kisekis

On 9/8/2021 at 12:23 AM, MomtoGiuliana said:

I looked on the facebook page.  It appears from what I read on there, that some patients are not receiving return e-mails in their inbox bc these messages are going to spam.  I would check spam and if no message there, try again to contact them, perhaps by phone or via facebook as well as through their website/e-mail.

Yeah i keep contacting them

On 9/7/2021 at 8:06 PM, sitcedar said:

Hopefully you find one! Wishing for your good health.

Thank you for your encouragement! i found a few neurologist who can do telehealth but i dont know which one is the best choice

also when i look up for their information the reputation not as goos as Dr. Blitshteyn

14 hours ago, MomtoGiuliana said:

I am sorry you have been unable to reach Dr. Blitshteyn, she is an active practitioner.

We do maintain a list of specialists, which may be helpful.

Physicians - Dysautonomia Information Network (DINET)

yeah and im not the only one who cant contact the clinic  on the dysautonomiaclinic facebook page some people also question that.

do you or anyone maybe know why/what happened?

Thank you for the list. 👍

Although i dont know, which neurologist accept telehealth.....? 😵 but ill try to look into it.☺️

Anybody knows neurologist who has expertise in POTS&willing to do teleconsultation?

(other than Dr. Blitshteyn, cause shes uncontactable now)

Thank you for anyone who reply.

Anyone knows/have experience with R-R interval test? (EMG neurology)

Did anyone have an abnormal result?  normal result?

Because i did SSR test but the result is normal eventhough my hands have excessive sweating.

Doctor said it usually come up abnormal for people who have trouble sweating not the other way around.

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.

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.

2 hours ago, Random-Symptom Man said:

@kisekis in response to your question :

My gastroinerologist was the first doc to propose Dysautonomia as the source or result of my GI and other issues. I didn’t/don’t have MCAS. my food sensitivities are only very low. My symptoms don’t change with diet. While there are foods that can trigger worse symptoms (really spicy, too much sugar and moldy cheeses), there is no food combination that makes my GI behave normally. I took notes for years and showed them to my GI guy. My endoscopy/colonoscopy was fine. he ruled out several other things, and Dysautonomia was one of the remaining options. He was the one who requested the sweat gland tests and TTT tests, which came back positive.

He says that a lot of people have autonomic dysfunction that effects their gut. He Also said that GI problems may be responsible for some cases of autonomic dysfunction that don’t have known causes. he and other doctors at Johns Hopkins have preliminarily results that say something like 50% of their Dysautonomia patients have significantly reduced symptoms if they can treat the GI symptoms. He admitted that the sample size is too small to say anything conclusively. He also said that most of the patients in this group come into their practice with GI as their main complaint. He wasn’t trying to oversell their hypothesis.

I see. What does it mean by "treating gi symptoms?" As in drugs, diets?

I have gi symptoms(and bad diet)since a child&before i got sick.

Its hard figuring out what exactly is the problem. And its more problematic if its from multiple causes.

Also some food do have stimulant chemicals in it. To me theres food which cause small/little issue but many food cause severe issue.

I have GI issue, autonomic issue, sensitivity/immunity issue. So i cant figure out which one cause it.

Has anyone ever asked this to doctor? Is this dysautonomia issue or mcas or vagus nerve or digestive?

It seems like people with pots/cfs often experience this?

Im puzzled.

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

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

6 hours ago, POTSius said:

If it is triggered by food and leads to symptoms that are not typical for an allergic response, MCAS does seem like something to explore. I have MCAS and am intolerant of many foods. Oral cromolyn (Gastrocrom) has helped this and other symptoms.

It is also possible the issue is due to something in the food, but in a non immune way. I think some people can have trouble with amines in food, sulfur, salicylates, etc and all of these could cause non allergic responses to food. Maybe there is a pattern in your problem foods?

 

But i thought mcas symptoms is similiar to allergic? Also i dont know how to check for it.

Yes i actually read about amine. I still try to figure out how to check for it.(try to eat it one by one and see which cause issue)i only check for MSG which i got bad reaction after i ingest it.(maybe due to glutamate or other thing?) Also got reaction from sugar/high carb, fatty food.

5 hours ago, Pistol said:

@kisekis - based on where you live: do you eat a lot of fish? Depending where the fish we eat comes from it can be filled with chemicals, heavy metals etc that can trigger allergies. 

No actually i dont really like fish. I like pastry, pasta, ice cream, etc. I used to eat a lot of them. But i avoid it when i realized it cause issue(sometimes i still cheat though but before i tested positive for autoimmune)

10 minutes ago, lieze said:

Kisekis mine might be neurological also not sure. I get these sensations as it starts like can be a dropping sensation or flushing sensation internal vibration, speeding up of heart rate, anxiousness, sometimes I will feel it hit my chest but whether it actually causes some shortness of breath or makes me feel like I need to catch my breath that can happen and pass or that can happen and I can get some chest tightness.  I can get some lightheaded dizziness vertigo fear etc. 

When I went over the symptoms I experience most with an allergist they said that did not sound like a typical allergy response. However it still scares me. 

I agree what confused me is it doesnt seem like typical allergy but i feel poisoned. I can clearly tell my body is acting up.

How long it usually happen after exposure to food? And how long it last?

Anyway since i have autoimmune and join the autoimmune community. People who got AI also got symptoms from eating some food. So i think it could be connected. Or maybe the hypersensitive nervous system. 

I have this too. Is this autonomic related issue? I remember reading about vagal modulation? Or something like that?

It seems my heart is hyper sensitive. Can act out from minimal exertion.

My muscle also hypersensitive i wonder if it connected...

I also got cold sweaty hands and feet when i feel sick.

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.

I have this too and since >15 years ago no one can tell why ??

doctor here say its all in my head but it isnt. I have ecg handheld monitor and it shows clear difference.

What symptoms you get from food though? I got heart palpitation issue really bad. But neurological too like adrenaline rush or something i feel jittery and sometimes stomach issues, sometimes sleepy. Pots symptoms. 

I experiment eating MSG 1/4 half a spoon yesterday and i get the attack too. And from sweet food, fatty food, cake bread, sweet potatoes, beans, etc.

I dont get bad attack only from boiled vegetable so thats what i eat almost everyday but i hate it.

On 12/13/2019 at 1:57 AM, WanderWonder said:

Interestingly someone says they think got PoTs from this. My PoTs symptoms happened about the same time, and it's worse on days I don't get good sleep.

https://patient.info/forums/discuss/devastatingly-swollen-turbinates-641087

I search your post from your reply to my thread. Ive had this my whole life.(its really bad) When i was a kid i also get episode of nose bleed. i also have immune problem, gut issue. So its all connected. Many of my family member have the issue too.

I read that nose block issue can also come due to histamine/mcas issue and got issue. I seem to feel it too. When i eat something/something bad it exacerbate it.

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.

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.

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. 

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 

15 hours ago, misseb said:

I have H-EDS, POTS, GI probs and MCAS and a whole load of other EDS things. The EDS is the cause of the POTS I have been told by my autonomic specialist. The collagen defect has caused both nerve damage and vein damage in my body leading to POTS. EDS collagen defect manifests itself differently in each person, so some may have EDS but not POTS, but then might have others things. 

Nerve damage by eds, how? 

20 minutes ago, dancer65 said:

My cardiologist said he thought my hypermobility was contributing to my POTS along with my autoimmune issues and CFS /ME . 

All I have read and heard says EDS often goes with POTS . In my opinion there seems to a lot if patients with both ! 

Interesting i got positive low ANA test. Ive seen other people with pots got low ANA test.

If collagen issues caused stretchy, fragile skin, easy bruising. its likely possible it can caused stretchy blood vessel 😕

How many of you have pots and also eds?(the new criteria not the old. hypermobility, joint pain, elastic skin, muscle issues, athropic scars, vision problems, spine, bleeding bruisings, tmj, etc which all caused by collagen issues eds)

What im confused about its been taught that eds can caused pots(stretchy blood vessel) but now they said eds cant caused pots?

The NHS website still write eds can cause pots but the official new criteria of EDS said no correlation between eds causing pots.

so im confused??

2 hours ago, Pistol said:

@kisekis - there really is no standard for IV fluids that I know of. My specialist ordered 1 l over 2 hours once a week. That is beneficial for many, just in my case it was not enough. There are members on this forum that receive IV fluids and all the orders are different. One member gets weekly infusions, another member gets them every other day and one member even gets them daily. In m case I now get weekly infusions. 

I know. everyone is different. maybe it depends on the condition, how severe it is, hows the blood volume(unfortunately cant test for it)

I just wonder what dosage usually prescribe that i can try to see if i can improve with it. But it seems tricky.

Didnt fluids get off the system in only some hours? If one get saline only a day a week wouldnt the remaining 5 days they revert back?

I notice first you said 1 L over 2 hours and then 1 L over 6-8 hours. Doesnt that mean you still get 1L per day? (Sorry if i dont get this )