Mimicking

[LauraStimson]

I recently posted that my daughter was on a rehab for FND and was hoping this was going to be really helpful for her! Sadly not, since being home her FND is now mimicking some of the other symptoms she witnessed at rehab. Also when she asked the doctor why they were not trying to deal with the cause and not just deal with symptoms, she was told 'oh no we just try and help with the symptoms' definitely not what we thought. Sadly she does have many complex needs, really hope that she will get help. Not sure how or when, she is just 21 years old and has been dealing with this for over 7 years although looking back it could have been 11 years but misdiagnosed.

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LauraStimson.

Laura.

Please forgive me for my ignorance. I found a previous post referencing EDS in your daughter. Was the FND diagnosis concurrent with the EDS diagnosis or was it given at a separate time? I am trying to understand the overlay as EDS is as I understand it a rare, complex disorder involving the connective tissues in the body.

Again, forgive me but it seems like the EDS increases the likelihood of creating the very same neurologic deficits found in FND. I am struggling with why the FND was added when its profile was already present. Did doing so open up more access to health care for you? It seems like recent care did not produce a positive outcome as hoped.

I pray your daughter receives as much care and support as possible. What you describe is less than adequate. Worse, it appears that resources to support you and the family are also lacking.

What can we do to help you? These are two difficult diagnoses to cope with for your daughter and you.

Right now, I just want to see life get better for all of you. Medicine needs to step up here and be more engaged in this process.

Thank you for sharing and adding to my awareness.

My heart goes out to you all with support.

Dan / Seattle

[nurmihusa]

It does not matter what malady one is dealing with, STRESS always makes whatever it is MUCH WORSE. Inexcusably, when it comes to stress, doctors are breathtakingly talented at making a patient's stress worse through attitude (ignorance x arrogance) and lack of proper treatment. The best thing we can do for ourselves (often the only thing) is to root out stressors wherever (and whoever) they are and get them out of our lives.

[Hippydaisy]

Hi Laura, my daughter is nearly 17 , diagnosed with Fnd last year, and has had symptoms for 3 years.im so sorry rehab has not helped your daughter, it's an option I'm looking into at the moment with my daughter but I have reservations as hospitals make her so much worse due to stress, however how long do you just 'parent' it at home?.but we just keep fighting for our children , don't we. Sending love and take care of you too xx

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Hippydaisy.

Thank you for the compassion in your reply. My daughter age 30 fights this battle with the same diagnosis that I have. She and her husband live in same house with us. So much of the time, we "parent" each other. I do not know how we would otherwise survive this disease.

My thoughts are with your family today. Take care.

Dan / Seattle

Daughter and I know we will do anything to avoid more stress. That is a modification to life we stand by daily.