Asking for Diagnosis

[trekster]

re the refusal of DLA, i guess your son couldnt get carers allowance?

i guess appealing/reapplying (if longer than 1 month) is out of the question?

[madmum]

Is longer. Barkingmad said not surprised as hms alone usually not enough. He does have ibs,pain amplification and migraine. He so nearly ended up in a wheelchair,intensive physio saved him. His rheumy consultant would not look at possible p.o.t.s. He is in agony again now with his knee. Going to be a long night.

[mazza111]

Well we have fracture clinic and GP today.

I really couldn't believe it when he examined the wrong leg. Told her to take her left shoe off, so we thought he was re examining the break in her ankle, when he proceeded to examine her knee "errr Hello, it's the other knee!"


The nurse who was on said the fracture clinic really need to follow this up as she's dislocating too many times. Nurse was ace tbh. So our appointment is at 9:50!!! Here we go again.

Trekster: Stacey is adult, but she's still my baby. 21 years old, not been diagnosed, but 99% sure she has hms. This was another time she woke up with a dislocation. Tried the pillows between the knees but lost them through the night

Will update tonight and let u all know how she gets on xx

[mazza111]

Weeeeeeeeeeeeeeeeeeee seen a lovely German orthapaedic surgeon today at the hospital. Made a firm diagnosis of patella Alta. Where the patella rides too high in the knee. It's also common in people who can hyperflex or who have hms/heds. She's to go back in 3 weeks and he'll either arrange an MRI or arrange her physio. Reluctant to operate due to the success rate. Which is fair enough, but she's not even had any physio yet. If we get physio arranged I'm pretty sure things will improve

[madmum]

Sounds a bit more promising. Definately physio is needed to build up the quads. My son is the same and add to this his pronating flat feet and his shins were twisting. He is currently having major problems again after twisting his knee 9 days ago. He is just saying the kneecap is slipping so another long night ahead. Tried to get his physio today with no luck.

[mazza111]

aww hugs madmum. I dropped the hms link in the conversation with the GP today, but we both kinda think we should give this German guy a go at fixing things. Stacey came out of hospital ecstatic to have a name for her knee condition. I know it's not the diagnosis we expected, but it's the first time we've been and not been told she'll grow out of it. And he asked her about her hyperextensions, which is more than any other doctor has. Your wee lad's knees sound like Stacey's, slipping constantly. Just doesn't want to stay in place unless she's got the brace or heavy strapping on. She says every step is agony and is slipping with every step.

The knees I understand slipping, I have problems with my knees hyperextending, thankfully it's the only bit of me that does, but it's because of the thigh bone coming down at too much of an angle onto the knee cap which is forcing mine out (femoral patella something or other), I feel for your wee man cos each time it slips out it leaves them in agony, poor wee thing. I am thankful that Stacey got to her 20s before serious problems set in.

Anyhoo, enough rambling. We see the big guy in 3 weeks again, he's going to assess to see if Stacey has enough strength to start physio, 3 weeks of rest....can't see her being fit for it. That's twice in the couple of weeks it's gone while she's been sleeping to the extent where she's had to grab and pull it back into place. GROSS!!! Still freaks me out after seeing it for years!! But feel we really need to give him a chance to get things right for her

Hope the wee man gets better soon xx

[madmum]

She could try doing some straight leg lifts and also see if she can push the back of the knee to the bed which will help strengthen the quads while still resting. Too much rest will weaken it. I hyperextended both my knees for years but only the left now as I have no kneecap in the right. It is currently in bent position again so looks like I will be up for surgery again soon. I have an appointment on 12th april with the ortho who has taken over from my favourite surgeon. I have had scar tissue taken out twice and last time was told there is cartilage missing in the joint. They are reluctant to replace the joint due to my age. I have had 16 ops so far. My wrist is not repairable at the moment so hopefully will not need crutches on both sides as will not be able to use them. My problems started just short of my 21st.

[mazza111]

The leg lifts she can't do at all atm. Not without the knee supported. Don't know about the other bit. Just know she tried the left lifts at the hospital and heel slightly off the bed and it was shaking like mad. I will mention the other exercise to her. Stacey's still in denial at having any problems with her upper body. But she was slipping them when she was non weight bearing on the crutches. Not causing major pain or problems, but the same way her knees started slipping way back when....Short memory i guess. She's had a walk to shop this morning with support and crutches. Also decided to stop smoking May result in a little weight gain, which won't be good on the joints, but glad she's decided to ditch the weed. Will be some support for me in my battle too. I honestly don't think the positions she sits in when playing xbox helps either. I'm sure u guys being bendies will know exactly what I mean. She seems to sit in the most uncomfortable looking positions with legs crossed and bent over them as if she's laying on top of her knees so she can stare into the telly. I just wish I could get into the position of crossing my legs these days

[madmum]

Even the tiny lift with a shake is a good start. This is normal and if she can try a little each day she will get stronger. My son had to stop sitting cross legged as he kept slipping his kneecap. It stretches the ligaments further like that. Congratulate your daughter on trying to give up smoking,she is a brave lass going through the pain and trying to give up. You are being a great mum as mine is to me. Sending love and support to you both.

[trekster]

Just out of interest which position on the floor is best for the joints? i have weak ankles and knees.

[mazza111]

do you mean sitting on the floor Trekster? I would imagine that legs straight out in front of you with back supported, although I'm certainly no expert. Sitting on a chair might be a better option. I know it's not always comfy, I'm a floor sitter/layer too.

[trekster]

Cheers my hips are starting to move out of place when i sit, it might be the pc chair im using.

Sorry to hijack your thread,

[mazza111]

No worries, I often think it's sitting in weird positions gaming that causes half of stacey's problems. Just seems to be doubled over when she's gaming. Can't be good for her

[trekster]

Talking of which i think ive made my knee worse because my left foot collapses under the weight. Then it sort of crosses over my right leg under my chair when im at the pc.

[madmum]

How is Stacy doing? My son sits scrunched up at school and comes home with his neck,back and shoulders hurting. Sitting in strange positions is a common factor and his rheumy says it will not help.