dysautonomia clinic?

[kisekis]

Im sorry for creating this thread i hope its ok. but i really need to find info if theres other people have taken online consultation with dysautonomia clinic?

http://www.dysautonomiaclinic.com/

It seems reputable though. And said it works&theyre experienced in it. but i dont really know much since im in different continent, im kind of worried if theres an issue with procedure/payment, i wouldnt know what to do.

Cause its pretty high for my budget. 

So i want to make sure i make the right sacrifice.

 

Pm ing me to give inputs would be ok too.

Thank you.

[Sushi]

I don’t know if this is possible with a clinic in the US as, legally, doctors have to see you in person for the first visit. And, they would want to do testing. Can you tell us what your specific goals would be for an online consultation? As most treatments for dysautonomia involve medications, that is also likely to be a problem as doctors, at least in the US,  cannot prescribe medications without seeing you in person—except in some very specific circumstances.
 

My guess is that many if not most of us here work with our local doctors who are not specialists in dysautonomia—this is because there are very few specialists. But many of us do research online, print out research articles and take them to our local doctor as evidence for them to give us testing and/or prescribe the medications that have helped others. For instance, it might be possible for a local doctor to do a “poor man’s tilt table test” in their office to get a basic assessment on whether you have POTS, neurally mediated hypotension etc. This takes no equipment but a blood pressure machine. I had my local doctor do this and it is now in my medical records and provides a justification for prescribing medication.

Just to say, you are not alone in the problem of not having a dysautonomia specialist—there are very few in the world and many of us find ways to work around this, as described above.

[kisekis]

2 hours ago, Sushi said:

I don’t know if this is possible with a clinic in the US as, legally, doctors have to see you in person for the first visit. And, they would want to do testing. Can you tell us what your specific goals would be for an online consultation? As most treatments for dysautonomia involve medications, that is also likely to be a problem as doctors, at least in the US,  cannot prescribe medications without seeing you in person—except in some very specific circumstances.
 

My guess is that many if not most of us here work with our local doctors who are not specialists in dysautonomia—this is because there are very few specialists. But many of us do research online, print out research articles and take them to our local doctor as evidence for them to give us testing and/or prescribe the medications that have helped others. For instance, it might be possible for a local doctor to do a “poor man’s tilt table test” in their office to get a basic assessment on whether you have POTS, neurally mediated hypotension etc. This takes no equipment but a blood pressure machine. I had my local doctor do this and it is now in my medical records and provides a justification for prescribing medication.

Just to say, you are not alone in the problem of not having a dysautonomia specialist—there are very few in the world and many of us find ways to work around this, as described above.

So are you saying they arent telling the truth? Cause in their website they said it works, theyre experienced in it and can/have helped many patient, also from online consultation and give record review and detailed report. Thats why im asking if its worth it/trusted and wont have issue.

 

For more than 16 years im struggling to find doctor who can help, still no 1 acknowledge pots, mcas, eds, etc in my country(no matter how hard i try to tell them)also hard to find around near my country. ive been tortured and lost my life since 11 years old. And now im almost at dead end. So im desperate. I lost ideas and things are getting worse&worse eventhough i tried everything, my best.

 

What im trying is at least find knowledgeable/experienced specialist who can give advice/guidance through my health history&med record. What seem to be the cause, what method should i pursue, reference, recommendation for doctor, etc.

[Sushi]

19 minutes ago, kisekis said:

So are you saying they arent telling the truth? Cause in their website they said they experienced in it and can/have helped many patient, also from online consultation and give record review and detailed report.

She says on her site that she would need to review your medical records and work with a local doctor—so it looks like you would need to find a doctor who is willing to work with her. Telemedicine is great but requires a local doctor to carry out the specialist’s recommendations—that is why I was suggesting ways to get a local doctor to help with this.

25 minutes ago, kisekis said:

For more than 16 years im struggling to find doctor who can help, still no 1 acknowledge pots, mcas, eds, etc in my country and also hard to find around my country. And ive been tortured and lost my life since 11 years old. And now im almost at dead end. So im desperate. I lost ideas and things are getting worse&worse eventhough i tried everything, my best.

You are not alone in this. No matter what country patients live in, they usually have similar stories. It was my story too for many decades until I found a dysautonomia specialist. But even then, he could only deal with symptoms, not the root of them. I still have most all of the dysautonomia problems—though, from forums like this (as well as the doctor I had) I have learned practical tips that help to deal with them. Sadly, we are still a long way from cures.

[firewatcher]

Telemedicine is a growing trend. Dr. Blitshteyn is a legitimate expert in the field of dysautonomia, google her or go to PubMed and put her name in the search box. She routinely answers questions in the newsletter from this site. It seems like it might be a good option for those who cannot travel. Finding a local doctor to work with her will be the issue, but MD to MD can be more effective than patient to MD with the weird stuff we usually have. Can you call their office, explain the situation and ask for a discount?

[MomtoGiuliana]

To reiterate somewhat what has already been said, this physician is actually one of DINET's advisors; she is a leading expert on dysautonomia.  As others have also said, her phone consultation would rely on working with a doctor you are seeing in person.  I did consult with her once.  I had to send her all lab and study results and other records first.  I think a phone consultation may be helpful if you have a doctor willing to work with her.  Because there are few experts nationwide, her phone consultation fills in gaps, for patients too unwell to travel long distances to see a specialist.  She will make recommendations for tests and treatment but she will not treat/prescribe; that will be up to your doctor.