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Posts: 12382
Jan 23 12 7:55 PM
Bratpony wrote:^Have you ever looked into any kind of connective tissue disorder? What you describe sounds awfully familiar. Obviously, as I said, I've never had any formal diagnosis, but many people who have connective tissue disorders never do, for the reasons Jana listed. It tends to be a lot of kind of related or even apparently unrelated things that people keep returning to their doctors for and no one ever puts all the pieces together or considers they may stem from the same cause. Most of the symptoms can pop up in anyone as single condition, which is why it takes looking at the 'big picture' to realise what's going on. I believe, and if correct I want a formal diagnosis, I have hypermobility-type EDS. I was told by a specialist once I had 'joint hypermobility syndrome', but I can't for the life of me work out whether most doctors just use this as interchangeable with HEDS or how many recognise it as just part of the symptoms of HEDS. One source says JHS is 'indistinguishable from EDS Hypermobilty-type' so clearly acknowledges the existence of that, but also clearly suggests JHS is something else BUT gives EXACTLY the same description as for HEDS. I have come to the conclusion most doctors don't know what they're talking about either. I generally just get the generic ibuprofen, but I have nurofen right no as that's all that was available last time I needed some. I try not to take it except when I really need it at the moment, which is during episodes like today or when I end up having to stand on the train. My mum is on amitryptyline at the moment, which she had diagnosed for trigeminal neuralgia. Honestly, my least favourite part of my (likely) EDS is the syndrome's tendency for lidocaine to work 'poorly or not at all'. Let me tell you: being a 7 year old girl who had to have 2 baby teeth removed by a dentist who said she 'must be imagining it' because she'd had a local anaesthetic does WONDERS for your lifelong feelings about going to the dentist.
Jan 23 12 7:58 PM
HNR83 wrote:All I can say from personal experience is I would avoid surgery at all costs. I hope you get some good info from you appt.
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Jan 24 12 9:57 AM
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Jan 24 12 11:48 AM
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Jan 24 12 12:44 PM
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Jan 24 12 1:17 PM
Jana wrote:AE, my husband had shoulder surgery and now has very little range of motion in that shoulder. He has to pick his hand up and place in on the table, desk, steering wheel. whatever. CK, if you do have surgery, look for a doc who is board certified in neurosurgery and orthopedic surgery. You cover a few more bases that way. Finding the surgeon who works on the spines of a professional sports team is a great idea. Has anybody tried that spinal decompression that chiropractors are advertising?
Jan 24 12 1:19 PM
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