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kisekis

Crowdmed(med detective)or consultation online(doctor)?

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Does anyone know any experience/knowledge of crowdmed(medical detective)or other doctor online consultation service?

 

Im so desperate&lost cause the med system around me.(southeast asia. I need to find POTS, EDS, CFS, MCAS specialist. And connected diseases/syndromes, since i have symptoms. But theres none) :(

Problem is, im very far from the US. If at least theres a credible specialist online consultation where i can get advice/reference it would be good.(through my med history, if it match with the syndromes, what method i should pursue)

 

Or better if they can write to my doctor here so they will acknowledge.

 

I read about cardiologist sanjay gupta but i dont know if hes experienced/expertise in it?

 

My main issue is heart.(heart jumping out, hypersensitivity, intolerances)

Diagnosis: autoimmune(jo1 positive, pcna borderline), PAC sinus tachycardia, chronic tetany,  ibs,endometriosis(recently).

 

Suspicion: eds, autonomic issue, mcas, hormonal, gut issues, apnea.

 

I have many weird symptoms but didnt get detected/treated. Im disabled by it :(I get no help for >17 years, since around age 10-11(around first period)

 

Ive read about online doctor consultation but still couldnt decide/find which credible&more suited for my case.

 

Thanks to people who take the time to answer 

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@kisekis have you ever considered traveling out of country to be seen by a specialist? I have no experience with online consultations but imagine that a physical exam would be necessary for a true visitation. 

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7 hours ago, Pistol said:

 

@kisekis have you ever considered traveling out of country to be seen by a specialist? I have no experience with online consultations but imagine that a physical exam would be necessary for a true visitation. 

Thanks for replying.

I know but im desperate&lost. i try to find at least advice/guidance if my med history seem to match with the disease/to other disease, what method i should pursue for diagnosis/any reference.

I try to search in singapore and malaysia but still hard. I cant go too far away though. I dont know where? :(

Also travelling will trigger/increase my issue so its risky. But if it will work ill try my best. 

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Hi, I have no experience in those, but I was wondering how did you get those diagnoses you listed? If it was easy to get those diagnoses, I would guess those medical providers you saw are at least somewhat knowledge and can help you? I'm still having trouble getting any kind of useful diagnosis from my primary care over here.

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13 hours ago, kisekis said:

Does anyone know any experience/knowledge of crowdmed(medical detective)or other doctor online consultation service?

 

Im so desperate of the med system around me.(southeast asia. theres no POTS, EDS, CFS, MCAS specialist) :( But im very far from the US. If at least theres a credible online consultation where i can get helpful inputs from doctor it would be good.

 

I read about cardiologist sanjay gupta but i dont know if hes experienced/credible/expert?

 

My main issue is heart.(heart jumping out, hypersensitivity, intolerances)

Diagnosis: autoimmune(jo1 positive, pcna borderline), PAC sinus tachycardia, chronic tetany,  ibs,endometriosis(recently).

 

Suspicion: eds, autonomic issue, mcas, hormonal, gut issues, apnea.

 

I have many weird symptoms but didnt get detected/treated. Im disabled by it :(I get no help for >17 years, since around age 10-11(around first period)

 

Ive read about online doctor consultation but still couldnt decide/find which credible&more suited for my case.

 

Thanks for people who take the time to answer 

There is an organization called Dysautonomia International - maybe you'd be able to find a physician on their list.  If you can't find a specialist in your area I'd try to see an electrophysiologist (cardiologist specializing in heart rhythm).  They would generally know how to treat sinus tachycardia.  If you can find a good one and get them literature about dysautonomia they might be able to help.  I live in New York City.  That is the approach I took since there isn't a good specialist here either. 

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3 hours ago, WanderWonder said:

Hi, I have no experience in those, but I was wondering how did you get those diagnoses you listed? If it was easy to get those diagnoses, I would guess those medical providers you saw are at least somewhat knowledge and can help you? I'm still having trouble getting any kind of useful diagnosis from my primary care over here.

Where do you live? And which diagnosis? (I just realized i didnt explain it better and it might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. But theres none here)

My diagnosis of autoimmune is done through blood work(but its not pots antibody)cause theres only a few antibody available that can be tested.

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34 minutes ago, yogini said:

There is an organization called Dysautonomia International - maybe you'd be able to find a physician on their list.  If you can't find a specialist in your area I'd try to see an electrophysiologist (cardiologist specializing in heart rhythm).  They would generally know how to treat sinus tachycardia.  If you can find a good one and get them literature about dysautonomia they might be able to help.  I live in New York City.  That is the approach I took since there isn't a good specialist here either. 

Thank you for replying.

 

How come.. i thought US med system is the most advanced?

I just realized i didnt explain it better and might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. Cause i have symptoms. But theres none here.

 

Ive tried asking about pots here but no luck :(been to electrophysiologist. But they still couldnt find the cause.

 

anyway,

Ive check pots uk, dysautonomia international. But none listed here&it seems only doctor sanjay gupta is available for online consultation?

I read about doctor nicholas gall, he posted thing that match my case. But he didnt seem to accept online consultation :(

I might have to look it up more detail. Or email.

 

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36 minutes ago, kisekis said:

Where do you live? And which diagnosis? (I just realized i didnt explain it better and it might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. But theres none here)

My diagnosis of autoimmune is done through blood work(but its not pots antibody)cause theres only a few antibody available that can be tested.

I live in the US. In the US, healthcare isn't free. If people use insurance, the insurance companies have special rules to not spend unnecessary costs. By diagnoses, I couldn't get diagnosed with POTS, sleep apnea, acid reflux issues, allergies, etc. For example, instead of giving me allergy tests that are expensive, they prescribed me nasal sprays instead of testing to see if it gets better. So that was why I was surprised that your diagnoses list had that much, and thought that if someone was knowledgeable enough gave you the correct tests to diagnose you, they might be able to help.

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16 minutes ago, WanderWonder said:

I live in the US. In the US, healthcare isn't free. If people use insurance, the insurance companies have special rules to not spend unnecessary costs. By diagnoses, I couldn't get diagnosed with POTS, sleep apnea, acid reflux issues, allergies, etc. For example, instead of giving me allergy tests that are expensive, they prescribed me nasal sprays instead of testing to see if it gets better. So that was why I was surprised that your diagnoses list had that much, and thought that if someone was knowledgeable enough gave you the correct tests to diagnose you, they might be able to help.

That was a surprise cause i read the researchers and top hospital come from US. But i heard about the expensive cost :(

 

My current diagnosis are only. Autoimmune, PAC, sinus tachycardia, chronic tetany, endometriosis(my stomach is swollen and they found big cyst :( )

 

I have acid reflux too&many gut issues but i havent done endoscopy.(yet)

 

Allergy diagnosis from blood&skin prick. Sleep apnea, havent got diagnosis cause mine come randomly so its hard to diagnose. 

 

Anyway, the problem is the doctor doesnt acknowledge pots, mcas, eds, etc.

Since its still not very popular worldwide.

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I live in uk and have been to two of Dr Gupta health weekends . He is a cardiologist at York hospital .I was already referred to another cardio before I met Dr Gupta so I am not actually his patient . 
What I can tell you there are plenty of patients who really like him, I know this from a Uk POTS forum

I have spent some time  with him . He is sympathetic,  kind and listens . If you join his Facebook group he also does live chats where you can personally ask him questions . 

I hope this helps 

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3 hours ago, kisekis said:

Thank you for replying.

 

How come.. i thought US med system is the most advanced?

I just realized i didnt explain it better and might cause a misunderstanding. I actually want to find specialist in pots, mcas, and other connected issues. Cause i have symptoms. But theres none here.

 

Ive tried asking about pots here but no luck :(been to electrophysiologist. But they still couldnt find the cause.

 

anyway,

Ive check pots uk, dysautonomia international. But none listed here&it seems only doctor sanjay gupta is available for online consultation?

I read about doctor nicholas gall, he posted thing that match my case. But he didnt seem to accept online consultation :(

I might have to look it up more detail. Or email.

 

There are only a handful of doctors in the US who are experts in dysautonomia.  Many of us wind up working with our local doctors - who know a little or nothing at all - and reading literature to figure out which treatments to try.  

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31 minutes ago, Pistol said:

@dancer65 -thank you for giving this info for this member!!!!!

My pleasure! 
 

Dr Gupta also has a close association with Simon Smale a gastrentologist who is high up in his field. 
 

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3 hours ago, WanderWonder said:

I live in the US. In the US, healthcare isn't free. If people use insurance, the insurance companies have special rules to not spend unnecessary costs. By diagnoses, I couldn't get diagnosed with POTS, sleep apnea, acid reflux issues, allergies, etc. For example, instead of giving me allergy tests that are expensive, they prescribed me nasal sprays instead of testing to see if it gets better. So that was why I was surprised that your diagnoses list had that much, and thought that if someone was knowledgeable enough gave you the correct tests to diagnose you, they might be able to help.

Hi, apologies cause I know most of us have spent the last 5+ years looking into resources--and have you seen this http://www.dysautonomiainternational.org/page.php?ID=14

It should list by resources by country and state. We "happened" across the one we work with.  

 

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6 hours ago, dancer65 said:

I live in uk and have been to two of Dr Gupta health weekends . He is a cardiologist at York hospital .I was already referred to another cardio before I met Dr Gupta so I am not actually his patient . 
What I can tell you there are plenty of patients who really like him, I know this from a Uk POTS forum

I have spent some time  with him . He is sympathetic,  kind and listens . If you join his Facebook group he also does live chats where you can personally ask him questions . 

I hope this helps 

hello and thanks for the info.

I didnt know about the uk pots forum i try to google it but didnt find?  I couldnt find the fb group. Only this https://m.facebook.com/yorkcardiologist/ ?

Anyway. Im still confused if hes really expertise/high skill in pots issue?(and possibly eds, mcas which seem to be connected)im cornered&run out of ideas/choices though. Which leaves me desperate.

 

Do you have endometriosis and autoimmune? Thats the diagnosis i have too :( do you know about endometriosis cyst? Ive been trying to find a way to decrease it without surgery :(

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@SueMom
Thanks for the list of providers. I think I'm at the stage where I'm not 100% sure if I have it, or is able to make the symptoms better through other means (see my other thread). The providers are a few hours drive away from me, so doable. I'm not sure about the costs, and I'd have to look into getting different insurance that allows me to pick providers outside my insurance's hospital if it gets worse.

@kisekis

Idon't want to hijack your thread though, so that's enough about me! I hope you find a specialist that can provide you relief. It looks like

@dancer65

posted some experience - hopefully that is useful to you.

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He did a talk on POTS, the reason I went to his health conference . In my opinion he knows his stuff ! But as I say I am not his patient so I have not had a consultation with him . I did talk one to one with him and he gave me some very good advice . The link you posted is where he advertises his live chats


He is a cardiologist so as far as treating other issues I really don’t know , you would have to enquire. Usually in the UK you see different consultants for different complaints , that’s how I have been treated. However I do know Dr Gupta understands the connections 
 

Yes I do have autoimmune diseases and had to have hysterectomy due to endo , cysts and friboids so I really don’t know how to shrink endo cyst sorry 

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23 hours ago, p8d said:

I *believe* this clinic/dr does online consultations and works with local Drs http://www.dysautonomiaclinic.com/. Worth reaching out at least.

Please note that normally we do not allow the inclusion of any sort of commercial links in member posts.  However, DINET maintains a list of physicians, and sharing a link to doctors' websites in this vetted list is allowed on the forum.  Dr. Blitshteyn (website above) is a valued DINET advisor and is included in our DINET research, newsletters and physician database.  Dr. Blitshteyn is also prominently featured in our original documentary,, "Changes: Living with POTS"  To learn more about our Medical Advisors, please visit https://www.dinet.org/aboutus/advisors/   

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7 hours ago, MomtoGiuliana said:

Please note that normally we do not allow the inclusion of any sort of commercial links in member posts.  However, DINET maintains a list of physicians, and sharing a link to doctors' websites in this vetted list is allowed on the forum.  Dr. Blitshteyn (website above) is a valued DINET advisor and is included in our DINET research, newsletters and physician database.  Dr. Blitshteyn is also prominently featured in our original documentary,, "Changes: Living with POTS"  To learn more about our Medical Advisors, please visit https://www.dinet.org/aboutus/advisors/   

Conveniently, the first doctor on this list is the one I asked about in another thread last week. That seems to be an encouraging endorsement. 

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On 12/16/2019 at 10:23 PM, dancer65 said:

He did a talk on POTS, the reason I went to his health conference . In my opinion he knows his stuff ! But as I say I am not his patient so I have not had a consultation with him . I did talk one to one with him and he gave me some very good advice . The link you posted is where he advertises his live chats


He is a cardiologist so as far as treating other issues I really don’t know , you would have to enquire. Usually in the UK you see different consultants for different complaints , that’s how I have been treated. However I do know Dr Gupta understands the connections 
 

Yes I do have autoimmune diseases and had to have hysterectomy due to endo , cysts and friboids so I really don’t know how to shrink endo cyst sorry 

What safety precaution due to surgery? And anesthesia? Did you get issue?

 

@p8dthank you so much for the link. ive been searching by keywords pots doctor but couldnt find.

I have emailed them but havent got any reply though :(

 

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9 hours ago, kisekis said:

ive been searching by keywords pots doctor but couldnt find.

In your search for doctors, I suggest that you not use terms like POTS, MCAS etc. as these terms are not used in many countries. It might work better to just describe your symptoms.

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