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And where are they beginning? Effort preference.

I am doubting the accuracy of HRV as a predictor but then I am also doubting I’m getting good readings since I switched the the arm band. That’s why I’m wondering how he would vet the accuracy.

I’m really curious how Dr. Putrino intends to use the information from the people who volunteered and who use the Visible app.

I can stay under the allowance until I do something wild and crazy like taking a shower. Then all bets are off for a few days. Then there are the random increases in heart rate that send me over the limit just sitting still and sighing. Loudly. I’m thinking it is PEM related.

This isn’t theoretical for me. In an emergency room I was told that the Dr. would not answer my questions because I needed to believe in the diagnosis for the treatment to work. So I’m expected to make an informed decision without any information. The level of disrespect. My brain is so...

I did the FUNCAP yesterday and I do remember now. I’m not sure how I feel about it. It says I’ve improved. I’m finding that I’m getting so much information that I don’t really know what to do with.

And yet, no one is denying people diagnosed with FND of the treatment they are receiving whereas people misdiagnosed with FND are in fact denied treatment. In addition, I cannot survive anymore PT. I have not recovered from the last round.

I have been diagnosed with FND and both times the history was misrepresented in my records to make me fit the FND criteria. I don’t as far as I can see. Then there are the people with MS and Parkinson's. Do they have two diseases or were they misdiagnosed? Maybe FND is a mushier diagnosis in...

I sometimes worry about my memory.

Huh. I have no memory of a questionnaire. But I do see previous health reports.

Where is that? I haven’t seen this. So far it’s symptom severity but I’m thinking I’m looking in the wrong place.

You laugh. I’m in Boston struggling to get medical care. I’m freaking terrified.

They do have a FB group. It is very active.

I started with the free Visible HRV app. I have been using the more extensive paid app since it came out. Initially it was just a relief to have something affirm what I was experiencing. It also was very helpful in my learning ways to break up activities (dishes, getting dressed) in ways that...

So I’ve never heard anyone claiming acupuncture as a cure. I do go to an acupuncturist and have a heart monitor on. I’ve noticed that my heart rate drops during and for a short time after. Not a cure but not nothing either.

So I somehow I just thought it was a woman? I must not have read it as carefully as you have. I was pretty triggered.

David Tuller included a link to an article by a woman who was profoundly grateful for her FND diagnosis. It is long and in depth. She states that the largest FND clinic in the USA is in Boston, MA. Suddenly my experiences after moving to Boston, MA are making sense. They are training...

My question is: Does the Hoovers (sign?) actually indicate anything real? I also want to know what the difference is between a Functional stroke and a TIA. As someone from a family with a history of stroke this is a question that concerns me. Though I think the neurologist diagnosed me with...

I also find the HRV score to be fairly useless. Timing is a problem and the outcomes don’t match my reality. I’m currently trying to track certain activities. For example, I tend to lie in bed for quite a while before getting up. On a truly awful day I wracked up points. On a good day I...

It is important to me in order to get treatment for anything at all (was labeled with Functional Neurologic Disorder and now everything is in my head). Also I am spending so much time fending off the endless referrals to physical therapy. Last week was prescribed by gastroenterologist. She...