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Old 17-12-2008, 10:03   #21
Matblack
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The main private chap is also the NHS chap
This happens a lot more than you'd expect, the best treatment Mum has received has been exactly the treatment she would have got on the NHS in fact all her recent treatment has been at NHS centres with NHS doctors. She said that you are in the best place for both treatment and support being near to London.

MB
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Old 17-12-2008, 10:15   #22
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Thanks hugely fir the replies, particularly MB's input. I've been on a night turn hence me Reading but not replying (MB I got your voicemail too, I had to hide and sniff lots x). I'm typing this on an iPhone in bed as I've just got in from work, I'll do a decent reply later.

Thanks again, nor feeling quite so desperate this morning. Will call gp about her back later too and hopefully they'll reassure me a bit.
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Old 17-12-2008, 10:17   #23
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Meh I don't know what to say poor little mite. Give her a big hug from me.

Hope MB's info/mum can be of use.

You know where I am xxx
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Old 17-12-2008, 15:18   #24
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Morning *yawn*

I've called the GP surgery, they want to see her spine so I'm taking her in tonight at the end of surgery.

MB I can't thank you enough. I will give your mum a call, possibly later after seeing this GP today if not in the morning.

I was in an absolute state of panic last night after seeing what else Daisy may be tested for (leukemia et al) but I've realised I'm very much putting the cart before the horse and will deal with it when we know for sure. Dosnt stop the dull ache in my chest though lol.

Thanks for the lovely texts and messages, the support already has been massively helpful and reassuring

MWAH!
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Old 17-12-2008, 15:21   #25
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Morning *yawn*

I've called the GP surgery, they want to see her spine so I'm taking her in tonight at the end of surgery.

MB I can't thank you enough. I will give your mum a call, possibly later after seeing this GP today if not in the morning.

I was in an absolute state of panic last night after seeing what else Daisy may be tested for (leukemia et al) but I've realised I'm very much putting the cart before the horse and will deal with it when we know for sure. Dosnt stop the dull ache in my chest though lol.

Thanks for the lovely texts and messages, the support already has been massively helpful and reassuring

MWAH!
Where is the swelling on her spine? Is it in the cervical curve (bottom of the neck).

MB
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Old 17-12-2008, 15:27   #26
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No, about 2/3 of the way down.

Reading the internetz again and I really can't read any more. It's terrible
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Old 17-12-2008, 15:35   #27
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No, about 2/3 of the way down.

Reading the internetz again and I really can't read any more. It's terrible
Cool, swelling in the C-curve seems to be asociated with Ankylosing Spondylitis which is a form of RA, its not very nice but as I say it presents in the C-curve so its unlikely to be that. If she has JIA It could be a nodule or it could be totally unrelated so don't worry too much See what the Doc thinks and let us know how shes getting on

Kitten is right reading about it is likely to upset you even more, you are in a position to see some of the best doctors in the country and they will be able to tell you far more and far more up to date informaation than the net. It may not even be JIA, she needs to be run through a batch of tests and then see where you stand don't panic or assume the worst diag/prog-nosis.

MB
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Old 17-12-2008, 19:34   #28
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Ive got nothing to offer as its not something I have any experience with (although if you do need help with insoles that might be something I could talk about) I just wanted to post to say what a diamond youve been Matt, im sure youve helped Pebs immensely and I just wanted to say good on you.
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Old 17-12-2008, 23:46   #29
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Pebs, I'm really sorry to hear about your daughter and can't offer much meaningful advice.

I occasionally do some work for GP surgeries. Today over coffee, I happened to get to speak to a senior partner (female, mid-50s, two grown-up children) where I was doing some work. I gave a brief outline of what I have read here.

Her first comment was, "if you live in a major city, visit a walk-in children's speciality clinic at your nearest large hospital - you shouldn't need a referral".

Her second comment was "go back and speak to your GP - tell him/her of your concerns and ask for further information and guidance".

Her final comments were the most telling, I summarise them thus:
  • Juvenile arthritis is very rare, in 20+ years as a GP, she has never seen a case
  • She would be very reluctant to give advice on such a case unless she knew EXACTLY what she was talking about
  • Despite what some members of the public believe, GPs do not know everything, sometimes they can ONLY refer patients to specialists
Good luck Pebs and Daisy.
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Old 18-12-2008, 11:33   #30
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Saw a different GP last night who went over the whole symptoms again with us. She agrees with the original GP and told me the spine will be all part and parcel of whatever it is she has. I'm at the stage today where I think arthritis will be a relief. She woke me up at 5am cause her shoulders and knees hurt.

Matt....I will call Mrs MB snr, but I can't today. My foal is also going downhill and I don't think I can talk on the phone without wailing quite loudly today. Please don't think I'm ungrateful, I really am but I need an ostrich day
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