Autonomic Research Doctors

[briarrose]

I have recently read some posts here about reserach doctors and this got me very angry and disgusted.

I'm going out on a limb today in my disgust.

2 years ago I had an eye opener to one of the leading Dysautonomia researchers in our country. Although I really liked the man and he did have some good things to say, HE DIDN'T HAVE A CLUE! A man that should be our future help training and educating medical students and other doctors.

The doctor was flown here from the MidWest to do Grand Rounds at a couple of the local hospitals, including the University hospital where they train medical students.

In his lecture he only talked about roughly 3-4 symptoms that we experience and when some of the doctors asked him questions about whether or not IV hydration would be helpful, he said NO just give them a glass of water. Now Personally I've had that glass of water or many glasses of water and I've had IV fluids. Let me tell you that for me, hands down the IV fluids saves me days and weeks of suffering.

My point in all of this; researchers see you for a specific project they are working on. They get a glimpse of you at one moment during your POTS/Dysautonomia life and then they usually don't see you again. They don't have a clue and I think that most of them are NOT interested on how Dysautonomia continues to evolve in you. How you experience an exacerbation in current symptoms or develop new symptoms all together.

It's my opinion that they really aren't interested in the WHOLE illness. They don't listen to all of the symptoms that we experience leaving us hanging out on a limb because our symptoms need to be documented in a medical text book to get acceptance by our own doctors. The 60 or so accepted symptoms that have been documented by multiple doctors over several years are by doctors that see the patients on a more regular schedule and LISTEN to what they are saying.

When I first started presenting with strange symptoms to my doctor (many of those I've seen posted here by you guys) I just got a shake of the head and I was told "I've never heard of such a thing." Sometimes my doctor would believe me and other times it was a disgusted tongue lashing about stress in my life (you know the cop out used by doctor's instead of them just saying I don't know but lets figure this out together.) Yeah, how would they know since the researchers won't listen to us either and they certainly don't do any advocacy.

Anyway, I'm not too impressed with them.

Not related to medical researchers but an applause and warm thoughts to a great Dysautonomia doctor. Dr. Grubb was the first compassionate, understanding and KNOWLEDGABLE doctor that I met in this whole ordeal. That man deserves a medal because of his acceptance and confiramtion of the weird things this illness does is huge to a patient and there healthy mental well being!

You see many (Doctors, Politicians, general public) turn their backs on illnesses like Chronic Fatigue Syndrome, Fibromyalgia, etc. Their ignorance and closed minds is what sets us so far back into medical history. We need to brainstorm a way to Advocate for Ourselves! This needs to be brought out to the public's eye. This needs to be brought to the attention of our Government. How will we ever be accepted and given the same respect that people with Heart Disease or Cancer get. How will we ever win a disability case the first time without killing ourselves, our bodies and our minds in the paperwork, diplomatic process. How will we ever get government funding for more research into Dysautonomia.

I think this rant about reserachers has me scratching my head and going to the extreme to say that we need a voice at the White House to be heard!

[blackwolf]

You rock girl!!!!

I would love to help, mabey I'll talk to our old senator that just reetired, he loves those kind of projects.

blackwolf

[Ernie]

Hi Briarose

I had the IV problem last week. I was getting some blood work done and had to be fasting. Whenever I fast it triggers the adrenaline rush and the only way to stop it is to get an IV. My specialist here said that I just needed to drink. So I did and every time I stood up I was fainting. After fainting 4 times in the room (during the 4 hours they made me drink and eat) and showing my permanent prescription for an IV he decided to send me to the ER because he did not want to take the responsability of ordering the IV. They have my American medical file while all the autonomic testing was done which proves I have 750 ml of blood missing all the time.

I was lucky enough that the ER doctor agreed that I needed an IV.

I had a letter from Dr Grubb saying that I need IVs but the doctors here don't accept it because Dr Grubb is American. So my PCP wrote one and the specialist here don't accept it because it is written by a generalist.

I don't know why a glass of water does not work for me but I surely know the difference in orthostatic tolerance when I get an IV.

Before I thought that if I died I could help my peers better because I would give me body to science. Little did I know. When my brother died last year, nobody in Canada wanted to do the autopsy because of POTS. So we gave his body to NIH for research on POTS.

I think there is a conflict on interest when a researcher gets a grants for astraunauts (deconditioning after coming back to earth) and we are their guinea pigs. We are not temporarily deconditioned because we went in space! There should be funding especially for us. Then, when they understand the problem for the astraunauts we are left behind with no treatment.

Ernie

[briarrose]

Ernie

Thank you, that is correct.

Part of me is glad that NASA funds some of our research, otherwise we might have none. But the other part of me is disgusted to be a constant guinea pig.

IV fluids should be prescribed as needed just as other medications are.

I remember when you donated your brother's body. That was a huge thing to do. I had a friend that donated his body too for heart patients as he was born with a congenitial illness.

Blackwolf, every step helps. A Senator is definitely a plus and it would be nice for us to get all of our State Senators on the same page.

[Guest tearose]

I wish more research would be done...the reality is that no one seems to die of POTS so we face a long line of rare disorders that will be researched before dysautonomia.

I think when POTS/dysautonomia is part of another disease process, it gets some mention but not real treatment in and of itself. It will be a long time before it is recognized and treated as we need!

That being said, I will do what I can to help finding answers for us and others.

tearose

[Jenn202]

This is a great post.... It at least gives me confirmation that I am not crazy and the only one that has experienced such craziness by Dr's....

I have so many issues with my Dysautonomia...I cannot regulate sodium, potassium, and fluids correctly... I go into a horrific state without IV fluids if it gets bad enough and believe me it has gotten VERY bad at times throughout this ordeal...

I have been told the same: drink water with a big salt tab....well if that worked I WOULDNT BE SITTING HERE IN THE HOSPITAL HALF BREATHING NOW WOULD I!

I wonder if we will ever see the help we need in our lifetime.

I actually have 2 diseases with the same stigma...along with POTS I have Lyme Disease...the Dr's love to see me comming!! LOL

Anyway... sorry if I vented too much... But this really hit home tonight.

[DancingLight]

i fear this post may get shut down...it is getting a bit hostile? i'm going out on a limb here...

i see one of the top researchers in the country, and he has been a godsend to me, and i have not experienced what you speak of with him. i email with him weekly, can page him anytime, and he is very affirming and willing to try different things. he seems to really 'get' how hard this illness is, has a wonderful sense of humor, and takes me very seriously.

i have had my share of AWFUL drs. appts., but i just don't think it's fair to say that all the researchers out there don't care about their patients.

okay, that's my post for the day.

emily

[morgan617]

I haven't had any luck with the specialists, but I have a great open minded and very caring pcp. He just doesn't know what's causing my problems, but reads everything I bring him and is open to anything I ask for. If I told him I wanted an order for a weekly I.V. I would have it in my hands in 5 seconds. I can't say much for my limited experiences with the specialists, but at this point don't really care about the specifics. I just want to feel better, and I am fortunate enough to have a primary that feels the same way. I got very frustrated like every one that posted here, but then realized how much effort it took to be angry and have it not make any difference. I no longer have any desire to see a "top notch doctor" I think I have one right here in spud ville USA.... morgan

[Guest tearose]

wow, am I still sedated? really, I am not offended at all... I thought briar was letting off steam and I didn't get the feeling of across the board negativity towards all research doctors...just her frustration with those researchers who are looking at us for their "self gain" and not really having our "interest and well being" as their main goal.

Let's face it, we have about 450 members who are here and jointly we speak of/ know of only a handful of doctors who are literate in dysautonomia. What complicates life for us it that in reality we wind up going one place for diagnosis and then to someone else for maintenance. And that may not even be a local person who is doing the maintenance!

(I wish we could clone the "top notch docs"!)

I think it is important to share the fact that when we do go to the major centers for our diagnosis, we may never benefit from the research trials they offer us at that time. We must take time to carefully consider the pros and cons of participating in any research studies since we may wind up with triggering symptoms and not receiving any cure in the long run.

We must accept the system the way it is now to at least get the information and diagnosis we need. We do have the ability to make better changes in the system by organizing ourselves and going ahead in a diplomatic, intelligent and professional way.

I think this is the perfect reason to sponsor a conference.

Let's voice our problems and then help ourselves find good solutions so we can all make our many, many, remaining days the best quality possible!

tearose

[briarrose]

Morgan

It sounds like you have a great doctor, that in itself is peace of mind

I wish they could all be like that.

TeaRose

I agree with you 100 percent. It's disheartening to know that we get put on the back burner or little attention for such a multi system problem because it isn't going to kill us. It would be helpful if we all took a few minutes and wrote our senators and congressman. Every little thing that we can do for ourselves!

Jenn

Never think that your crazy! Always trust in yourself! It use to make me angry the way the docs treat us at times but thanks to the help from many good people here on this forum, I can just laugh and know that it's the doctors that need to see a psychiatrist not us

Emily

I didn't mean this thread as a threat or an attack to anyway. I apologize if you felt a personal attack.

Ialso didn't name names for a reason so being that there are at least 2 research facilities in the MidWest, it would be very hard for you to know whom I was talking about.

I try to stay within the guidelines and rules of this website. With that being said I'm not criticizing you for feeling like I was personally threatened by you telling me that this post is going to get shut down.

Furthermore let me just say that I'm an American and have a right to my opinion and voice just as much as you do.

I also didn't state any fallacies, but rather facts based on First Hand Experience of a educational meeting that I attended.

When I said I was going out on a limb, I meant stretching my broad thoughts not that I was flirting with disaster.

If you noticed I went on to commend Dr. Grubb for his work with POTS patients. But I was saying that if our hopes lay in the hands of research facilities, we're going to be muddeling through for years to come. A huge study that was suppose to take place over a year ago, was put on hold do to lack of funding. Many doctors that I have spoken to do not want to study Dysautonomia because there isn't any money in it and others say the Autonomic System, Hypothalimus, thalimus, ect. is so unknown.

Furthermore, the research doctor's don't bring you back for follow up in research so how can they really know all the ins and outs of POTS. How can you look at a baby at the age of 1 years old and tell what they will be capable of at the age of 5? Not the best analogy but I hope you get my point. In a 4 year period of having the illness of Dysautonomia many things change for a large majority of us. If a doctor can't look at the whole picture then how can he make educated analysisis?

We need motivation here to ban together and do something about our situation. Some consistency in treatment would also be helpful. Many of our pebbles are dropped down to us from researchers. We are giving them our bodies to study the least we can ask for is some output and assistance, information going to the doctors and public, not just how we can send an astraunaut to space without the side effects.

The right to disability for those who needed it without going through 2 years of nightmerish experiences and 3 or 4 rejections before they give up.

[LindaJoy]

Hey, Briarrose, You said in your entry that there are 60 accepted symptoms of dysautonomia. I've only been here for a few weeks, and I've seen many symptoms mentioned (I've yet to be diagnosed--go to Cleveland Clinic this Wednesday for a tilt table test), but could you direct me to a Website that lists all 60 symptoms so I can compare mine to the accepted list?

Thanks.

LindaJoy

[Ernie]

I know researchers have discovered 2 forms of genetic dysautonomia so far so I wonder why we still don't have much credibility. Usually doctors believe in numbers and genetics.

My opinion with IV fluids is that since our body cannot adjust liquids and other chemicals properly even if we drink water it is eliminated immediately. When we get the IV it stays in our system for a few hours or days. At least, that's my case.

I agree that we should be free to share our experience with whichever doctor we see. This way the next patient will know what to expect. If I would have known what to expect from V I would have turned my back on them. I only found out the first day I got there. Since those big hospitals carry "big names" we expect to be treated decently but this is not always the case. Knowing what lays ahead we could bring our caregiver to protect us from medical abuse.

Ernie

[briarrose]

I started this topic after reading about Dawn's experience with a research facility. But her experience is like many others. I also know after hearing one of those research doctor's talk to a different kind of audience (Professionally), I have a pretty clear idea on why we get treated the way we do.

LindaJoy

Here is a great start for you on a symptoms list.

http://potsplace.com/symptoms.htm

http://home.att.net/~potsweb/POTS.html

Also please check out the top of this main forum page as Nina has posted a whole page of references.

Ernie

I often wonder the same thing. The next question that comes to my mind is why when you go talk to a new doctor, often they haven't heard of POTS and still don't know about Dysautonomia and it's effects.

IV fluids are a huge relief to my body and symptoms during a flare up usually. My menstrual cycles are so bad that I can't drink fast enough to keep up with the loss.

Drinking water has the potential to also wash out or decrease your electolytes that's why athletes drink sports drinks. It is well known that you can actually drink enough water to dilute out your fluids to an imbalance. IV fluid goes drinkly into your blood stream and helps increase your volume.

It helps to know about experiences others have had with treatment and doctor's, it can save the next person a lot of time, frustration and money. You can still choose to see that individual but at least your forewarned what to watch for.

[sally]

Hi, I'm sorry you had a negative experience. I think it?s a shame you had such a bad response with that particular researcher in the understanding dept. Hopefully you'll get another opportunity with a different researcher in the future that will be more understanding.

I think researchers as a whole are genuinely interested and honestly want to help a great deal towards solving the suffering of humanity otherwise they wouldn't be in the field of career they have chosen for themselves, long hours and considering that alot of the funding is based on grants probably too little pay. But, I also think that not just one individual is going to hold all the answers, no matter how much the expert the physician thinks he/she is (my own opinion).

From my personal experience, although from a different genetic problem (ehlers danlos) the genetics researcher was very informative and very helpful and inviting for any future reference as well. This particular person was from the NIH, maybe you might have success there for better answers. I also wish more consistency could be obtain in treatment but it seems as we are all so very different with various degrees in severity and symptoms, that idea seems like it might not be possible. As with EDS, the amount of information I have obtained has come from a various multitude of Physicians, researchers, genetics personnel, physical therapist as well as from the people themselves who have this problem.

good luck to you and have a feel good day..

[KathyP]

Hi Briarrose;

I share your frustration about doctors who don't understand!! I have been to quite a few of those myself. I'm glad you shared it here. That's what I log on here for, to get ideas and share my frustrations about this syndrome.

I appreciate the great idea of contacting senators and congressman, BUT, since this is a condition that is not life threatening I am willing to bet it would fall on deaf ears.

I think the only way POTS/Dysautonomia will get the attention it deserves is if a celebrity or famous person was afflicted with it. What needs to be done is to throw POTS/Dysautonomia into the media. Have it as a medical condition on a TV series, then people would want to know what it is, even doctors.

I know alot of people that refuse to watch TV. But there are alot more out there that have it on continuously. The media has a way of forcing everyone to feel the pain and suffering that others go through whether they want to or not. Why not use it for the greater good?!?!?

I haven't used IVs for fluid loading (I've never heard of it either). I don't use sport drinks either because of the high sugar and/or caffeine content. I drink lots and lots of water, and also take multi-vitamins so I don't wash away all the good stuff in my system. Oh, and I increased my salt.

I pray for all of you here at this site. It's a very long road but it's easier to walk down when you are not alone.

KathyP

[morgan617]

Having been a nurse for about a million years, I can still remember when MS was the hysterical woman's disease of the month. When women didn't and couldn't possibly have heart disease. that mentality killed my mom. Then along comes Cfids, and fibro, which are also complex. It's been around for a very long time and the majority (Not All) of doctors still don't believe in them. I worked in an office that actually refused to see new patients if they had fibro or cfids! I was livid listening to the doctors discuss what horrible and psychotic people they were. I informed them that I had fibro, and asked if they thought I was psychotic. I worked my butt off there, and they knew it. They were all embarrassed as I asked them how they could define themselves as good doctors if they were only willing to take treat em and street em patients. Needless to say, I did not stay at that clinic. What I am saying I guess, is there is new and fool proof information coming out that proves that fibro is a very real condition and these types of doctors will hopefully feel like the fools they are. It will be like that with pots. It is predominently a female disease and there fore will automatically be in question until more men start opening up about their problems. Or Jennifer Anniston or Brad Pitt gets it. That's just the way it is. Historically women are not treated like men even tho more women die of heart disease than men and have a higher mortality rate. Research comes before anything else and only statistics count. Then they will begin trying to figure out how to find a cure. They spend more on research for parkinson's than actually trying to find something that helps in the meantime. This is a world more concerned with cloning the perfect people than helping the less fortunate. In time, a long time I fear, there will be answers and it will be seen for what is. A devastating, life altering problem, and disease. Until then, I believe the best we can do is support each other, and for those able, be guinea pigs as that is the first step and without that, there will be no second one. Maybe most of us won't see any results, but will have to content ourselves with the knoweledge that we may help future generations. Going back to the beginning, there are now many drugs and a lot more help available to MS patients, which HAS happened in my lifetime. So as frustrating and annoying as this is, we have to stay united and squeaky wheels. morgan

[briarrose]

TeaRose

I think I completely missed your post yesterday, I'm sorry. Thank you for understanding what I was trying to say. I wasn't picking on one in particular but more of a frustration as a whole.

You have a great idea that has eluded me for sometime and that is a need for another conference. That would definitely put things out on the table and bring education and consistency. When I say consistency I mean that certain things do work for most and should be a standard of trial.

Kathy

I think your right about a celebrity being a poster child for us. Chronic fatigue Syndrome has gone a long ways with Hillenbrand behind them. They once thought Johnny Cash had something like Shy Drager but was misdiagnosed. I wouldn't be suprised if someone famous has this illnesss they probably just haven't been diagnosed yet, LOL.

Morgan

YES! I know exactly what you mean. I work in a hospital and have to listen to the doctor's talk down about CFID's and Fibromyalgia all the time. One doctor in particular wants me to prove that they really exist. He says there isn't any proof and that they are just B.S. diagnosis. I watch them come out of patient rooms just rolling their eyes and shaking their heads and it makes me mad.

I'm so glad that you had the courage to speak your mind to those doctor's. So many people don't. So many people come into my hospital and I'm behind the scenes advocating for them and they don't even know it. I'm putting my butt out on the line constantly for them to be heard.

I think we should participate in research as it is necessary. But I also think that the doctor's can treat us a little better, with respect. That they should take a little more time to learn about all the ins and outs of POTS because right now their just getting tidbits here and there.

I think the squeky wheel does get the grease and we aren't being squeky enough

My intentions were decent with this rant and I was trying to inform others of what is really going on.

I know of at least one decent researcher

I would recommend people buying the last NDRF conference tapes and watching them. It had some eye opening information too. Plainly, many doctor's couldn't, didn't know how to answer questions presented by patients.

[LindaJoy]

Thank you, Briarrose, for the sites to access. I had seen the second one, but the first, mostly written by Dr. Grubb, I hadn't seen. Thank you.

Linda

[DancingLight]

briarrose,

(and anyone else who i may have upset...)

it was not my intention to be threatening you or saying that you didn't have a right to an opinion.

i am sorry that my post came off that way...

i hear what you are saying, and i share many of your frustrations about the lack of drs. available, research, trouble getting ssi/ssdi, etc...i would not be on this site if i wasn't soooo passionate about helping people with this illness.

i just feel like the whole medical profession is in a bind too, not just the patients. i feel similarly to what sally posted, i guess...

i am going to use my energy today to write my fundraising ideas to michelle...

again, i am sorry to have offended anyone here...i hope you all know how much i support you, this illness and the struggles we face...

emily

[Gena]

Okay, I think we can all agree that there are good research doctors and then there are others that, well, just don't cut the mustard!

My question is this....Dr. Grubb (whom I've never met) seems to be one of the most compassionate and knowledgable POTs/dysautonomia doctors in the country, according to everything I've read here....so does anyone know if he's training/mentoring another doctor to follow in his footsteps?

[morgan617]

You all do understand why DR. Grubb is so wonderful? Because he's been very ill and knows what it feels like. I have found that the best doctors and nurses are the ones who have had a personal health struggle, especially if it's chronic or baffling. I think there are many different personalities in the medical field and they seem to find these niches. I haven't met a neuro guy who wasn't very cerebral and somewhat odd. Not neccessarily in a bad way, but they all seem to have the same type personalities. Most surgeons I've met are somewhat arrogant and have no interest in you outside that particular problem. and it goes on. I find that there are a fair amount of internists that are not great, but for the most part that is where you find the people that really care. The real hands on doctors that have to deal with you day in and day out. Unfortunately, there are a share of them that are just insecure enough to want to label you crazy if it baffles them. We've all met a least one of those I'm sure. But until anyone has walked in your shoes, they just don't get it. Maybe if they had a machine that when you described how you felt, the doctor could feel it too... then they'd pay a lot more attention. And remember, most doctors are not used to their patients knowing more than they do. Talk about putting a crimp in the old ego.... I don't think anyone should be offended by what anyone has has to say here. We have all run into creep doctors in this journey, for some of us, that's all we've had, and for the more fortunate , we've managed to find a pip. And we need to remember, we are dealing with humans, fallible, cranky, tired, indifferent, compassionate, cold, you name it. Just like us. My cardiologist, who asked me to discharge myself from his practice, said the autonomic system isn't even taught in med school. This is the basis of all human fuctions and it's not taught. How scary is that????? We have to be more proactive, but the problem is that for many of us, proactive is getting to bathroom, or taking a shower. Or making it through the grocery store. This is a real problem, with difficult solutions, but we must remain a cohesive and united group working towards one goal, cure. Off the soapbox as am really tired now, morgan

[Guest tearose]

I looove it when we all get passionate and we learn so much from each other!!!

morgan, yes, such a good point! we tend to think about how to reach for mars, which has it's value, but what about improving the quality of life for those who are here and struggling today?

which leads to an excellent point by emily:

Many doctors are stuck between a rock and a hard place. They must deal with our insurance companies, pharmaceutical companies, malpractice insurance, being ethical, being good at what they do, treating patients, keeping up with their field and also have a life and family of their own!

I think most doctors do enter the profession to help "heal the sick" and "comfort the dying"...it is not an easy profession at all!

Lots to think about with everyone's input here...thank you for giving me the opportunity to think outside my brain today!

tearose

[yogini]

I think the problem is that we've all had the misfortune of getting a serious, debilitating illness that is pretty rare and somewhat invisible in the sense that it doesn't really show up on medical tests (other than the TTT, of course). So our lives are severly impacted, but it is hard for the establishment (doctors, social security, employers, etc.) to see it because many of us "look normal" and our tests come back normal. The rareness, "invisibility" and the fact that it isn't generally life-threatening also makes it harder to get funding for research, etc. It is very, very frustrating for us patients. I hope (and think) that Morgan is right that over time POTS will become more recognized and better treatments will be available. Hopefully this will be in our lifetimes.

I haven't had the greatest experience with doctors myself, and I agree (and most of us probably agree) that doctors need to become more educated and a lot more sensitive to POTS patients. I can't make any generalized statements about POTS doctors, because I have personally seen only a couple of these doctors. What worries me is that lately a few people have posted that they don't want to see a particular doctor because of some of the posts, and I don't think this is a good result. Although there are clearly areas of improvement for many of these doctors, their testing and advice is probably worthwhile for most of us nonetheless. Anyway, just my two cents.

-Rita

[dawn]

I'm going to try not to be negative. Morgan your post basically said it all. I do have to say that my classmates and close friends who are physicans with the exception of one went into medicine for the money and the idea of an early retirement. They're not bad people but they are focused on themselves. I have worked with some very kind and compassionate doctors, they usually don't take new patients and they burn out at an early age. They are only human. POTS is often unrecognized because it's so easy to call it an anxiety disorder. We have so many symptoms that they tend to think we have somatization disorder. I recently saw a neurologist who said he didn't know anything about the autonomic nervous system-A well respected neurologist!!!!!! I don't get it.

As far as someone famous having this, I think Johnny Cash had dysautonomia, I remember reading it somewhere.

We're lucky we have this forum to support each other. Most of us are not going to get it from the medical society. Physicians like to deal with conditions that they can fix.

Dawn

[briarrose]

Emily

It's ok, we're on the same page. I know that sometimes I come across as gruff but it's just a matter of being fed up and having your hands tied. I so desperately what to do something to make a difference. I have written so many letters to people about POTS. Everyone from my local government to The Oprah Show, 20/20, Primetime, Newsweek, my local news stations, the local broadcasting company, Jane Pauley, etc. Again I just really want to help more than anything. I feel like I'm sitting here with my hands tied when what we need is a huge push and recognition. And we all need each other here, Family

Morgan

It's so funny that you brought up the comment about the fact the doctor's don't learn much about the autonomic system in med school, I was told the exact same thing. In fact, when I was telling one of my doctor friends that I had POTS he said isn't that the fatal one; he was talking about Shy Drager.

Hey it would be nice if they could experience what they treat I've seen some doctors when they keep a simple injury or illness, WOW, watch out because they are demanding and don't like to be kept down I hate listening to normal people whine about having a cold and a runny nose, that's when I usually hand them stuff from the Invisible Chronic illness awareness website. I also hand out Chris Caulders Mind Experiment for a Doctor

http://home.att.net/~potsweb/mindexperiment.html

Morgan, TeaRose and everyone else

It is important to take baby steps. Did you guys see where the Chronic Fatigue Syndrome foundation wrote a genetic letter and then happy people log into sign it and it was already set up with forwarding addresses to the Sentate I believe. We should think about something like that. I nominate someone that doesn't step on toes like I do. TeaRose your a good writer

Rita

Unfortunately we do need all the doctors that we can get that have experienced Dysautonomia. But we also need doctor's that believe in us. I wouldn't want a Lawyer defending me that thinks I'm guilty of murdering someone Sometimes, doctor's have an off day too and I think everyone deserves probably at least 2 chances.

Dawn

I have met all kinds of doctors too. I love working with the ones that sincerely care about the patient as a human being. But I too know doctors that are in it just for the money and it makes me sad because they are the ones that can be so callous.

I'm grateful everyday for everyone at this website. I often don't respond to all the posts that I would like to and sometimes even feel bad or guilty when people need support and I don't chime in; TeaRose and Earthmother 2 great people here had recent posts wishing them well and I'm still feeling guilty but I think their wondeful, just like everyone else here.

I feel horrible for people that are really sick with their symptoms like Ernie and I'm not completely sure what to say. I'm here if you ever need me to look up things or help find resources, I promise to do the best that I can for any of you guys.

I sometimes have to stop and go back to read about great people such as Joni Eareckson Tada, very Inspirational story. It kind of puts things into perspective for me. OK, I'm rambling now