The (not so old) Crocks Cafe -Part 2

mary-op

Hello all:j

singlesue -hope you managed to get some sleep last night

sh1305 - that is a weird time for any kind of appointment ! Think the latest I've ever had one has been 4pm

Had a good nights sleep last night but oh how I ached when I got up............and have gone on aching since then. Still, not to let it beat me I got my water colours out and painted a little sign for fosterdaughters OH's shed.............kept my mind on other things and I was really satisfied how it turned out.
If I can keep on doing something fairly ''creative'' (for want of a better word) at least it''ll keep me relatively sane I think........:)

Hope you're having a good day:)

Indie_Kid

mary-op wrote: »

sh1305 - that is a weird time for any kind of appointment ! Think the latest I've ever had one has been 4pm

I thought it was a weird time too. At least that means I can go to my group (there's a group running for visually impaired people that I attend) and have some dinner before I go.

sunnyone

We have state of the art scanners here and they arnt owned by the NHS but private companies and they offer scans at times to suit people and late nights are nearly always available for people that work, my husbands scan a couple of years ago was at 8pm because he was taking a half day by it was 6 hours drive back.

Indie_Kid

Similar has happened before - given an appointment within weeks of being referred and it being in the evening. At least that means no getting up early.

SingleSue

Oh great....yesterday middle son's hip clicked out and today, youngest son's did too!

Middle son was able to get it to go back without pain, youngest spent most of the day at school in pain but didn't tell anyone and no-one thought to ask why he was in tears and limping badly.

Also took eldest son up to the doctors today to ask about POTS...complete waste of time to be honest, he did the routine obs (all seated) and said no, he didn't have it. Reading all the gumph, doing a routine exam is a waste of time to discount POTS, it needs to be a tilt table test and 24 hour BP and heart rate monitoring before it can be discounted/diagnosed.

Mind you, his heart murmur is back...it had resolved itself the last time it was checked about 6-8 months ago but the doctor could hear it as clear as day today, my mum was not surprised as eldest had been complaining of extreme tiredness again, so she thought it might be back. He now has to go up for an ECG on Wednesday and depending on those results, could need to be referred back to the cardiologist for another echo as they were supposed to be keeping an eye on his aortic thingymigiggy.

Indie_Kid

SingleSue wrote: »

Middle son was able to get it to go back without pain, youngest spent most of the day at school in pain but didn't tell anyone and no-one thought to ask why he was in tears and limping badly.

Is youngest able to tell anyone? or will he only say something if asked?

I am still not feeling too better. I'm fine if I don't eat - which for obvious reasons, isn't practical. I was hoping not to start the year as I left it last year - diagnoses, being pulled around by doctors, etc.:(

mary-op

Singlesue - you have got your hands full by the sound of it. Good luck:)

Well bone scan that was due for tomorrow now been cancelled as the technicians off sick ! Been re-set for next Wednesday. I stressed I wanted results to be with consultant by the time I see him on 15th so here's hoping.

Physio appt. is next Thursday...........first one came through this morning so at least that''s starting so pleased about that.

Least I now have a free day to do something else...........not sure what at the minute but I do have some ''crafty'' bits I want to do that'll occupy me for a while. Don't notice the pain so much if I'm doing something like that.
Had a bit of a restless night tossing and turning -didn't do my back a lot of good.........rolled over to the right and ouch !!:eek: then back to laying on my back till I end up on my left side........ouch !:eek:
Hopefully tonight will be better...........:)

Hope you're all ok:)

SingleSue

sh1305 wrote: »

Is youngest able to tell anyone? or will he only say something if asked?

I am still not feeling too better. I'm fine if I don't eat - which for obvious reasons, isn't practical. I was hoping not to start the year as I left it last year - diagnoses, being pulled around by doctors, etc.:(

He doesn't like drawing attention to himself so will only let on there is a problem if a question is posed in a certain way. If someone was to ask him "Are you ok?", he would just say yes. If someone was to say "You are having some difficulty, let me help", he tends to agree and opens up a little.

He can be a frustrating little begger at times!

But it is worrying, they are both following their brother's route but even quicker in youngest's case..but then, he has had an HMS diagnosis since toddler hood (before HMS and EDS were seen as one and the same).

sunnyone

SingleSue wrote: »

Oh great....yesterday middle son's hip clicked out and today, youngest son's did too!

Middle son was able to get it to go back without pain, youngest spent most of the day at school in pain but didn't tell anyone and no-one thought to ask why he was in tears and limping badly.

Also took eldest son up to the doctors today to ask about POTS...complete waste of time to be honest, he did the routine obs (all seated) and said no, he didn't have it. Reading all the gumph, doing a routine exam is a waste of time to discount POTS, it needs to be a tilt table test and 24 hour BP and heart rate monitoring before it can be discounted/diagnosed.

Mind you, his heart murmur is back...it had resolved itself the last time it was checked about 6-8 months ago but the doctor could hear it as clear as day today, my mum was not surprised as eldest had been complaining of extreme tiredness again, so she thought it might be back. He now has to go up for an ECG on Wednesday and depending on those results, could need to be referred back to the cardiologist for another echo as they were supposed to be keeping an eye on his aortic thingymigiggy.

Their hips became totally dislocated? :eek:

Mine do but Im a raretity due to my damaged pelvis, the muscles and shape of the pelvis make it very hard to totally dislocate a femur if your pelvis is normal and if they totally dislocated them they need to be seen urgently by a specialist to prevent perminant damage.

My son has BP problems caused by his HMS, if he gets up quickly he falls back down or he faints but he normally remembers to be careful.

Trialia

sunnyone wrote: »

Mine do but Im a raretity due to my damaged pelvis, the muscles and shape of the pelvis make it very hard to totally dislocate a femur if your pelvis is normal and if they totally dislocated them they need to be seen urgently by a specialist to prevent perminant damage.

My son has BP problems caused by his HMS, if he gets up quickly he falls back down or he faints but he normally remembers to be careful.

It's actually not that unusual for people with hypermobility EDS to have hip dislocations or subluxations; they're usually partial and painful, though. The main problem caused by non-bendy people's hips dislocating is that those dislocations generally result in chipping bone and a lot more damage. My hip subluxations are why I use my walking stick, main reason - it helps me to brace myself to crack them back into place when they come out partially. (When it's full dislocation, it's an on-the-floor-and-writhe-it-back-in job.)

By the way, the BP issues and so forth that're associated with HMS/HEDS are generally called 'dysautonomia'. I get that too. Sigh.