Dr. in Texas denied my referral.

[CallieAndToby]

So I was referred by my cardiologist to a dysauonomic doctor in Texas. They called me up and said after reviewing my records and told me I don't have dysautonomia. I was quite offended. I've had tilt table tests and been diagnosed by 2 autonomic specialists and my neurologist. Also, I'm very very sick, my blood pressure is way too low and after 5 minutes of standing I get very ill. I have huge adrenaline drops that won't stop for months. HR upon standing is 140. I have no idea what these people are talking about. And Vanderbilt hasn't even reviewed my records, it's been 4 months. I need help now. I'm having autonomic seizures......... etc. Not sure what to do. I don't know why this office told me that!? 

[JimL]

Could be they don't want you as a patient. IDK. There are good doctors out there, but there are times I feel like if I put on a white lab coat, got a script pad and used WebMD, I'd be better than some of the one's I've been to, and I am kind of serious. 

[Delta]

3 hours ago, CallieAndToby22 said:

So I was referred by my cardiologist to a dysauonomic doctor in Texas. They called me up and said after reviewing my records and told me I don't have dysautonomia. 

@CallieAndToby22

This is bizarre. How can they determine that without even seeing you, either in person or even just via a phone or on-line consultation?! It's so bizarre, I almost wonder if they got your records mixed up with someone else's. Can you contact the cardiologist who referred you, explain what happened and ask them to either 1) Intervene; or 2) refer you to another dys specialist? I am sorry you are having to deal with that.

[HCD77]

I wonder if it was my dysautonomia dr in Texas. He wouldn’t diagnose me with POTS because my tilt was off by 3 bpm. My heart rate only went up 27 bpm instead of 30 !! PM me I would like to know if it was the same dr. I’m so sorry this happened to you. I think with all the new Covid 19 longhaulers with POTS these specialist  are going to be overwhelmed. 

[CallieAndToby]

16 hours ago, HCD77 said:

I wonder if it was my dysautonomia dr in Texas. He wouldn’t diagnose me with POTS because my tilt was off by 3 bpm. My heart rate only went up 27 bpm instead of 30 !! PM me I would like to know if it was the same dr. I’m so sorry this happened to you. I think with all the new Covid 19 longhaulers with POTS these specialist  are going to be overwhelmed. 

Thanks. 

[CallieAndToby]

I just talked to my cancer doctor. Even he at Shands is very confused about my case. There is a lot going on and he thinks there is something genetic holding it all together. He straight up said, "whatever syndrome you have is not yet written in the text books". And he told me doctors just know what is written in the text books and they can't cross different pages and put things together. I think this Dr. did not want to deal with my case, but having the secretary tell me that I don't have autonomic dysfunction was extremely rude and UNTRUE. 

[CallieAndToby]

On 12/8/2020 at 9:24 AM, JimL said:

Could be they don't want you as a patient. IDK. There are good doctors out there, but there are times I feel like if I put on a white lab coat, got a script pad and used WebMD, I'd be better than some of the one's I've been to, and I am kind of serious. 

They didn't want me as a patient. But be honest and don't have the secretary (rude one at that) tell me I don't even have dysautonomia. One look at my tilt table test and it's quite obvious. 

[merkat30]

Ooh my that horrid sounds very much like treatment I have had in the UK.  Do hope u get decent doctor soon so unfair I also having autonomic seizures and took 2week for doctor even say to there secretary's they get back to me it scary and just not on really .

[KiminOrlando]

I think they reject us when they don't know how to help us. The secretary that told you that likely didn't have the authority or the knowledge base to make that declaration. She probably just said something to get you off the phone. Some doctors even look for a specific kind of dysautonomia or they won't treat you. Some won't treat you if there are other medical issues complicating dysautonomia. You were likely given an excuse, not a medical diagnosis. This is part of the process of weeding out the wrong doctors. This one may be good, but not the right one for you. Keep looking. You will find the one interested in your case.

[CallieAndToby]

8 hours ago, KiminOrlando said:

I think they reject us when they don't know how to help us. The secretary that told you that likely didn't have the authority or the knowledge base to make that declaration. She probably just said something to get you off the phone. Some doctors even look for a specific kind of dysautonomia or they won't treat you. Some won't treat you if there are other medical issues complicating dysautonomia. You were likely given an excuse, not a medical diagnosis. This is part of the process of weeding out the wrong doctors. This one may be good, but not the right one for you. Keep looking. You will find the one interested in your case.

Thanks. Yea, I think doctors should be honest. The urologist I saw told me the medication that helped was placebo. My oncologist today denied that MPN's cause fatigue and it's the number 1 symptom. I wish they would just say "I don't know." 

[KiminOrlando]

Mine says I don't know a lot. I would send you to him but he is retired and only sees 3 patients for research purposes. This doctor taught me that good doctors aren't afraid to say they don't know. I hope you find someone like that.

[Pistol]

@CallieAndToby22 @KiminOrlando - I had to fire several ignorant docs that told me : "You are just gonna keep fainting, there is nothing to be done, it is the common faint you have", " the symptoms you have clearly stem from hysteria", " you cannot tell when you have high BP, therefore you make this up" and, my favorite: " you have a very vivid imagination". And there are even more ... 😬

I had two docs during those years that were my rock: my PCP, that did not know beans about POTS but was willing to stay the course and help me, symptom by symptom: and my current cardiologist ( not my autonomic specialist ) who - in the very beginning - admitted that he does not know anything about POTS and therefore does not feel comfortable to treat me but supported an autonomic specialists referral. Since then he has really informed himself about POTS and now treats several other POTS patients. 

I believe that the common denominator in this is that most docs would have to rethink their entire approach to medicine in order to admit that dysautonomia is a real thing. Forever they were under the impression that unexplainable symptoms in the absence of abnormal testing are psychosomatic. And now, suddenly, there is a whole new way to look at this, that explains the physical mechanism behind these symptoms and that they are a real disorder. There is so much to know about dysautonomia that belies what they have been practicing that they would rather deny this disease than being open to new findings. 

A good physician follows the oath that - most importantly - states DO NO HARM. Not taking a patient serious, ignoring symptoms because they do not understand them and dismissing seriously ill patients is clearly a breech of this oath. We just have to keep looking for our prince. I found mine, I have a wonderful team of docs that all work with me and for me and that NEVER ignore any problems I have. But it took a long time to get them, so my best advice is: keep looking. 

15 hours ago, CallieAndToby22 said:

I just talked to my cancer doctor. Even he at Shands is very confused about my case. There is a lot going on and he thinks there is something genetic holding it all together. He straight up said, "whatever syndrome you have is not yet written in the text books". And he told me doctors just know what is written in the text books and they can't cross different pages and put things together. I think this Dr. did not want to deal with my case, but having the secretary tell me that I don't have autonomic dysfunction was extremely rude and UNTRUE. 

I think he is right by saying this, and it may be his way of telling you that he does not know how to help you. His responsibility then would be to refer you to someone who can. I would call the office and ask to talk to the person that said you don;t have dysautonomia and confront this person. If they make a note in your record stating that you do not have dysautonomia it can add confusion and also support other bad docs that want to believe that dysautonomia does not exist. Ask what evidence brought them to this conslusion, even if you have to request another appointment. Do not just simply take it and have them write you an untrue - and potentially harmful - report that states you do not have what you clearly have. 

I am sorry this happened to you again!

[Rexie]

An older, wiser Texas native once told me a long time ago: “You better sit low in the saddle, you’re in for a long, slow ride”. 

You might have hit a definitional snag in your quest for better health. The sciences and medicine are getting very specific now as to how they classify different but similar diseases and disorders, and how they train and deploy their professionals. Those making these decisions also impact patient care – our care – through their policies, stated and assumed. 

For example (not saying you do), you could be experiencing all the symptoms of dysautonomia but have chronic regional pain syndrome (CRPS diffuse, type 2 – confirmed nerve damage). Couple this to the fact that diagnostic criteria for CRPS is purely clinical (there are no specific diagnostic tests for CRPS which can reliably confirm or exclude the diagnosis) and there is a problem – what to do with you. And furthermore, does a practitioner even want to label you with such a weird and challenging diagnosis? CRPS is associated with autonomic, trophic, and motor function changes. In some neurology departments, a dysautonomia specialist may not wish to include you as a patient (for your own good – CRPS is not their “thing” and you might be bettered served elsewhere). Technically, an autonomic specialist might be the umbrella under which you could shelter. Some might take you on, some may not be up to the task (but they’d never give that as a reason – it’s just human nature). Some neurology depts. might actually have CRPS specialists, and in that case it is all good, except for the fact there no universal great treatments for CRPS. 

The point is – there are a number of causes for autonomic problems and not all are included in the work that dysautonomia specialists undertake within an increasingly narrowed classification in some circles. And, as others have mentioned, neurologists in general are increasing overwhelmed by COVID patients in crisis. 

But in the end, here we all are, a diverse group of humans with special needs and issues. Some have a specific diagnosis, some don’t and may never. Whatever the case, the goal is to stay alive, with or without help from professionals. Also, to be a little bit happy along the way. 

Like you, I have frequent trouble with low blood pressure. And it is scary and dangerous sometimes – here one minute, gone the next. Ideally you should have some help keeping the blood pressure up or that helps you function at lower blood pressure levels (4,600 mg pressed powder ashwagandha 2-4 times per day does this for me – at 70/43 I’m still doing chores but feel wonky. It also helps the over-excited parasympathetic nervous system eliminating the seizure-like sensation of frizzled nerves). For a low blood pressure fix you might turn to a trusted PCP, your cardiologist, or an endocrinologist. Hydrocortisone (or prednisone) is a quick and effective fix for low blood pressure crashes. Or you might treat yourself with herbs, OTC meds, or find a good, well-trained, alternative health care professional/practitioner. Back at home though, although you may have learned something interesting or been given something that actually works while you were out questing after and chatting up various professionals, so much of how you feel and perform is up to you. Sure I have to be careful and take more care as things change throughout the day, often minute-by-minute, but it’s worth it to me. Everything we do, everything we eat or drink, everything we take, prescribed or not, the many things we apply to skin or inhale, is going to affect each of us differently. You need to find those things that work for you, including developing some sort of coping method (a spiritual program, a psychological approach, etc. – some sort of sustaining belief system). Pain causes the parasympathetic nervous system to become overexcited which can lead to dangerous drops in blood pressure. Where possible and practical I like to limit the sensation of pain. I also have interstitial cystitis and manage that through diet and supplements. If foods, drinks, prescription and non-prescription drugs, herbs, topicals, inhalants, people, doctors, and activities don’t work for you, you need to eliminate them and move on. Kind of like getting a new saddle for your horse or a new horse entirely.  

Wishing you more peace and joy! 

[Pistol]

26 minutes ago, Rexie said:

Pain causes the parasympathetic nervous system to become overexcited which can lead to dangerous drops in blood pressure.

Do you mean this happens only in dysautonomia patients? Normally experiencing pain causes the BP to go UP. 

[Rexie]

Pistol, for me, acute pain, as in kidney stones, a torn muscle, the beginning of an interstitial cystitis flair, jacks blood pressure up briefly (record high being 137 systolic; heart rate 105-110 max). However, continuing pain from these sources or CRPS makes my blood pressure fall and stay there without a little help. In general, I do best calming the parasympathetic system. Everyone is different. I should have made my statement you quoted less general and more specific to me. The literature is resplendent in examples for both types of responses to pain. I've always had, since childhood, an often paradoxical reaction to certain drugs and conditions. A nurse use to pass out valium in the dorm at music school at solo concert time - zippity-doo-dah for me (not calming).  

 

 

[CallieAndToby]

Thanks for responses.

[JimL]

23 minutes ago, CallieAndToby22 said:

Thanks for responses.

I'm 58 and I've seen a decline in medicine. Some of it is incompetency and some indifference. Some doctors want to punch a clock and work it like a caseworker and some, if they can't find out why blame the patient. I went to Hellmann's and after my experience there, if that doc was on fire I wouldn't pee on her to put it out. She was the worst I've had so far, well, maybe second worst. The GP I have at Honor is like Wally from Dilbert. I am done. 

[RecipeForDisaster]

Hahaha "Hellmann's"!! I love it. They didn’t want to see me, so I don’t have the greatest opinion of them.

[Rexie]

Seek long enough and you can have some truly Kafkaesque experiences...

Be of good courage! 

[CallieAndToby]

On 12/11/2020 at 9:02 PM, Rexie said:

Seek long enough and you can have some truly Kafkaesque experiences...

Be of good courage! 

Um, I don't know how to say this, but I've been seeing doctors for 30 years, all over, since I was little and I'm only 35. I've been treated like dirt most of the time b/c I'm a young female. I've taken a lot of psych meds only for my psychiatrist of 10 years to conclude it wasn't psychiatric which I'd been telling them the entire time. I've been poked and prodded like a lab rat for 30 years. I've been to Mayo Clinic 4 times. And they did nothing. Got labeled with IC in my early 20's, recently saw a urologist and he said I was emptying all the way, although I did not feel empty at all yet full, and thus my claims that rapaflo is the only medication that helped are "placebo"; my bladder is a nightmare, painful bladder syndrome is the 3rd most painful disease on the planet and they do nothing. Then I got diagnosed with dysautonomia based off of 2 tilt table tests, but they never really knew what type of autonomic dysfunction I have, then this guy in Texas tells me I don't have it and denies my referral. Then this year I was diagnosed with chronic blood cancer which I've probably had since age 17 (extreme itching, bone pain, raised platelets, and fatigue)......... I've seen many oncologists now and they've all been rude and nasty. My oncologist in Florida, just dropped me as a patient on a telemedicine appt where my mother and I were present. AT this point I have chosen not to see any more doctors as they find out it's a complex case, somehow it's all connected, and when they can't help me they just tell me I need to see a psychiatrist. That's the smallest summary I can give you of my medical journey. 

[KiminOrlando]

Have they looked at your Pudendal nerve? It is part of the autonomic nervous system. That might be part of the IC stuff and ties in with Dysautonomia. I have no idea who to recommend. A neuro? A urologist? Is there such a thing as a neuro-urologist?

[Rexie]

For interstitial cystitis I watch my diet and like Prelief (calcium glycerophosphate) before coffee, other drinks (especially acidic ones), and certain foods. I recently added CystoProtek, a multi-agent dietary supplement formulated to help heal the bladder wall. Even one gel capsule per day has worked wonders coupled with the other things I take to calm the parasympathetic nervous system. I hope the moderators will leave these standard brand name products in this post since they are widely used by interstitial cystitis patients and recommended by their urologists. 
I just added a low dose of stimulant to my personal herbal response and treatment of CRPS – phenylephrine (found in some decongestants). Low plasma norepinephrine and metanephrine concentrations are often found in patients with chronic pain. I feel surprisingly and joyfully almost normal. It is awesome! I’m 68 and have had a time of it in life (Lyme disease for 161/2 years; herpes simplex I encephalitis in 2012; and autonomic issues since 2016; and now a diagnosis of CRPS). The stimulant helps keep blood pressure up and reduces fatigue. I do have a B.S. in chemistry and a genius level IQ, so research is fairly easy for me – hence the self-treatment which has been a life saver. I also pray a lot and get lead to some great solutions to issues. 
A friend of mine (aged 76) with EDS now has a physiatrist who has undertaken to help her with chronic pain post pelvic bone fractures and is pleased with this alternative to pain management clinics. Perhaps one might help you. I have an appt. in Jan. with both a new PCP who actually knows something about CRPS and is herb friendly, as well as my UTSW-Dallas autonomic nervous system specialist, so I will have continued medical support. Perhaps you should concentrate on your cancer, blood pressure, and pain issues from interstitial cystitis and see how the rest of yourself might come into harmony. It’s all interconnected. 
Divine Love has always met every human need. ‘Tis the season. 
Love is universal in its adaptations and bestowals, so I know you will find just what you need. Dust off and keep seeking… 
 

[Pistol]

23 minutes ago, Rexie said:

I recently added CystoProtek, a multi-agent dietary supplement formulated to help heal the bladder wall.

Very interesting @Rexie ! I have IC with all the fixings, including pain. My urologist said that since bladder instillation did not help there is nothing more to try. I will definitely look that product up! 

@CallieAndToby22 - have you ever tried bladder training? That can help with the spasms. 

[yogini]

On 12/8/2020 at 7:01 AM, CallieAndToby22 said:

So I was referred by my cardiologist to a dysauonomic doctor in Texas. They called me up and said after reviewing my records and told me I don't have dysautonomia. I was quite offended. I've had tilt table tests and been diagnosed by 2 autonomic specialists and my neurologist. Also, I'm very very sick, my blood pressure is way too low and after 5 minutes of standing I get very ill. I have huge adrenaline drops that won't stop for months. HR upon standing is 140. I have no idea what these people are talking about. And Vanderbilt hasn't even reviewed my records, it's been 4 months. I need help now. I'm having autonomic seizures......... etc. Not sure what to do. I don't know why this office told me that!? 

I am so sorry you are going through this, but I would say that your diagnosis is not wrapped up in any one doctor.  A person who hasn't examined you isn't in a position to give you a diagnosis.   So rather than getting offended. I would take it as a reply from the doctor that he or she doesn't have the skillset to be ale to help you.  It is much better that they told you up front, rather than taking up your time and energy.  

[Rexie]

For IC there is now prescription Elmiron my urologist was excited about. My insurance covered it and CVS had it but not knowing what it would do to me (how it works to heal the bladder wall) I got it but haven't tried it. My guy retired and I haven't been back to query the replacement. I have autoantibodies (ANA and to striated muscles) and am so drug sensitive new stuff is sometimes scary. The Prelief, diet, and CystoProtek seem enough for a pain-free bladder for me. Lots of new stuff coming down the pike for all kinds of things - sweet!