Getting The Most From Your Appointment - Preparation

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?

Tania Xx