Dr Depace dysautonomia/cfs

[Pink]

Has anyone heard of this cardiologist , Dr Depace? His website talks about fatigue, dysautonomia, fainting spells etc. But he has some mixed reviews.
His office is as lot closer though than Dr Systrom in Boston whom I was considering to see.

franklincardiovascular.com/autonomic-dysfunction-philadelphia/

This is a link to his page.

 

[Learner1]

Looks like he knows a lot. I couldn't figure out from the website but couldn't figure out if he does the tests my doctor did, described here:

https://www.neuroassociates.us/autonomic-test-preparations.html

 

[Pink]

I was not clear about what tests or treatments he uses either.
Will have to call tomorrow and see if they can tell me more.

 

[Learner1]

Sounds like a good idea. The tests were a lot more useful than sitting and discussing my symptoms...

 

[Cort]

Has anyone heard of this cardiologist , Dr Depace? His website talks about fatigue, dysautonomia, fainting spells etc. But he has some mixed reviews.
His office is as lot closer though than Dr Systrom in Boston whom I was considering to see.

franklincardiovascular.com/autonomic-dysfunction-philadelphia/

This is a link to his page.

I have no idea about Dr. Depace - and I'm looking forward to reading about him - but I would see Systrom.

Systrom has ME/CFS in his sights. The SMCI is collaborating with him on an ME/CFS study (which could mean you might be able to get in it. I'm driving all the way to Florida to get into a Nancy Klimas exercise for all the insights it might provide).

Systrom is also very well published. If you see Systrom you're seeing someone who is now embedded in and very interested in ME/CFS.

I would see Systrom! I've talked to him and written blogs on his work. On top of it he's a really nice guy

Whoever you see it should be really interesting. I think you're getting right into the heart of things with these guys.

 

[Cort]

I have no idea about Dr. Depace - and I'm looking forward to reading about him - but I would see Systrom.

Systrom has ME/CFS in his sights. The SMCI is collaborating with him on an ME/CFS study (which could mean you might be able to get in it. I'm driving all the way to Florida to get into a Nancy Klimas exercise for all the insights it might provide).

Systrom is also very well published. If you see Systrom you're seeing someone who is now embedded in and very interested in ME/CFS.

I've talked to him and written blogs on his work. On top of it all he's a really nice guy

So if you can I would see Systrom!

Whoever you see it should be really interesting. I think you're getting right into the heart of things with these guys.

Another place to look is Lauren Stiles site Dysautonomia International - She's got a list of dysautonomia specialists - http://www.dysautonomiainternational.org/page.php?ID=14

 

[Pink]

Thank you so much, @Cort . I hesitate about Dr Systrom for 2 reasons;
1 is travelling is extremely difficult for me. It leaves me sick for weeks.
2 it seems based on what a patient of his told me, and his website , that Dr Systrom is very specific in his criteria/theory of dysautonomia (a deficit of blood getting thru the blood vessels, if I understood correctly)
I am concerned that since i have no idea if I fit those parameters, my trip might be useless. It does not seem like Systrom treats other forms or causes of dysautonomia.
Can you shed any light on his theories/criteria, or any other information?
I did check the website, but it's hard to get honest reviews sometimes.

 

[Rebeccare]

Have you heard about the New Jersey Center for Fainting? That might be worth checking out.

 

[kangaSue]

Looks like he knows a lot. I couldn't figure out from the website but couldn't figure out if he does the tests my doctor did, described here:

https://www.neuroassociates.us/autonomic-test-preparations.html

Another test worth adding to this panel is a TST (Thermorelulatory Sweat Test) which is a measure of a patient’s ability to sweat when stimulated by a warm and humid environment. This test assesses both the central and peripheral autonomic nervous system’s control of sweating and body temperature regulation (thermoregulation). The pattern of sweating abnormality detected by this test (which is captured with photography) can be helpful in diagnosing a variety of neurological and autonomic disorders that may cause reduced sweating (anhidrosis) or excessive sweating (hyperhidrosis). These disorders include small fiber and autonomic neuropathies, radiculopathies, and central autonomic disorders including multiple system atrophy, Parkinson’s disease with autonomic dysfunction, and pure autonomic failure.

 

[Pink]

Yes I called them, @RebeccaRe. They didn't think they were the right place for my symptoms

 

[Pink]

@kangaSue I don't think Dr systrom does that test, I'm not sure who dfoes

 

[Pink]

@Cort , @kangaSue the people at Dr Depace didn't have much info . They said he uses an ANSAR test, maybe a tilt table or sweat test.
Depace mainly tries to treat dysautonomia with diet & supplements but will give meds if really necessary.
Since I have either bad reaction or no benefits from supplements this worries me.
Frankly, if I do have dysautonomia, I think it needs medications to be dealt with.
However, he does seem to deal with a larger range of dysautonima than Dr Systrom.
Or perhaps I'm misunderstanding about Dr Systrom & he does treat various forms of dysautonima.
Can anyone clarify?

 

[Cort]

Thank you so much, @Cort . I hesitate about Dr Systrom for 2 reasons;
1 is travelling is extremely difficult for me. It leaves me sick for weeks.
2 it seems based on what a patient of his told me, and his website , that Dr Systrom is very specific in his criteria/theory of dysautonomia (a deficit of blood getting thru the blood vessels, if I understood correctly)
I am concerned that since i have no idea if I fit those parameters, my trip might be useless. It does not seem like Systrom treats other forms or causes of dysautonomia.
Can you shed any light on his theories/criteria, or any other information?
I did check the website, but it's hard to get honest reviews sometimes.

My understanding is that Systrom's findings in general suggest that problems with the blood vessels are preventing adequate returns of blood flows to the heart in ME/CFS. However his testing also sometimes reveal problems with energy production.

He does invasive (catheter required) exercise tests to determine this. I honestly don't know what he does with dysautonomia. Both Systrom and Oaklander do believe that an autoimmune process or infection is probably destroying autonomic nerves but as to the many other autonomic nervous system tests I don't know if he does them or not. I would call his office if he's a possibility.

I sent you a PM

 

[kangaSue]

Frankly, if I do have dysautonomia, I think it needs medications to be dealt with.

The tests you mentioned being done here will give a good indication of having dysautonomia, it just makes for a more comprehensive panel if they can do the TST one as well but probably doesn't make any difference to what the course of treatment will be if there's a positive result.

 

[Pink]

I called the autonomic centers at some nyc hospitals, they only do tilt table testing.
I'm really not sure where to go

 

[RU72]

I have no idea about Dr. Depace - and I'm looking forward to reading about him - but I would see Systrom.

Systrom has ME/CFS in his sights. The SMCI is collaborating with him on an ME/CFS study (which could mean you might be able to get in it. I'm driving all the way to Florida to get into a Nancy Klimas exercise for all the insights it might provide).

Systrom is also very well published. If you see Systrom you're seeing someone who is now embedded in and very interested in ME/CFS.

I would see Systrom! I've talked to him and written blogs on his work. On top of it he's a really nice guy

Whoever you see it should be really interesting. I think you're getting right into the heart of things with these guys.

How does someone get into these studies?