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ozymandias

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How do you advocate for yourself when you have very strange (and possibly dangerous) health problems?

I’m sorry if this post is a bit too long or emotional, but I would really appreciate if someone read it and told me their thoughts. I feel very isolated in my experiences, and I would really appreciate being heard....

ozymandias ,

Sorry to hear of your struggle. Like others already suggested, keeping a diary with your symptoms can help the diagnostic proces. However the symptoms you list are difficult to pinpoint to one specific neurological problem, assuming you already had an MRI of your head, an EMG and a lumbar puncture.

In my experience doctors can sometimes be very good at what they do, but very bad communicators. The way you can best stand up for yourself is to prepare your visit. Write down the questions that you have. It helps if you can clearly articulate what it is that you want from them. But allow yourself some time to think about this question first. Sometimes, what you need has more to do with being taken seriously, or being reassured nothing bad is going on than having a diagnosis. Keep in mind that although modern medicine has come a long way, we still know very little of the intricate processes of the body. Maybe there isn’t a know diagnosis yet that explains your symptoms. This doesn’t mean that your symptoms aren’t real, they absolutely are! A good doctor should in this case be honest and tell you that they just don’t know, and they are out of testing options. If this is the case they should however try to help you manage your symptoms and get your life back on track. Lastly, consider that there are a set of psychosomatic disorders that can give real physical symptoms, but they should only be considered if other diseases are ruled out first. Read up on them, but don’t let a doctor suggest it without having properly gone through the diagnostic process.

I wish you the best of luck and hope you get better!

ozymandias ,

TeXla

ozymandias ,

I do. I guess it depends on your workflow though. Gnome tries to get out of the way and is quite minimal. I’m that way too, like to keep my desk uncluttered for example. I couldn’t even imagine a task that requires me to have 10 programs open, but if I had to, I guess I would try to group them on workspaces and try to limit the amount. Would be far easier for me to remember that way.

I’ve tried other DE’s and window managers, but they all feel like taking a huge step backwards to me. You should however try to find something that suits you the best, maybe KDE?

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