Obtaining RAW PSG data

[Cam12]

Has anyone been able to get a hold of their RAW Polysomnogram data either from their physician or medical device supplier?

I’ve sent in several requests and they’re sending back everything but the info. that I requested and why I had the PSG to begin with (to assess upper-body movements) i.e.) EMG - occular, mandibular, arm, thoracic, abdominal, etc..

[srlevine1]

I made a similar records request and asked for all data (audio/video/instrumentation readings) for the length of the test. First, I was told only the reviewed report data was available. After inquiring further, it became a departmental policy issue for the neurology department. Then, I was given a final "no," suggesting it was impractical even though I offered to pay for the copying.

I would be interested to see if you can get the raw data and what you plan to do with it.

[Cam12]

I’ve been diagnosed with Periodic Limb (not “Leg”) Movement Disorder (PLMD) since 2005. It can impact legs, hips, upper-body and can involve both multiple (un)synchronized muscle groups at any given time and/or a single muscle repetitively (may be diagnosed as a tic if in facial area).
 
Fortunately, in 2005, it was easy to diagnose as it was in my legs/feet 90% of the time (I had a PLM Index of 44/hr. >15/per hour is diagnostic for PLMD). Unfortunately for me as far as testing and treatment, over the years the movements have moved almost entirely to my upper-body, esp. abdominal “crunches”. These can be measured upon special request - 2 EMG (electromylyogram) electrodes on each arm, one on (middle?) finger of one arm, one on each side of each eye, mandibles, front of jaw (3) thoracic and respiratory. These EMGs are each set at a certain frequency threshold that needs to be met or exceeded to “count” as a PLMS during a Polysomnogram (PSG).

In 2021 and 2022 I had PSGs. The referring doctor, the sleep specialist and I all agreed that measuring upper-body movements was THE primary goal of each PSG. For both PSGs I afterwards received a summary that only included PLMS of the legs. There is not one mention of PLMS in the upper-body - even to say there weren’t any…haha, not likely). Even though the EMGs were placed (incorrectly per my own video….strongly encourage this) there should still be EMG data.

So, after 2 PSGs at different orgs., after numerous requests to medical records and physicians, I cannot get any RAW or even summarized data on upper-body PLMS from any EMG electrode.

Without this data, it’s impossible (or horribly boring) to visually count all the PLMS over 8 hrs of sleep. In addition, physicians look at my sleep videos and roll their eyes as the data isn’t “official”. 20 years and still no “objective data” - like a detailed ECG - which would show PLMS and possibly help quide treatments and/or determine if a new medication, for example, is being effective.

Hopefully not TMI. I’ll post again if there’s anything new.

[Cam12]

I’ll call ResMes next to determine if they have a HIPPA exception.