Recent Posts

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Talk / Alternative pain scale
« Last post by ditchdwellers on 28 Feb 2021 06:08PM »
I saw this somewhere else and thought it made a change from the usual 1 to 10 pain scales!
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by ditchdwellers on 28 Feb 2021 04:30PM »
Well I'm afraid I'm checking out for the afternoon, but there's plenty of cake left.

There's plenty of Colin left. I ordered a large one (replacements available at your nearest M&S food hall)

If you require more tea or hot water, whistle loudly as Mr DD is currently still on the shed roof. But he will attend to your every need. 

Thank you for coming and discussing the diagnosis of different disorders, and the future potentials. We certainly live in interesting and fast moving times. 
I look to the future with hope. I hope you all can too. :f_hug:
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Cafe / Re: Spring
« Last post by ditchdwellers on 28 Feb 2021 04:08PM »
Your garden sounds lovely Oldtone. 

I'm looking forward to getting my Covid jab on Friday and the end of lockdown as I was given some garden vouchers to spend at the garden centre for  my birthday last year. I would like to buy some large pots at the front of my bay window. It sits in sun most of the day, but and this is a big but, is it can be very windy. It's about a three minute walk to the sea and the wind can come off the sea quite frequently.  

What sort of planting would you suggest?  I've looked online for suggestions and it appears to be a bit contradictory. 
If anyone has any ideas, I'm completely open! I had thought of some evergreen shrubs however I'm not sure how wind or salt tolerant they might be. 

I need help!
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by ditchdwellers on 28 Feb 2021 03:36PM »
That's really interesting to hear about things from a different perspective, Oldtone. 

One of my concerns is that AI won't be able to tease out the nuances that an experienced consultant could. I have often found that symptoms that I have dismissed as 'normal' are in fact all pointers to diagnosis. Particularly if something has crept up on you slowly or you have always had it/runs in the family. It is your normal and you could easily not identify it as a symptom. 

It is the probing questions asked by the doctors that get the answers. I'm sure AI will be an aid however it can't replace the knowledge and experience of a good doctor.
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by Sunshine Meadows on 28 Feb 2021 03:19PM »
All of that such a lot to have to deal with what would the interactions and medication interactions and everything. I don't think I have anything rare so I think things are pretty straightforward for me. In order for me to get benefits it did take me accepting the vertigo on my ability to walk and move around.

It's such a lovely day the sun is still shining and it's good to be able to enjoy it thank you.

Good point I had not thought about how people the program the algorithms need to know how the devices the AI make the diagnosis that they do to understand how to limit the amount of misdiagnosis. That is also of course the fact that the AI will be done diagnosing human beings which are not programmable we each ownn history and way of being I do think sometimes doctors and nurses get a sense of who you are and what needs doing in the air.
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Cafe / Re: Spring
« Last post by oldtone27 on 28 Feb 2021 03:17PM »
I've just spotted some concusses popping up in a shady part of the garden. The blue bells spikes are well through, but no sign of buds yet. At bit early I think, they come on all of a sudden.
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by oldtone27 on 28 Feb 2021 03:12PM »
Hi, its a bit too soon after my dinner for more bites so the Kenco and scones will have to wait till tea time. Actual I've got some hot cross buns.

I was diagnosed with EDS as a child although I don't think they called it that then. I had a subsequent diagnosis by a rheumatologist (Dr Beighton) researching it when I was a teenager. This was by coincidence because he was on duty when I went to A&E over something else. I don't think many doctors were familiar with it then.

As far diagnostic algorithms are concerned I was working with someone who was involved with a very early version for use on a prototype pen tablet pre-dating the I-pad. However  amount of data and knowledge  involved was proving difficult to accommodate under the technology of the day.

Still is a problem if data is to be assembled by experts. AI is probably the way to go as it can gather vast quantities very quickly. Its problem is that it is very difficult to interrogate to understand how it reached any particular conclusion. Hence it has a tremendous testing burden to gain confidence.
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by ditchdwellers on 28 Feb 2021 03:05PM »
So far, my list of ridiculous and bizarre conditions are:

  • Ehlers Danlos Syndrome Hypermobility type - rare
  • Gastroparesis- not rare
  • Dysautonomia- not rare 
  • Osteoarthritis  - not rare 
  • Diabetes Insipidus- rare
  • Idiopathic Intracranial Hypertension  - rare
  • Cluster headaches- rare
  • Occular migraines- not rare
  • Psoriatic Arthritis - rare  
  • Central Sleep Apnoea- rare
  • Idiopathic hypersomnia  - rare

I'm undergoing investigations with a gastro consultant at the moment, but he's as much use as a chocolate teapot so I've asked my GP to refer me for a second opinion. So I may have something new to add to the list soon! 

It makes life interesting. I went out for an MRI yesterday and I've got a blood test on Tuesday so nobody can say I'm not getting out  :f_laugh:
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by Sunshine Meadows on 28 Feb 2021 02:59PM »
Don't worry about one finger typing 
 Also the sunny weather voice to text and good company is making me talkative  :f_smiley:
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Talk / Re: Rare Diseases Day 28 Feb
« Last post by Sunshine Meadows on 28 Feb 2021 02:54PM »
Having a solid diagnosis then being re diagnosed Make me think of how people who find out their parents aren't their real parents must feel. I mean and the same way that knowing our parents gives us identity knowing our diagnosis gives us identity and having that changed at best causes a big jolt to the system and at worst well it doesn't take a lot of imagination for that. So many of us rely on the diagnosis we have to get the benefits we need to keep the roofs over our heads.

This caterpillar cake is good I'm not sure I've ever had one before.
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