Timelines?!

[nataliejane81]

I hope I'm not duplicating posts here!

I spotted in another post the marvellous idea of writing a timeline to take along to rheumatologists etc & help with getting an appropriate diagnosis/ giving them all of the information they need. What sort of thing would you include? I had thought I was officially diagnosed with HMS as I saw a spinal specialist & my GP has been fully supportive & accepting of the fact I have HMS however I never received a formal diagnostic letter, which Occupational Health seem to want...

I have an appointment at the local musculoskeletal clinic in June (ostensibly to do with a knee injurY but I'm hoping it's step 1 to getting HMS support) and am wondering if I should just put a timeline showing development of joint issues or include other potentially related problems (my history of regular fainting & bowel problems for example). Mayb I should do 2!! A comprehensive one & a joints only one

If you've done one what sort of things did you include?!

[gila]

I would maybe do a musculosceletal one and a 'other body systems' one-

and I would , 'just in case', also print out and take some reputable info about HMS like this one
http://www.dwp.gov.uk/publications/spec ... -syndrome/

so if they appear not to know anything about HMS, or look at you like "why do you bring in a list of non musculosceletal probs to a msc team, you weirdo ????" (which pity enough wouldnt surprise me at all )- you can say something like " my spinal specialist mentioned the possibility of my probs being hypermobility related- and this DWP info on Hypermobility syndrome seems to fit (you can then show them the fitting of the probs you have listed and probs that come with HMS)- do you think it could be this? are you the appropriate peops who can possibly dx this? "

oh re occy health- they should (sigh...) really take your various health probs into consideration- dx or not- dla does... maybe you could show them the list of probs and the DWP info too and explain that you are currently trying to get dx but that this is not that easy as this is not yet a very well known condition (proof of this is the mention of it being underdiagnosed in the DWP info)

good luck!!! fingers crossed the dwp info will not be necessary and the musculosceletal clinic knows all about HMS!
xxg
oh... and I would do the time line "backwards'- start with current probs/probs in the last few years- and try to keep it as short as poss - so do a "bullet point list" rather than 'full text/letter'

[nataliejane81]

Ooh that's fab, Gila, thank you for all that brilliant advice

I didn't even think of putting the timeline in reverse chronological order, though it seems obvious now you mention it!

My OT had heard of HMS & even knew it was connected to Marfans & EDS but because I couldn't remember the name of the spinal specialist (! Brain fog & it was 2 years ago) he questioned it... Daft how much of a battle it is isn't it!!

[Rosie]

Just a thought - you can aske for a copy of medical notes from the GP. This should include things like referrals and reports back from consultants. Thyey can charge you for copies, but I think you can ask to see them instead (ie at the surgery). There is a thread on here about this somewhere. This should also help with dates etc, I sometimes struggle to know what happened when, i have to date things by the kids e.g DD1 was at school when this happened, but DD2 was still at nursery.

Rosie

[nataliejane81]

Thanks Rosie

Yes I often think that I need to get that sort of info from my GP; I'm sure he'd be more than happy to give it to me. I just forget to ask because the issues I make the appointment for are the focus & I forget! Must write it down next time...

I work thinks out using my kids too, otherwise I don't have a clue!

[Spireite]

I keep a medical diary and do monthly and annual summaries by activity and by bodypart. One of the main benefits is a neat summary for future reference. With so much happening with so many body parts over so many years it does get difficult to remember exactly what and how much happened to each bodypart. The annual summary summarises this for posterity to me so I do recommend it to people with a lot of misbehaving bodyparts.