I was diagnosed in 1980 with a "mid-systolic click", later to be re-dubbed mitral valve prolapse. I have had symptoms for years of rapid heart beat,and a "wooshing" feeling in my chest. This really became bothersome around 1988, and I sought the advice of a cardiologist who performed a sonogram of my heart and had again reconfirmed my initial diagnoses of mitral valve prolapse. He suggested during any invasive procedures I be treated with anibiotics. Well, the years went by and not much change in symptoms. I am now 36 and have three children and a husband who works out of town several days a week. One of my questions is do stressful situations exacerbate the mysterious ailment? About 3 years ago I was having "spells where I felt my heart who almost stop for a beat or two then the "woosh" would occur. I saw a cardiologist that was on my HMO plan and I wore a monitor for 2 weeks and it recorded nothing significant because he said it was only recording heart rythms, not valve problems. He then scheduled my for a sonogram of my heat and found I had mitral valve regurge. I don't mean to sound completely in the dark, but I was in effect told nothing. I did explain that "wooshing" feeling I get, but that's about all. The doctor told me the only thing that could make my condition worse would be a strep infection. Another question I have is. If you do have strep does that automatically affect your heart, and I also tested positive for strep B when I was pregnant. Is that the same as "regular" strep that gives you a sore throat? It just seems lately, over the last few years I have unexplained symptoms that my docor says not to worry about. Also I was bulimic for 11 years and I've been told that can also damage your heart. I am no longer bulimic thank God, and have ben free and clear from that for about 7 years. I know I've thrown alot of "stuff" at you, but I've dicussed this with my doctor, and he seemed to think it was nerves and prescribed and anti-anxiety pill. I would like some answers that make sense to me and don't discount what I know to be true symptoms......of what I don't know. Any advice you could give me would be so appreciated. Yes, by the way I searced the other sights and read quite a few articles in the archives. Thank you for taking the time to read this and respond. Gratefully, Melissa
Follow Ups:
Re: mitral valve prolapse
Posted by Walt Stoll on February 24, 1999 at 12:48:23:
In Reply to: mitral valve prolapse posted by melissa on February 23, 1999 at 18:03:12:
Dear Melissa,
There is a WORLD of difference between "mitral valve regurgitation" (the one associated with strep group "A" infection) and what is now termed MVP. The first is dangerous and the latter is totally without symptoms or danger.
By the way, you "woosh" is due to PVCs (premature ventricular contractions) that SHOULD have been picked by by your "Holter Monitor".
ANY doc who tells you that you have MVP and in the same session tells you that you can only be damaged further by a strep infection (only group "A") either has had a miscommunication with you or is too ignorant for you to continue seeing.
If I were you, I would be on my way to the bookstore or library to get a copy of "Mind as Healer, Mind as Slayer". You can get it from home via amazon.com
Once you have read THAT, if you still have questions, write aqain.
Walt
Follow Ups:
education and dysautonomia
Posted by Harcels on February 24, 1999 at 20:08:02:
In Reply to: Re: mitral valve prolapse posted by Walt Stoll on February 24, 1999 at 12:48:23:
Dr. Stoll: Has anyone done research connecting behavior to dysautonomia (other than Lyn Frederickson in her book)? I'm concerned about the impact on children and teachers when behavior is disruptive and no remediation seems to work for long. Often the percentage of teacher time controlling the child's behavior is cited as the justification for referral to a special education pullout program or home schooling, with the special ed staff calling the behavior "emotional disturbance." If 20% of the population has the recessive gene for dysautonomia, as Lyn says, under what diagnosis is public education placing our dysautonomic children? School administrators seem to either blame the children for misbehaving or the teachers for misreferring them--is it poosible that teachers and administrators really are trying everything they know, but dysautonomia is not known to them or their special ed staff? Any classroom is a social system that denigrates the "anti-social" children, and education reform is forcing teachers to assume responsibility for all children's behavior and learning. As more special ed referrals are returned to classrooms and more teachers are fired for not getting enough children to learn enough material, how much pressure will fall on our dysautonomic children and their parents? Has any researcher explored this connection or how information might be given to our public schools and to parents of dysautonomic children so that they all have the ability to manage the child at a level relative to physical and psychosocial development? I'd appreciate any thoughts you have about these questions. I know that the literature is spread across many fields of study and that the math is still in development for statistical control of dynamic reciprocal causality in structural equation modeling/path analysis; in other words, we don't have the tools we need to really study dysautonomia and the interaction of its physical-behavioral factors, but it looks like we haven't even started to assess what we need to know and how we might get that information. Is there an information clearinghouse that could compile and post research on the Internet, perhaps helping researchers and patients navigate the knowledge from different fields? Please let me know your thoughts. Thank you so much for your help!
Follow Ups:
Re: education and dysautonomia
Posted by Walt Stoll on February 25, 1999 at 10:53:44:
In Reply to: education and dysautonomia posted by Harcels on February 24, 1999 at 20:08:02:
Dear Harcels,
Thanks for the thoughts!
The causes of, and solutions to, these problems have been reported in the world literature for at least 20 years. I have a chapter, with references, on this subject in my book (look at page 62).
A good resource for your questions is Alexander Schauss, PhD. Also, ask your veterinarian about the "stable-criminal syndrome".
I appreciate your bringing this up because it gave me another chance to urge people to look at the evidence.
Walt
Follow Ups:
Re: education and dysautonomia
Posted by Harcels on February 28, 1999 at 20:24:41:
In Reply to: Re: education and dysautonomia posted by Walt Stoll on February 25, 1999 at 10:53:44:
Dr. Stoll: Thank you for responding. If a policymaker in special education programs were considering using MVP as an initial diagnostic marker for children referred for "emotional disturbance," would that be appropriate? Would it be appropriate as one of a set of physical and behavioral markers? Since MVP seems to indicate low blood volume or irregular blood flow, opening the door to many possible conditions and diagnoses, can it tell us enough to be worthwhile as a marker? I'm interested in how public education and public health institutions might screen for dysautonomia in a simple, inexpensive way, as psychiatrists screen for thyroid disorders by ordering a blood test for patients presenting depression. The health and education of our children is important, and I'd like to make the diagnosis of dysautonomia available to all children and their parents at all socioeconomic levels. Current reforms in special education programs have opened the door for new policies. If the information were available, would there be an adequate population base to advocate for change? The same customer base could demand better research and development from medical and pharmceutical companies. Is there any way to demonstrate a population base, including numbers and the human stories that motivate policymakers, without causing risks to confidentiality and without fueling the idea that dysautonomia might predict criminal behavior, making it a justification for discrimination? If these children may wind up under a dysautonomia label that is as damaging to their futures as "emotionally disturbed," is it worthwhile to address their health issues through public policy, or would a private nonprofit/for-profit strategy be better? Since dysautonomia requires a health management strategy that tends to place most individuals in the lowest risk category on health insurance actuarial tables, would dysautonomia be attractive to the HMO system and to employers? Please share your judgment based on your experiences. The advice I've heard from others is that no one can make any money with dysautonomia as a specialization, and that policymakers can't be bothered with the woes of nerdy kids who just can't compete in the classroom. I think 20% of the national population is a viable base for advocacy and customer service; what do you think? Thanks for your time.
Follow Ups:
Re: education and dysautonomia (lordy, lordy)
Posted by Walt Stoll on March 01, 1999 at 11:49:31:
In Reply to: Re: education and dysautonomia posted by Harcels on February 28, 1999 at 20:24:41:
WOW! Harcels. Wonderful thinking!
First, I don't think that MVP will ever be a "marker" for anything. Presently it is being used as an excuse for total body symptoms that the simplistic, conventional paradigm has no explanation for. It is a way to "get the patient out of my face".
However, there ARE ways to find those kids with early dysautonomia. Unfortunately, they are based on Hans Selye, MD's work and the lab techniques are still "experimental" and expensive.
Finally, it is not enough to do the tests, you need educated and knowledgable physicians who know enough to interpret the results AND to know enough as to what to do about them.
So long as a LOT more money can be made treating the consequences of "unrecognized dysautonomia", than diagnosing it & doing the education needed to reverse it via healthy lifestyle, the conventional medical monopoly will not be interested. Not only that but they will actively revoke the licenses of those docs who care enough to want to help their patients with this information.
Most physicians only recognize dysautonomia when it is terminal. It is the earliest stages that are the most important so far as improving the quality of life of those with that tendency.
At this point, the only thing I know is to have the people with the problem learn enough to be willing to help themselves reverse it. Only those with sufficient motivation and socioeconomic resources to do that even have that opportunity.
My friend Dr. Don Read and & I are currently in the process of writing a college textbook about the Ethics & Morality of Health Education. We believe that it is the Health Educator that is pivotal in educating the public to bypass the obstruction of the monopoly so as to reach the health-care system of the 21st century. The 20th century was about the disease-care system.
Perhaps, between the both of us we can come up with something practical? Talk at me.
Namaste` Walt
Follow Ups:
mitral valve prolapse
Posted by Marianne Yates on March 01, 1999 at 23:54:05:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Walt Stoll on March 01, 1999 at 11:49:31:
I work as a Perfusion Technician in Australia and yesterday one of the cardiac surgeons that I work with suggested that I could have MVP. I have chest pains, shortness of breath, irregular heartbeat (feels like I am skipping a beat or two and then beats quite rapidly, when lying down my pulse rate often goes up to 120 beats per minute). I am 165cm tall and weigh 53kg.
My boyfriend is a cardiac scrub nurse and he seems to think that I would be a lot sicker if I had MVP. Is this true? Are all patients with MVP quite sick or does he need to revise his cardiothoracic knowledge?
Thank You
Marianne
Follow Ups:
Re: mitral valve prolapse (Worthless Diagnosis)
Posted by Walt Stoll on March 02, 1999 at 11:21:50:
In Reply to: mitral valve prolapse posted by Marianne Yates on March 01, 1999 at 23:54:05:
Hi, Marianne.
MVP causes NO symptoms in ANYONE. Within 10 years no one will make this diagnosis any more & will (hopefully) be embarassed that they ever did.
One could go in & surgically correct the slight leakage associated with this probably normal varient and all of the symptoms would still be there. NONE of the symptoms are due to the valve but it is the symptoms that lead the physician to keep looking until there is SOMETHING s/he can pin them on & send the patient away with a "name".
Take the time to go to the homepage of this 'site AND the archives. It will take you several hours but you will begin to have an appreciattion as to how to get rid of your symptoms & put this FAD diagnosis behind you.
THEN, as you get well, I hope you will share your experiences with the BB so others saddled with this worthless diagnosis will get well as well.
Walt
Re: education and dysautonomia (lordy, lordy)
Posted by Harcels on March 06, 1999 at 04:06:29:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Walt Stoll on March 01, 1999 at 11:49:31:
Dr. Stoll: If we were interested in creating a nonprofit information clearinghouse to collect data to demonstrate a customer/advocacy base, to provide inservice training to health and education professionals, and to facilitate literature surveys and human sujects research, we might get some help from a nonprofit incubator, a nonprofit organization serving as an organizational umbrella to allow other nonprofits to grow. Most of these umbrellas provide services such as sponsored Internet sites, 800#s, state and national advocacy, accounting, and even cash flow for reimbursement grants. To start a nonprofit organization as an incorporated 501(c)(3), we would need a Board of Directors and a Charter (business plan). We might want to copy and extend the existing model of the national information clearinghouses in education; they specialize in subject areas, compile new literature and produce research "digests," provide information by Internet and mailings, and do outreach. In other words, they create a link between the research community and the practitioner community. We would need a third community of patients and their families. Such an organization could also collect information from patients and solicit their participation in clinical trials and behavioral studies as appropriate. In this way, patients' confidentiality would be preserved, and they would still get the information and maybe help generate more information through studies and support groups. Since learning communities are the rage in every sector, such a design should be competitive for grants if a service population can be demonstrated. Is this a fair idea to get started? As any nonprofit grows, it naturally attracts the attention of the for-profit sector, so eventually someone should be interested in a "cure" for dysautonomia. In any case, some pharmaceutical companies should follow up on Susan Lindquist's research on unfolded proteins using yeast cells; perhaps dysautonomia does not derive from a regressive gene but from excess prions or prions under excessive chemical and bacterial duress. It would be great if all of the literature were compiled for easy digestion. Please let me know your thoughts. Thanks!
Follow Ups:
Re: education and dysautonomia (lordy, lordy)
Posted by Denise Wyrick on March 06, 1999 at 22:33:11:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Harcels on March 06, 1999 at 04:06:29:
Walt, there is no doubt that you have been ahead of your times especially when you were living in KY... But the good news is that perhaps some people will gradually begin to see the light. You and Harcels definitely need to put your heads together.
I am trained as a Family Therapist but have stopped practicing due to a variety of reasons. My opinion is that the standard practices for the physical and mental health treatment for children and their families is missing the boat in many ways. The old ways just are not working. It is refreshing to me to know that conversations like this are happening! Keep talking. The beauty of what you are saying is that it would mean a world where serious emotional and physical problems would be prevented and rather than treated. I like it!
Namaste,
Denise
Follow Ups:
Re: education and dysautonomia (Anyone on the BB with expertise?)
Posted by Walt Stoll on March 07, 1999 at 08:57:05:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Harcels on March 06, 1999 at 04:06:29:
Dear Harcels,
Great thoughts. I know of at least one part of the country where this approach has already been taken and perhaps you might want to see how they are doing. It is frequently better not to have to reinvent the wheel.
Also, "Functional Medicine Update" and "The Townsend Letter for Doctors & Patients" regularly reports on such programs and you might want to see what they have reported over the past few years.
I am an expert on the clinical aspects of this stuff but have never had the energy to learn about the political/ social/economic aspects of this (Although I know that it is at least as important so far as actually getting it to the public where it can do some good.).
Let me know how I can help and I will do what I can.
Walt
Re: education and dysautonomia (lordy, lordy)
Posted by Walt Stoll on March 07, 1999 at 09:04:59:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Denise Wyrick on March 06, 1999 at 22:33:11:
Hi, Denise!
With your background and obvious maturity, you would be a perfect person to lend us your expertise.
Eventually, this (or something very like this) will be done in many parts of the country. Why not now and in the internet part of the country?
Namaste` Walt
Follow Ups:
Walt (professional issues)
Posted by Denise Wyrick on March 07, 1999 at 10:51:33:
In Reply to: Re: education and dysautonomia (lordy, lordy) posted by Walt Stoll on March 07, 1999 at 09:04:59:
Hi Walt, Thank you so much for the compliment. You know I think I am very similar to you in my professional life. I have gotten so discouraged with my practice that I decided to close up shop in July and devote myself to llamas and healing. I have had the good fortune to have a spouse that supports me in these endeavors. Anyway, it is good reminder that I need not throw the baby out with the bath water! Perhaps there is a place for me professionally one of these days.
I would guess that I have had more intuitive feelings about what one needs to be healthy... and trying to look at the whole picture in the work that I have done as a family therapist. However, I just didn't have the knowledge base to go with it. The kind of things I am learning here they didn't teach me in graduate school (and I know you know what I mean). I guess that it also speaks to the notion that if you are going to talk with folks about this sort of thing you also need to know how to "walk your talk"
Namaste,
Denise
Follow Ups:
Re: Walt (professional issues)
Posted by Walt Stoll on March 08, 1999 at 10:50:34:
In Reply to: Walt (professional issues) posted by Denise Wyrick on March 07, 1999 at 10:51:33:
Right on, Denise!
You got THAT right. Personal example is perhaps the most important single thing when it comes to influencing others AND knowing what you are talking about.
I look forward to your input. Remember what the wise man said: "Everyone is smarter than anyone."
Namaste` Walt