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!).

You poor thing. I have no idea what you should do except to say don't be afraid to make a nuisance of yourself. Hopefully some one useful will have better advice. But I really feel for you and your DD.

Thanks. General sympathy also appreciated, DD and I are feeling rather pissed off!

Hydrotherapy was actually really good, in that the warm water meant she could do exercises with less pain, and she had two physios working with her who were both really nice, which is good, I have been feeling a bit invalidated. However DD is in loads of pain now.

I have always been s but rubbish st making a fuss with the NHS (def not for other things!), but I am learning!

Can you get referred to a pain management clinic whilst you wait for a diagnosis?

What area did they MRI? Lumbar spine?

I don't know that a dx is something the consultant cares to achieve anymore f1fan :( but yes, I should seek a referral for pain management.

Oddboots the MRI thing they put over the area to be MRI'd (no idea on tech terms!) covered her pelvis and a bit more.

Hopefully they have examined her spinal cord, her symptoms have some relation to mine, I have a mild form of spina bifida with a tethered spinal cord.

On an MRI that would show as the conus medullaris (bottom end of the main spinal cord) being lower than it should be. As spina bifida and EDS appear to be linked I would have thought it would be something for which they would check.

I just briefly read your linked thread. Apologies as on pretty heavy duty painkillers misled today, but have they said why they have ruled out bursitis? I have suffered from this and the description on your thread of it, feels like it's deep in her hip bone on the side, matches eaxactly

My consultant also said that it isn't always visible on MRI on X-Ray's and mine was a classic presentation (However I have previous history of inflammation and synovial (sp) fluid issues) she also said bursitis can be diagnosed by ruling things out as the symptoms aren't always (what's the word I'm looking for) proved with evidence such as X-rays. I hope that makes sense, I am extremely woolly headed!

Your poor DD, hip pain is awful. Agree pain management referral would be good and physio
is definitely worth it as its so easy to become unbalanced and have problems thoughn compensating.

I understand also how important to get a diagnosis but this can take so long, it may be worth just focusing your thoughts purely for treatment in advance of a diagnosis (which may never be definite, or could take a long long time) I know it's hard.

Sorry I took so long to type my post (concentrating it crosses with yours
about diagnosis. It's hard to have something without a name, particulary when pain is involved, but it shouldn't prevent the pain high exists from being acknowledged and treated.

Oddboots - I hope they have checked for this! Although I think it is unlikely as the pain is specific to her hip I would still like to hope everything is checked.

Purplehair - They haven't said why not bursitis. The consultant was clear he thought it was not, but didn't tell me why - I will chase on this when I get the letter from him actually. Even if the reasoning is good I really hate not being told they WHY part of these things actually - it is a bit condescending really to assume that us 'laypeople' do not need to know!

I am slightly more with it this am

Just to say I have had a reasonably clear MRI yet have been in excruciating pain so I understand the "yay nothing's shown" v "well wtf is it then" feeling!

I hope you get some proper answers from the consultant. I find taking a pen and notebook and taking notes helps sometimes, both to help you remember and encourage good communication. If you have a sympathetic GP it really helps, my GP referred me to a second consultant once when I had issues with the first.

I think I remember you said she had seen a rheumatologist, there must have been a reason for the referral? If there were sufficient markers to refer in the first place surely this would indicate something?

Disclaimer- I am in no way medically qualified, this is only from a "patient" perspective!

I remember your thread, I'm sorry she's still suffering.
My dd is off for an X-Ray think pm, she has had ongoing hip pain since she was 9, now (17). I really don't think they will find anything

Thanks, it is the most frustrating thing!

Dingit I hope your DD's x ray goes well (and hopefully shows some nice clear and simple issue that can be easily resolved - here's hoping).

Purple, yeah, I think the consultant she saw was a paediatric rheumatologist. That was who she was referred to when x rays showed she did not have hip dysplasia as originally thought by the GP. I don't know who else she would be referred to for joint pain though as a consultant?

I suppose a rheumatologist is the best choice automatically for joints?. I just remember when I was initially referred to rheum my GP said something along the lines of I was being referred due to inflammation markers on a blood test, so I wondered if your DDs bloods were the reason.

I was actually referred to pain management clinic before the rheum though and they really helped even though I had, at the time, no official diagnosis.

I'm suffering with my hip badly today so I feel for your DD. It must be awful having this pain at a young age.

Things that have helped me have been, apart from the drugs of course, some lidocaine patches, I also had injections (some steroids some anaesthetic), and not doing too much although this last one is hard to stick to maybe if you can get a pain referral it would be helpful for her

I was following you earlier thread to see if you got some answers that I could use. I'm so sorry she's still in such pain.

I've got a tens machine now and that really helps as pain relief so I can recommend it, you'll always find it a useful thing to have. I've been to the Physio today and she's given me insoles as I'm flat footed, so I'll let you know if they help at all

Could it not be muscular/soft tissue? It can cause horrific pain.

I had a problem with my iliospoas muscle. Three consultants missed it but an osteopath found the problem and after months of treatment, it was back to normal.

I was limping and everyone assumed it was my hip.

health.ucsd.edu/specialties/surgery/ortho/areas-expertise/sports-medicine/conditions/hip/Pages/iliopsoas-tendonitis.aspx

Very sorry to hear about this, but may I enquire, did your daughter's symptoms come on shortly after receiving the HPV vaccination? (Gardasil.) Her symptoms sound very, very similar to many testimonies of girls injured by this vaccine, and they all have the same stories of test results coming back clear etc. For more information, please check out:

Www.cbc.help
Www.sanevax.org
Www.regret.ie
Www.facebook.com/AHVID.UK

You may also like to know this vaccine is currently undergoing a safety review by the European Medical Association.

Bone infection? One of DD's friends had a bone infection & was hospitalised and now has horrendous hip pain

My DD had an awful 2 years with hip pain, initial thoughts were Perthes but it turned out to be a virus -just a general virus that was causing the hip pain.

The inflammation and fluid did show up on the MRI though.

Along with the hip pain our wee one was very poorly and pale -we thought that was due to the pain but in hindsight was the virus making her poorly.

Good luck, I hope you get it sorted.

Hi OP i have just sent you a pm! If you want i could really help you with this! hOpe youre dd is a bit better!

I remember your previous thread. It could just be EDS, you know. EDS hurts , i mean it really fucking hurts, and the tests often come back normal. I have EDS so badly that I'm in a wheelchair as my knees and hips won't support me for more than a few meters. I take opiate painkillers all day everyday and am still in excruciating pain. I have intestinal problems and heart problems. Virtually all my tests come back normal and all x-rays/mris have ever shown for me is premature, but mild, osteoarthritis. This is simply the way EDS is. If she does have EDS, and it does sound very likely, then pain management and physio is the way to go. Remember she might get better when puberty hits

Has she ever been bitten by a tick? Lyme disease can cause a number of issues. My friend was being treated for sciatica and could barely walk, she tested positive for Lyme.

I have had it for 3 years now and my hips were very painful and popped a lot to start with. It might be worth asking for the test...

Is anyone else in the family hypermobile ????
EDS is a genetic condition so should be found by blood test ! How did she score on the Beighton Scale?

I know this thread is old but what happened in end? My friends dd is in exactly the same situation.

My dd has been diagnosed with hypermobility and fibromyalgia. She manages on a cocktail of painkillers and physio. She's at the hospital today for physio, she in her second year at uni, and every day is a struggle.