps medical professionals as they can see spellings of drug names & doses.
I really hope this was helpful! Have you any tips for preparing for medical appointment?
This is so helpful and I'm sure it will be warmly welcomed by people about to have an appointment. I always dread appointments because I can never remember things well enough when I'm on the spot so I always write things down or take a family member in with me who can 'back me up' if need be. I hope today is being kind to you lovely!
Thank you Hayley! It's so tough to remember everything, especially when you're feeling really ill at the time! It's great that Drs can see how much you struggle when you're really ill, but it doesn't help when you can't give them the information they want & need! I take someone along when I can too, it's good for Drs to hear things from the view of someone seeing you struggling too. Xx
Good luck with your appointment. I think it's definitely a good idea to take notes like this with you – I've done similar in the past and found that it helps when you are asked lots of questions on the spot.
Rachel x Strawberry Sundaes
Thanks Rachel! I wouldn't've remembered so many pieces of information without it! I had to make notes of questions too – glad I did! Xx
Great post. I always have to take notes and lists with me, although I forgot my list a few times which didnt help. I also go through things with a family member before & take them with me so they can help.
Beth x
Mermaid in Disguise
Thanks Beth! If I've someone who's able, I'll take them along with me – for moral support if nothing else! Xx