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Non trauma related fractures

(10 Posts)
imnotalpharius Wed 01-May-19 10:47:53

Have a look at the other symptoms often present in Osteogenesis imperfecta, like hypermobility, dental issues, hearing loss. Do any of these fit? Definitely push for a decade, the vitamin d is interesting, my eldest is on a drug trial for oi and has to take vitamin d daily.

MiniMum97 Wed 01-May-19 10:43:23

What do you mean you are trying and do are your surgeons but no response?

If your doctors want you to have a scan you should just be referred. You then go on a waiting list. You should be able to call the service you have been referred to to find out waiting times. It shouldn't be a mystery?

If you don't want to wait then you can go private for the scan. It won't mess anything up NHS wise.

I have had private consultations and have private blood tests all the time. You can just dip in and out as needed. Lots of people do this to avoid waiting.

MumUnderTheMoon Wed 01-May-19 00:50:53

You can be referred back to the nhs after a private scan as far as I know one of my mums friends did this.

TequilaMockingbirds Wed 01-May-19 00:30:32

@MiniMum97 I am trying, believe me, and so are my surgeons. But no response. I just don't know what to do. There is a small private hospital close by which offers the scan. I didn't want to possibly interrupt any treatment by going private and I am a supporter of the NHS but I am at breaking point. Literally!

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MiniMum97 Tue 30-Apr-19 23:51:41

I would be pushing for a dexa scan.

TequilaMockingbirds Tue 30-Apr-19 23:13:36

@LiliesAndChocolate I was told that my X Ray and CT scan showed a fracture consistent with a massive trauma such as a car accident. I just stepped off a tube. No gap.

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TequilaMockingbirds Tue 30-Apr-19 23:01:28

Oh and not particularly thin, but not overweight either, healthy weight for my size. The surgeons were just as confused but I guess their focus is fixing the fractures, not so much the cause, hence the referral to another clinic but it just isn't happening despite their repeated requests.

Every new pain terrifies me but if I at least knew why perhaps I could know how to prevent it

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TequilaMockingbirds Tue 30-Apr-19 22:57:02

Thank you for replying. I haven't heard any mention of that. No bone density scan. I have been referred to an endocrinologist but it has been over two months now and I still haven't heard anything.

I am early 30s. No other medication. Apparently otherwise in perfect health apart from a vitamin D deficiency. The surgeons have been fantastic at fixing the break but I am no closer to finding out why it happened. Or why an excruciating pain ten years ago which eventually went away, has now been shown on X Rays to have been another fracture but never picked up. I am bloody terrified of another fracture as the last one was so horrific

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LiliesAndChocolate Tue 30-Apr-19 22:46:13

Didn't the surgeon mention osteogenesis imperfecta? There is a genetic testing that can be done that can not only confirm if you have it but also which type.
What about a bone density scan?
Do you take regular medication, such as asthma medication or other steroid base ones?
How old are you? Are you very thin?

I am surprised nobody started an investigation into this.

TequilaMockingbirds Tue 30-Apr-19 22:34:03

I have now had two fractures (one requiring emergency surgery) with no trauma, my bones are just breaking and the surgeons can't tell me why. I'm scaring myself silly googling but I am really at my wits end. Bones can't just break for no reason surely. Has anyone else gone through this or have any advice?

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