Vicc

Hey.... hope you are ok - or at least holding up ok..

Firstly, I read all your posts and really think about them - and try and fit your suggestions/ theory to my own personal knowledge of RSD and the medical theory of RSD (should be theories really).. However, sometimes you give me questions to think about, or points that I have to research and discuss with others before I can come back to you. - I have the equivalent of a US degree in chemistry and still tutor in it to first year uni students and many of my friends are chemistry/ biology/ biochemistry/ neuroanatomy students....

We all have posts that drop off the page - but, please, think! I have concentration span of a gnat and I know that others here haven't got the background in science that I have, or the opportunity to get hold of resources which can help understand certain bits. You have been researching this for 10 or so years? (that bit might be wrong) and are far more knowledgable about your theory (whether right or wrong) than we are, and it takes a while to understand it and how it applies.

I feel I would be doing your work, research and articles a disservice if I were to just skim read them and then not attempt to really understand what you are discussing - but unfortunatly with RSD I don't have all day. I have minute patches where I can work on understanding, where my vision comes together, my brain kicks in and I am able to become the girl I used to be - one that didn't struggle with how to spell "gone" (gorn) or what words mean or read the same page 4 times and taken nothing in. However this then means that it probaly took me a fortnight to understand what you said properly and to have thought about what I want to say... by which time NT has moved on. I think it would be great to set up a medical thread for this sort of thing so that we could all have time needed to understand your posts.

Also. Being honest. Many of the threads that you publish in tend to turn into "heated discussions" between A and yourself... and before you know it all the important parts of both your arguments have been melted down...... and in an attempt to stop the "discussion..." it is hard again to post about your ideas.

About the cyanosis - it is recorded in my medical records that I am cyanotic - there are pictures and other records to show that. I also have had dopleers and thermographies done which support this. In the UK it is used as part of the diagnostic criteria - I think. I know that their patient handbook has stuff about cyanosis in. It also makes sense in the context of hot bone syndrome/ osteoporosis/ skin problems and co-ordination problems.

It is wrong that doctors don't examine for cyanosis - or that they don't record it. Does your neurosurgeon? I was told that the cyanosis was why I had the blocks done.

Also, onto ketamine - I don't agree. I have been using it orally for 18 months and find it far better than morphine/ oxycontin/ pethidine/ fentanyl/ methadone/ and whatever other drugs in that category I have been thrown on for pain.

Please keep up your theories. Do you save these emails to your computer?

Also, have you tried a laptop tray for the laptop so you can work flat in bed? that's what I do alot of the time, and I then use dragon.

love and take care and thanks for all your thoughts

Froggsy xxxxxxxxxxxxxx

I suppose the conclusion to this is - I am here, thinking and listening... you talk about making things more accessible to others - the best way I feel we could do this is to have another sticky which included definitions for people unfamiliar with medical jargon, to give them the time and space to understand