orthapaedics at west middlesex hospital

[Fiona-Jane]

my appointment went well, and although the hospital messed up the appointments i still got to see prof pope, briefly! i was supposed to get a 45 min appointment, but i was booked in for 11am, the exact time prof pope was supposed to go into an important meeting! . he was lovely, and told them he was going to be late and gave me a quick examine while he kept apologising for the mix up! he's gonna book me in for another appointment soon.

he did the beignton test thingy (i got 7/9, which i already knew ), looked at how much my feet flatten and ankles roll etc and qizzed me about my family history of bendyness. he managed to get all this done in less than 10 mins! wow! . he even gave me homework! lol! i have to write down my family history on a little chart, briefly describing any bendy traits or other health problems, and write a list of questions for him to answer. but all in all, even though the appointment was very rushed he was very helpful and gave me the temporary diagnosis of BJHS, which he will review once he's examined me fully. the examination must be pretty thorough if its gonna take 45 mins.... especially considering how much he got through in 10 mins!!!

so i'm really looking forward to the next appointment! and he had the most amazing hair!! it was huuge! it was like his hair had a mind of its own! very cool!

i also have my orthopedic appointment on wed at 11am, for my MRI. i'm hoping that goes well too!

fi xx

[Fiona-Jane]

another update for anyone out there that actually reads my waffle!!

didnt have the mri, they advised the surgeon that i'd need to have dye injected into my joints for the scan to show what he wanted to see, and as it would involve injecting so many joints they said it was 'highly inadvisable'! thankfully!

but prof pope wants me to go for a bone density scan. so no doubt that will be my next trip to the hosiptal. im starting to think about pitching a tent in outpatient clinic 3 as i'm always there!!!!

oh, and apparently i also have mild blue sclerae. maybe thats why small children stare at me....


and i managed to read the letter the prof sent to my surgeon and he wrote that i have one of the benign joint hypermobility syndromes, and the gist of the letter suggested that he'd try to find out which one.

so, im finally getting somewhere with this diagnosis! hehehe!!




fi xx

[Rosie]

Hi Fi

maybe thats why small children stare at me....

might that be because you walk around on your hands?



Rosie

[Sue New]

might that be because you walk around on your hands?

very funny Rosie!!

Seriously Fi, I am gald that things are moving in the right direction even though you didn't manage to have the MRI's done today. Incidentally, there is technique called MRA (magnetic resonance angiogram) where they don't need to inject the dye. I had an MRA done on my neck as I am allergic to intravenous iodine dye (went into anaphylactic shock last time I had this administered). I wonder if this may be an alternative way for the surgeon to get the info he needs?

Good luck with the Bone Density scan. I have had a couple of those done and they are pretty painless and quick.

I know what you mean about pitching a tent at the hospital. That's how I feel. It has got to the point were the Nurses and Outpatients receptionists always say hello to me as they recognise me as a "frequent flyer" as it were. There are not many weeks that go by that I am not at the hospital at least once (sometimes I am there 3 times a week).

You are very lucky to have Prof Pope at your local hospital . I grew up in Middlesex and if I still lived at home I would probably have ended up at the West Mid too. Makes me wish I didn't move out sometimes . I hope that the prof is able to work out which syndrome you have.

Take care,

Sue.

[antimatter]

I am not sure how relevant this is or if it is old news over there, but I noticed on a news site that Health Canada is apparently now worried about gadolinium-containing contrast agents for MRI's in connection with some type of rare but possibly fatal skin disease. Here is a link to one of the stories in case anyone is interested http://ca.news.yahoo.com/s/capress/070313/health/health_health_mri_warning

The effect seems to have only been observed in patients with serious kidney disease so far.

...antimatter

[Fiona-Jane]

hiya!
a little update-

i got the results of my bone density scan and im normal! yay!!



prof pope made me worry last time i saw him as he said i could have EDS crossed with OI as im short with blue sclera and ive broken a few bones..... but no!! hooray!


and the prof wants me in his research program (mainly because i pushed him into giving me a proper diagnosis- he was just gonna leave me hanging but no! bossy, stubborn fi let him know what she wanted!! hehehe!). so although he said i have EDS i odnt know what type yet, although he said it was most probably just the hypermobile type. - need my biopsy which i have to wait for. but thats ok!

and he's gonna have a word with my gp about some physio, although this may not materialise as my gp's practise is sooo disorganised! so i'm winding myself up ready for my next attack- referral to a rhumatologist (as prof pope cant treat/manage me- he just diagnoses) and physio!

if i knew demanding stuff (with a smile on your face! ) would be this fruitful i would have done it years ago!! hehehe!

fi xx

[nonyanomemory]

Hi fi,

Brilliant news on the bone scan I bet you are chuffed. I am interested that with your specialist you are to go for the biopsy, I am also one of the very short ones etc. but I am seen in London (or not and that is another story) where I believe they are not so keen on the biopsy side of things. Good luck and thanks for the update.

[hannah]

Good to hear that thats one problem ruled out Fi - And I like your 'insiting' style - Assertiveness rules OK
I hope you get somewhere with physio, referals etc.

Hannah