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To the point for the cognitively impaired:
new doc seems good, willing to help, open minded, but not an MECFS expert.
Meeting in a few days to discuss dysautonmia, but could discuss more.
want to tell him the things that will be most helpful in getting helpful treatment. Hoping forum members can help.
He is likely to run tests. Want to ensure
right tests are run,
and right conclusions made,
given the type of dysautonomia my wife has (considering types of dysautonomia pwme get, and what subset my wife might fall in)
but don't know how to work this out.
How to describe symptoms
What research results to highlight
longer story
Had a promising appointment with a different doc than usual for my wife. Her mental health had gone beyond the point of being able to manage without assistance so she has been prescribed mirtazapine. This is not the topic of this thread though.
To give doc context we also told him about the MECFS , sleep issues, and dysautonomia and described how it seemed there was a physical as well as psychological component to the mental health issues. He was very receptive, said I was very smart in how much I knew and how I had analysis how various things might be contributing etc, and said he enjoyed the conversation, which took an hour instead of the designated 15 minutes. So this was very positive, that he seemed already to know some stuff, didn't dismiss MECFS, was willing to discuss things.
We talked about how the pots like symptoms had been quite bad recently and would like to do something about it, how we had upped water and salt some time ago which helped but that the symptoms had gotten worse recently.
he ordered some blood tests.
he had said he had a long COVID patient who has pots like symtpoms and that he had ordered tests for them. He said he wanted to use the term dysautonomia rather than labeling it as pots for now.
so he is likely to run tests. But he is likely to want a good description of symptoms from my wife.
being cognitively impaired she won't be able to describe her symptoms easily, so we want to try and recall them slowly over the next few days.
i also think there is a great opportunity to point the doctor to research on the specific types of dysautonomia pwme experience. Of course this is tricky as it seems ME morphs and changes the longer you have it (and yes it's different for everyone, but my belief is a large part of this is because it changes depending on how long you've had it. As demonstrated with the natural killer cell research for instance. But also my wife, 3 months from having MECFS for two year, has had changing symptoms set even within her short timeframe of her illness.
I read one article talking about different subtypes, but I can't quite remember it - sympathetic versus parasympathetic dominant, combined with something else.
And I have read somewhere about low blood volume in pwme. Is this something you can test for?
i think he has already done electrolyte tests.
im pretty sure my wife's dizziness symptoms change a lot throughout her menstrual cycle. Are there clues in this? Is there anything she should be testing for in this regard? Should she do 34hr salivary cortisol tests?
any help would be appreciated
new doc seems good, willing to help, open minded, but not an MECFS expert.
Meeting in a few days to discuss dysautonmia, but could discuss more.
want to tell him the things that will be most helpful in getting helpful treatment. Hoping forum members can help.
He is likely to run tests. Want to ensure
right tests are run,
and right conclusions made,
given the type of dysautonomia my wife has (considering types of dysautonomia pwme get, and what subset my wife might fall in)
but don't know how to work this out.
How to describe symptoms
What research results to highlight
longer story
Had a promising appointment with a different doc than usual for my wife. Her mental health had gone beyond the point of being able to manage without assistance so she has been prescribed mirtazapine. This is not the topic of this thread though.
To give doc context we also told him about the MECFS , sleep issues, and dysautonomia and described how it seemed there was a physical as well as psychological component to the mental health issues. He was very receptive, said I was very smart in how much I knew and how I had analysis how various things might be contributing etc, and said he enjoyed the conversation, which took an hour instead of the designated 15 minutes. So this was very positive, that he seemed already to know some stuff, didn't dismiss MECFS, was willing to discuss things.
We talked about how the pots like symptoms had been quite bad recently and would like to do something about it, how we had upped water and salt some time ago which helped but that the symptoms had gotten worse recently.
he ordered some blood tests.
he had said he had a long COVID patient who has pots like symtpoms and that he had ordered tests for them. He said he wanted to use the term dysautonomia rather than labeling it as pots for now.
so he is likely to run tests. But he is likely to want a good description of symptoms from my wife.
being cognitively impaired she won't be able to describe her symptoms easily, so we want to try and recall them slowly over the next few days.
i also think there is a great opportunity to point the doctor to research on the specific types of dysautonomia pwme experience. Of course this is tricky as it seems ME morphs and changes the longer you have it (and yes it's different for everyone, but my belief is a large part of this is because it changes depending on how long you've had it. As demonstrated with the natural killer cell research for instance. But also my wife, 3 months from having MECFS for two year, has had changing symptoms set even within her short timeframe of her illness.
I read one article talking about different subtypes, but I can't quite remember it - sympathetic versus parasympathetic dominant, combined with something else.
And I have read somewhere about low blood volume in pwme. Is this something you can test for?
i think he has already done electrolyte tests.
im pretty sure my wife's dizziness symptoms change a lot throughout her menstrual cycle. Are there clues in this? Is there anything she should be testing for in this regard? Should she do 34hr salivary cortisol tests?
any help would be appreciated
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