MRI showed absolutely nothing, yet DD can hardly walk

[StandardEEEK]

Previous thread here.

Yesterday we got the results of the long awaited MRI. They showed nothing, absolutely nothing.

The secretary who told me acted like she was giving me good news. How can it be good that DD is in constant pain and limping yet no cause can be found!?

Obviously relieved to rule out some hideous possibilities, but nothing?!? How can it be nothing!!!

I don't know what to do really. Am awaiting the consultant's letter, I think I need to push for a dx of Ehlers Danlos which he was reluctant to do previously.

Meanwhile DD is now having physio but HATES it. She manages the exercises for about a minute before she has to stop. We do however have a hyrdotherapy session this afternoon. Hopefully this will be beneficial. We also have an orthotics apt next week. And we are swimming 3x per week. Yet to date nothing has helped and we have no real way forward. Just a few months ago she was fine, dancing, gymnastics, running, now she walks with a limp in pain all the time. How the hell has this happened to her?????? (Actual answers to that q not really expected!).

Dingit - I’m so sorry she’s in so much pain. Must be hugely frustrating for her, and also you to see and feel helpless.

My daughter, now aged 10, has suffered with major pain in her leg for a couple of years. She is very active for about 3 months, then unable to walk and wheelchair bound for about 3 months. It alternates. When it’s bad she can’t weightbare. Her leg literally buckles under her.
She has now got a diagnosis or CRPS. It’s teally dibilitating. Like you say..to watch from such a mobile child, to one that is physically disabled, with no obvious cause, is horrific.

Flossie, so sorry to hear about your little girl. I hope they can get to the bottom of it soon.

Are there any others signs that DD has that are making you wonder about EDS?

The first sign DD showed was about age 11 when she started with heel pain in both feet. Was written off as growing pains and we bought her very cushioned trainers which seemed to help but she couldn’t walk far before she was in pain. She was diagnosed with EDS (hypermobility ) about 4 years ago by a rheumatologist at The Royal National Orthopaedic Hospital in Stanmore. I then saw the same consultant as had had weird and wonderful seemingly disconnected symptoms that had been diagnosed as fibromyalgia. I’d had tendinitis in my ankles and wrists since childhood; sprained ankles, sprained neck, gastric problems, fatigue, bruising, fragile skin, dental overcrowding and herniated discs, dislocating thumb and shoulder joints. If you do suspect EDS I can recommend Royal National Orthopaedic Hosp. You can ask for a referral from your GP. I travelled from Yorkshire to see the consultant and although it was a real trek it was worth it. DD who lives down South still has appointments there and rates the care she gets there.