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Autonomic Research Doctors


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Hi everyone,

Thank you for all the welcomes. This stream of posts is so heart felt and interesting. I wish I could have been around in the golden days of medicine, but WITHOUT the sexism! I have been thinking all day about what else has caused medicine to change. In the olden days there were not as many tests/procedures. The family doctor relied more on the history and laying hands upon the patient. Now, in the ICU, why listen to the chest when you get a CXR everyday? I heard an intern ask that. Also, due to growing knowledge, we need specialists to keep up on everything. In the olden days, the family doctor did everything and so developed a stronger bond with the patient.

Biarrose:

PLEASE do not look for any "stupid" remarks about neurologists. HONESTLY, I was not and cannot be easily offended. There are bad apples in any bunch. Just treat me like one of the dysautonomia gang. Say what is on your mind. I would not want anyone to change what they say because of me being here.

If the pains are radiating from your spine down an arm or leg, please consider calling your PCP to check you for pinched nerves.

Sally:

Biarrose had some great observations about choice specialties. I think that the key is to try to avoid call. Call is devasting to the body, mine for sure. Sleep is golden and call destroys it. Your daughter might also want to check out nurse practitioners and physician assistants. They act like doctors but usually don't take call. The training is not as bad as medical school.

Morgan:

My theory is that some (I am being kind) of the psychiatrists have psychiatric illnesses themselves. That is what may attract them to the field. Hope there are not any psychiatrists here! Oops.

Miriam:

I have seen some patients for dizziness or passing out. The referring doctors wanted me to rule out seizures or TIAs. Instead, I recognize POTS or NCS. Sometimes, a patient tells me about their dizziness as an aside to the main reason they come to see me. They may have had the symptom for years and no-one paid attention to it or the patient never mentioned it before seeing me. I feel really, really wonderful when I can help them. I tell them I have the same thing, and they like that. Same thing with migraines and neuropathy. I share that I have these too. It creates a special bond.

However, for now I don't feel worthy enough to announce any specialty in autonomic disorders. I don't have the proper set up (no autonomic lab) to do it right. I only have tilt table testing through cardiology available to me. I also don't feel that I know enough yet. I tend to be a perfectionist. Going to the Academy meeting and attending the autonomic lectures will help. I am learning from you all too. I might change my mind. The other problem is that I have new patients waiting until August to see me. I badly need a partner, and recruitment is in progress. I love having the variety of general neurology too.

Look at that. I am long winded again. I would love one of those massages right about now. Speaking of massages, I discovered that messages really help my POTS symptoms. The massage therapist says that it increases circulation. My insurance poo pooed it even with letters from my PCP and Dr. Low though. However, my mom sends me gift certificates for massages for christmas and my birthday every year now. I told her that that is the best present she ever bought for me.

By the way, how do you put those cute, silly little faces in the notes? I am not computer gifted.

I'm off to my long overdue supine position. Sweet dreams.

Karyn

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Hey I am with you! Rant and rave we must. I guess for now my energy is not high so I cant do to much physically ranting, ha. i guess to better the research we all should try to some way or another get our illness out in the public, make people more aware of it. We could make business cards, title it dysnomina, or what ever and then have a web site to go to maybe a few symptoms listed, this could help. We could also have our local newspapers do a story on the awareness of unknown illnesses, such as ours. Some people want to stay private about what they have and that is fine, we could still do this with out exposing ourselves. guess i am not to private and have a special page on my web site for this. You can see it at richlandacres.com I think getting the awareness out will help. You mentioned fibromyalgia which i also have. this is now finally making public news, I have even heard it mentioned on t.v. It was never spoken of for so long...the awareness blossomed.

good ranting! You got us all thinking!

Bless you!

Brenda

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:) HI

I strongly agree with you on all points.

I have had IV infusions a few times and I dont know what I would have done without them! Drinking water just does not always help, you need some help sometimes, and I'd like to kick this Mr so in so in the rear for even suggesting "just drink water" :angry:

I agree that we need some strond advocacy in dysautonomia's treatment research you name it, whatever I can do to help just name it!

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Guest Julia59

Hey folks,

I was just reading some of these posts--------very good information!

I just wanted to tell you something FUNNY about a nurse.

On Dec. 5th 2000---a day i'll never forget, I went to the ER with tachycardia. I was scared to death because I knew nothing of POTS yet and I was on a beta-blocker. I said "how in the world could I get tachycardia on a beta-blocker"!

The nurse said it was the HOT FUDGE SUNDAY I ATE!

Talk about ignorance!

I could really go on and on---as you all know how I can get about this subject.

A very sore area for me...................

There are various forms of dysautonomia, and I have witnessed much heartache.

There is some very, very serious and sometimes life threatning situations that can arise. I am not saying this to scare anyone---it's just reality for some. I have seen many complications due to the malfunctioning ANS---and believe me some of it ain't pretty.

When one's digestive system shuts down----DUE TO FAILURE OF THE ANS, you would think the medical profession would take notice. Or when a person's heart almost stops due to a BP crash................

Yes, POTS in itself is not supposed to be life threatning, but it sure feels that way sometimes, especially when your heart is flopping around.

I imagine it took a long time for medical professionals to figure out all the co-morbidity issues with diabetes----and I imagine it will take even longer with all the various forms of dysautonomia.

And of course the big problem----Many Docs no longer go into medicine for the passion of helping patients get well again. They go into it for the $$$$$$$

And we all know there is no money in the ANS area of medicine.

Tragic....................

Julie :0)

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Karyn

There's instructions at the top of the page under my controls to create your own Avataar or Nina can help you.

I hope that you give being a POTS specialist a lot of thought, we could use one of our own here. Who better to believe us then someone that has it. I think you were a gift sent to us from Heaven :)

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I finally had the guts, and ability to get thru all of this thread.

I laughed, I cried, and I MISS MY CNA JOB!!!!!!!!!!!!!!!!! :lol::(:)

I have seen some awful docs and nurses, and some really good ones too.

The thing I miss the most about being a CNA/Med aid, is the patients and staff I worked with, I worked nites and we were just plain nuts. It was great. I am struggling with the state to get some classes payed for. I want desperately to stay in the medical field, but.... If I was in a wheelchair, it would be easy, but since I can walk and I might fall down and hurt myself, like that stops my from doing the things I can. :angry:

Ok all better.

Karyn, It is nice to have you here. Please ignot my typos-my brain is gone bye-bye.

black-still in the hole and to stubbron to just rest-wolf ;)

time for tea and mabey sleep.

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Karyn, when I respond, the icons for the faces are on the side and I just click on it. I've posted over 500 times now and just figured out how to get private messages!! Talk about a computer dork, and the thing is, hubby and son are the computer nerds of the universe. :angry: So I am constantly screaming, Dave come do this for me, and he always does. Theirs are downstairs, and mine is up on the main floor so I don't fall down the stairs and get a boo boo. :(

Dancing Light, my sweet Emily, you so touched my heart, you made me cry. Believe me, if I was your nurse, you'd never want for anything!!! :) Except for me to leave you alone. ;) I get pretty fanatical when it comes to being an advocate for people I care about.

Karyn, I think you are right. The days of bedside doctoring are coming to an end, because we now have machines for everything. They even have a robot in our largest hospital to deliver meds to the floors from pharmacies. They just program him and off he goes to various areas. How personal! Also, in offices, with all the computer installations (sp again) all the docs have to do is punch a button and the whole h and p comes up all pretty and exactly the same everytime. They don't have time to even look at you because they are typing away. It's pretty disheartening. At least my pcp will never get into that. He does dictate now as he got so fed up with no one being able to read his writing. But I believe that's a required class, huh karyn :lol: My penmanship is awful, it was bad before, now it's awful, so I just tell people I'm practicing to be a doctor. That always seems to get a chuckle. :) This is the longest thread I've ever seen on here, but it's so great. Thanks for starting it briar! morgan

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Guest tearose

All the, passion, thought, intelligence, experience, wisdom...that has been expressed here should be put to good use in creating solutions!!!

Please can we all consider working together to make a conference a success!

I think the "medical professionals" who attend a conference along with us will be forever changed for the positive!

...just thinking...tearose

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TeaRose

I really think that the NDRF is going to try to plan a conference, hopefully next year. It is a huge amount of money, I couldn't believe what it costs to put that on. I think what we should concentrate on is getting this out into the media. If we all wrote letters than maybe the squeky wheel would get the grease.

I will try to list a bunch of websites that you guys need to just feel in the blanks and cut/paste your story on.

I'm glad everyone is getting inspired, that's the way we need to be to accomplish this.

It's killing me knowing that there are so many people out there that are sick and go undiagnosed and give up on the medical community. Those are some of the people that I want to reach out to first. They need to know that they're not crazy and were here for them.

Things can't possibly move fast enough for me and I wish that I could quit my job and do this full time but I'm trying to raise my children by myself. I only have one away at college, 2 living at home in college, 2 in High school and 1 in middle school. So I'm stretched pretty thin and I would love to make a million commitments but I know my limitations.

Ok, lost track of what else I was thinking. I'm so exhausted and am having a horrible POTS symptom that I'm not sure how to fix at the moment. I started having severe muscle spasms and cramps yesterday. Everytime I stretched I would go into a spasm, my neck, my legs, my feet, hands. I couldn't even hold the blow dryer because my hand cramped so badly. I called my doctor and asked him if he would add on a potassium and sodium level to my weekly labs. I didn't think to ask about magnesium, oh well. Anyway my labs were normal but I don't have an explanation for the spasms and they haven't quit. I ate and drank a ton of potassium and sodium foods yesterday just to cover the POTS bases. I even drank tonic water for the quinine, YUCK :P

I'm thinking about calling Dr. Grubbs office and beg one of the nurses for advice this morning. I spent the evening last night checking the PDR on all of my current drugs and possible side effects. I tried running the combination of my drugs to see if one is causing problems with the other. I talked to one of the nurses at work. Don't you love the hoops we jump trying to figure out our own problems when we have one :) Oh well you guys have a great day and I hope to come back brain storming some good ideas.

Hey btw, I bumped our short stories again and we should organize them and do something about them. Don't panic anyone, I would never use anyone's information without proper permission first.

Steph

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Hi everyone,

I bet we all want to do great things to help our cause. Everybody has such great ideas, but the low energy level makes it so hard to take big actions. I find myself riding the waves of dsyautonomia. I lay low on bad days and try not to overdo it on good days.

Biarrose:

You are too sweet to call me a gift from heaven! I feel like this place is a gift to ME. You all make me want to be the best doctor I can be, not just intellectually, but emotionally too. Before I had significant symptoms of POTS, I broke both my hips at age 18, and that taught me a lot. Having POTS is much harder than broken hips though, because POTS is a chronic illness.

I agree. I am positive that there are many with dysautonomia who go undiagnosed . The same is true of migraine patients, and migraine is a common, WELL known illness!

You should not bear the burden of your own diagnosis. As you probably know, benign cramps can be caused by electrolyte derangements, dehydration, and exercise. I hope you will call your doctor.

Morgan:

A handwriting class for doctors.....hum. Call it "chicken scratch anonymous". I have actually been complimented on several occasions regarding my handwriting! I am so proud, and so unharrassed by pages and phone calls asking me to decipher what I wrote!

My boss wants me to use a template (fill in the blanks!) to dictate. I am resisting. I told him that there is too much patient, individual specific information in my notes to fit into a template.

Karyn

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Good for you Karyn!!!! Every one give her a biiiig hug :P And trust me, you have no idea how much the nurses appreciate being able to read what doctors write. Although we have gotten a few good laughs over the years of different people's interpretations of things written, or as you say, chicken scratch. morgan

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Oh you guys! Funny that we're having this topic tonight. One of our worst handwriting docs was on today so of course we're going to have a million pharmacy calls tonight. :lol:

I've been begging my dept to buy one of those fancy script writing machines, they're awesome :) Low chance for error too.

Karyn

Thx, have called my doctor about 4x's since this past weekend with no success. I even called Dr. Grubb's office this morning begging for help. I have an appt for tomorrow to see one of the on call docs.

Steph

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Karyn, stick to your guns about the dictation template - as a former clinic nurse I was once getting ready to send patient records to Mayo when I decided to take a look at what I was sending. Good thing I did since the man we were sending with prostate cancer had a "normal appearing vagina and cervix"! Yeah, we got it corrected but how embarrasing would that have been to my doc to get a call about it? :lol:

Thanks for being here - the input from a neurologist is something we can all find value in.

As for myself, after spending a couple years and lots of money I am content with my current PCP who understands how medically exhausted I am from all of it. I have reached the point where I can sit up for a few hours a day to get on the internet; I can attend church most Sundays even if I have to lay down in the pew; and most days I have enough vision to read. On "good days" I can walk to the chicken pen and watch them scratch around - my son put me a chair down there so I can sit and put my feet up.

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Guest Julia59

Gena's post........

"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?"

Gena, I second that. I would love to see Dr. Grubb mentor someone who has a PASSION TO HELP PATIENTS. Not a passion for $$$$$$$$$$$. Let's face facts, everyone needs to earn a decent living, and i'm sure an ANS Doc would survive on a decent salary.

Simply put, we need more Doctors to take interest in one of the most important functions of the human body---THE ANS. WE all know it controls all the involuntary body functions, so how could it not be important?

Maybe NDRF should hold the next Conference in Dr. Grubb's area of the US---Toledo, Ohio. There is a conference building and hotel right on the MCO Campus.

After all, so many patients sure know how to get here-(Toledo). I am one of the fortunate who lives only a few blocks from Dr. Grubb's office. However, I do know what it is like to travel to see a Doctor, as I have traveled to both Chicago and NY to see neurosurgeons for my on going cranial/cervical spine instability issues---and chiari, cervical spine stenosis.

Being a POTS patient myself has given me the passion to learn endlessly about the human body. All kinds of things were happening to me when my POTS hit, and the more that happened, the more I learned. So it's not all bad as I have educated myself continuously, and have been able to help others. I'm not nearly as knowledgable as many on this web site, and the many medical professionals who DO have a passion to help those with ANS dysfunction, but I suppose it's better then nothing.

I'm still reading bits and pieces of this thread---so forgive any ignorance I may show. Wishing you all the very best.

Julie :0)

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Dear Karyn & Steph

Thank you both for your thoughtful and informative replies....sorry, it took me so long to respond, I was feeling badly for a few days so didn't get around too much.

We will take into consideration what you suggested and check out various specialities that might have better allowances for health issues. This next year will pretty much be the test year for her because of the work load of studies....Karyn, I'm sure you remember that lovely Organic Chem class & Physics? So, we'll just keep showing support and hope for the best.

I've got a question for anyone out there that might have experienced this one.....

have you ever had your heart rate drop down in rate all of a sudden? My heart rate ususally runs 100-130s depending on the day, resting is about 80s. I've had a few times lately that the heartrate has dropped to 60 while standing and doing something, noticed after I felt weird in the chest and alittle lightheaded. I have never had my heartrate at 60 that I know of...usually it is beating like crazy most of the time like a jack rabbit! Weird stuff!

Well, hope you all are having a feel good day out there.

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Sally

Not sure how to answer your question. I can tell you that a normal heart rate is 60-100 bpm for an adult and can even be as low as 40-60 if you're a well trained athlete. So for you to experience a heart rate of 60 would be considered normal.

Have you talked to your doctor about your symptoms?

Julie

The MCO is a nice, convient place to hold a conference. I wonder if they've ever discussed it before?

Side note about the horrible muscle spasms and cramping I've been having this week. I saw one of my doctor's partners today and he didn't have anything to offer me. He said that I had already thought of all the things that he would've and I did all the right things by adding fluid, K+, Na, Ca, etc. He suggested that I get on the internet and see if I might be able to find out any information. :) I almost always do that before I see my doctor because if I can solve and fix it myself I'm much more comfortable than taking the chance of a crapshoot doctor's appt (life is like a box of chocolates, you never know what you're going to get.)

He told me that he could give me valium if it continued.

Oh well at least I got my epogen injection while I was there :)

Steph

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