MDS Protocol
 

What sort of information is an MDS typically interested in collecting? Here is what I can gather from my 30 or so visits so far and the questions they ask me.

trouble getting dressed
trouble moving in bed
falls
tremor
rigidity
sleep
handwriting
mood

what we were asked...
 

We were at a teaching hospital in March and boy, the Q the intern asked, whew-ee!

In addition to what you posted, she asked about going to the bathroom, when, how often, difficulty, etc. and gave a mini-mental exam (it was actually pretty hard, my PD spouse did better than me and he was medicated with the lovely brain fog that brings, not sure how he did it but he did), all the activities of daily living (eating, bathing, dressing, driving, walking, using the computer, the phone, cooking/operating a stove, sleeping (how long, how frequently and when he wakes up, for how long, can he get back to sleeep easily, nightmares/dreams, can he remember them, etc.)) it was very, very thorough and exhausting, to be honest. One thing I thought interesting: I mentioned that my husband has some pretty radical jerks as he's falling asleep sometimes and the intern told us she did that herself, and it was nothing-I thought that pretty strange.

She asked when a lot of these things began to occur to, and of course you can see the PD before dx after you've been dx'd but at the time you just think you're getting older, tired, just had a new baby (our situation), and never even consider something like PD. Our big symptom was fatigue, my husband could hardly make it through the day. But we were still clueless until a co-worker made some comments that send us running to the neuro.

We spent a lot of time going over meds as well, did they work, what were the side effects, etc. We also take a lot of supplements which she noted but didn't ask much about.

We have been to many neuros and this was the only place that asked this many questions, the appointment was almost three hours long and exhausting for everyone. After the intern finished the neuro came in and went over everything but in a much more consolidated fashion. Hope this helps.

I can't answer first one!!
 

WHAT DRUGS ARE YOU TAKING?

What is the primary problem you are experiencing now?

Checks my neurostimulator to see how long it has been off since he saw me last.

It seems like the week or so after the appointment my symptoms progress, but I have to wait a year to see him again.

Moves my arm up and down, checks reflexes, asks me to tap fingers.

Appointment is over in 10 or less minutes. Copay is $40.00.

Sometimes you get lucky
 

This is one area where I feel like I got lucky. I went to our local University hospital and was diagnosed by an MDS. Within the year he left and went to a prestigious research University about eight hours from here. I searched around for a while and couldn't find anyone that I liked and returned to my original MDS. It costs me about $150 once a year to fly up rent a car and see him but I really believe my care is exceptional. He not only concerns himself with my Parkinsons but my general health as well.

A couple of years ago I was having some other health issues that made traveling difficult and again I hunted around for someone closer at hand. Didn't work out this time either. After two years I went back and I am so glad. It may costs me a bit more but it's worth every penny. I will never settle for mediocore care, it just isn't worth it.

Sorry to sound like a broken record...biomarkers!
 

The clinical rating scales used by those physicians trying to diagnosis and treat patients with PD are blunt to say the least. Not only are these appointments tiring and inefficient for you but for the physicians as well...surely this ideal for anyone.

The vast majority of PD patients aren't even seen by a Movement Disorders Specialist as evidenced by pharmaceutical company records that indicate that over 60% of PD patients take sinemet as their first PD drug (which is far less likely to occur if someone is diagnosed/treated by a MDS). Non specialists tend to probe less and offer the quick "fix" of sinemet...which may not be optimal for long-term treatment options. Seeing a MDS is likely one of the most important steps you can take and one of the most important messages for those grappling with potential diagnosis.

Our inability to properly diagnose and accurately monitor disease progression remains a major challenge not only in clinical care but in our ability to develop new drugs.

Discovering and developing biomarkers might be one of the most important thing we can do to transform our treatment options for patients. This has been a major push at MJFF since our early days (over $25 million spent on biomarker discovery and a new significant initiative -- launching very soon -- a $40 million observational study to verify PD markers of progression)...you can learn more about biomarkers including listening to a podcast from Dr. Ken Marek at www.michaeljfox.org/PPMI

Debi

yes biomarkers!
 

I'm not eligible for the PPMI biomarkers trial because it is only for 'de novo' newly dxd pwp (not on meds). But my husband and I are in the 'Probe' biomarker trial, part of a follow-on of the Precept trial. This Friday we go for our 2nd year of testing for this trial.

But back to the subject ... if you are 'de novo' or know someone who is, I hope you will join the PPMI trial!