Lets Share Our Good Doctor Stories!

[arizona girl]

I know most of us have stories about bad experiences we've had getting medical care. Those experience often get more of our attention than our good experiences.

So, I think it's time to share a positive experience we had when seeking medical care. A recent positive post gave me the idea. So let's share our happy stories.

I have three. The first time I saw my neuro and started doing my dog and pony show and explaining what pots was and how I'd failed my TTT and how it could have another cause. It became clear to me as he nodded that he not only knew what it was, allowing me to stop having to endlessly explain and convince, but then said to me "Yes, the causes of POTS can be endless. Let's test you for the most concerning and common and we will go from there." He then ordered labs for many of the scarier tests to rule them out and ordered my skin biopsy that came back positive. He is the one that also uncovered my CVID. If it hadn't been for him I'd still be fighting to get the care I need. Before, I left my appointment which was sort of short, but adequate. I said to the doctor, "Well that was refreshing." It is amazing what you don't have to feel, when someone actually gets it.

This week I had a new doctor appointment with a female Internal medicine doctor. One of my other doctors (which was also positive) said "You might want to find an internal medicine doctor, I think you are too complex for a family practice doctor and you probably know more about your condition then most doctors."

Back to the new internal medicine doc. The first thing she said to me was I'm here to help you and I can't do that if I don't hear you." "I'm just meeting you and you know much more about yourself and medical situation then I do." I will understand more and more about you as work together on your care."

While we still have to see how it goes with her, it took so much of the anxiety out and made me feel hopeful that finally I won't be having to manage all my specialist by myself anymore. Which is HUGE to me!

Happy posting!

[Christy_D]

^{In 2009, after several doctors telling me they couldn't find anything wrong with my son and telling me it was anxiety, school avoidance,etc, we took him to see Dr Gisela Chelimsky in Cleveland. The first words out of her mouth were, 'You've probably been told this is all in your head and there is nothing wrong with you. We are going to get this figured out.' She immediately gave me her game plan and told me what tests would be run and for what reasons. At the end of the appointment she gave me a big hug. She has been my favorite doctor through out this whole ordeal. While we no longer see her since we found a local doctor, she gave me back my faith in doctors.}

[SarahA33]

Arizona,

What an awesome topic idea! Kudos!

It's very easy to get caught up in referencing negative doctors appointments (mainly because for most of us the bad outweighs the good). But, There is always a silver lining (even if you cant see it at the time) and I've mentioned previously that POTS has taught me incredible lessons of being humble, patient and empathetic. Also, what an awesome new internist you've linked up with. She seems willing to not only learn from you, but to research and help others because of you.

[SarahA33]

^{In 2009, after several doctors telling me they couldn't find anything wrong with my son and telling me it was anxiety, school avoidance,etc, we took him to see Dr Gisela Chelimsky in Cleveland. The first words out of her mouth were, 'You've probably been told this is all in your head and there is nothing wrong with you. We are going to get this figured out.' She immediately gave me her game plan and told me what tests would be run and for what reasons. At the end of the appointment she gave me a big hug. She has been my favorite doctor through out this whole ordeal. While we no longer see her since we found a local doctor, she gave me back my faith in doctors.}

Christy,

Is Chlemsky at the Cleveland Clinic? I'm just wondering what specialty she is. You probably felt the weight of the world just drop off your shoulders when she hugged you and assured you that this would get figured out. It's doctor's like that, that we need in the medical community. She sounds like she really cared about your son and his health. (and cared about you, too!)

[Christy_D]

She was at Case Western University Hospital in Cleveland but has since moved to Milwaukee, Medical College(something like that). She is a pediatric gastroenterologist who has written papers and done studies of POTS and the GI system. Her husband is Dr Thomas Chelimsky who is a neurologist who has done studies with the autonomic nervous system/POTS. They were both great.

[Racer]

When I started experiencing my first ever faints, not having any health insurance, I didn't have any choice but to go to the local ER for help. Looking back on this with what I know now, it was a pure miracle that I happened to get the greatest ER doctor ever. At the time I didn't have a clue what dysautonomia was, or why I was fainting, and was in the ER scared out of my mind. This doctor was constantly in the room, constantly talking to me, calming me... everything you would hope and expect a doctor to do. I didn't have insurance, so she could have just run a couple tests and sent me home, but instead she kept me there as long as she could, ran a full cardiac workup, and didn't charge me for her services. On top of that, she called around to find me a cardiologist and PCP who would see me free of charge, and she even set me up appointments with them. The cardiologist (EP) she sent me to is the dr who diagnosed me, and who I continue to see. He seen me and ran tests free of charge for a few visits until I got health insurance.

The many times I have been back to the ER, I have never seen that ER dr again (I look!), but I wonder how different things would be if I hadn't had that dr point me in the right direction.

[westernmass]

1. My primary care doctor! When I first went to him with my POTS symptoms (dizzyness, fainting, chest pain) I was saying things like "I'm sure it's just anxiety" and HE told me no way, this was not anxiety, it was something physiological, and sent me to the cardio who then diagnosed the POTS. He has been there every step of the way, and even though he doesn't have a lot of experience with POTS is always willing to run tests, refer to specialists, etc.

2. My neuro. She is really the first doctor who I feel knows more about POTS/Dys than I do, which is reassuring. She is also very kind, like my primary, and never makes me feel like it's in my head.

3. My acupuncturist! Has given me the most symptom relief and inspired me to start master's degree in acupuncture and TCM. I hope to be able to help people like us

[Suthrngal]

Arizona Girl, what is CVID? And what causes of POTS did he initially test for? And why did he do a lip biopsy and what was it positive for? I was told I have POTS but noone ever discussed why. I'd like to know because we're missing something. :-). No good doctor stories but soon I pray!

[arizona girl]

After being offline for a few days I thought that this deserved a bump. Of course one of my best medical stories was finding DINET, which helped me find the right doctors to diagnosis me. I can't say enough how important Dinet has been to me over the years.

SouthG, CVID stands for common variable immune deficiency and is one of several primary immune deficiencies. He tested me for small fiber neuropathy/skin biopsy and some rarer causes of autonomic dysfunction. If you search my posts I've listed that information. Dr. Levine is my doctor, if you want to narrow it down. My doc did a skin biopsy not a lip biopsy. It is done on the lower leg and upper thigh and looks for nerve damage. The small fiber nerves are the nerves that control your autonomic functions.

If you look thorough DINET's main website and you know what your set of symptoms are, the info there will help point you in the right direction. That was how I found that small fiber neuropathy most closely fit my set of symptoms.

We can't always find an underlying cause for dysautonomia, it is sometimes idiopathic. If that is the case then we have to rely on just treating symptoms to manage it.

A lip biopsy is for sjogrens syndrome. I also had that done by endocrinologist.

[AshleyPooh]

After years of medical problems that were brushed aside by my regular doctor, I switched clinics. The new doctor listened to me, and although she wondered if it was anxiety ( part of it was) she sent me to a cardiologist through a charity program to make sure it was nothing more serious ( my family has SERIOUS heart disease history). The Cardiologist, Dr. Cox, immediately spotted my symptoms for what they were, and told me so that very first appointment! She said she'd run appropriate heart tests to rule anything else out, but that she wanted a tilt table test to check for dysautonomia. So we did, and I'm ever so grateful she listened to me! I felt like I was going insane, especially after my old doctor refused to believe me about my problems, I was desperate and crying all the time when I got to her.

No insurance + vague strange symptoms = no diagnosis, for so many people, but luckily someone out there listened and knew a little something, and I got the diagnosis I needed.

[corina]

My family doctor is a real gem and so is everyone in his office! I feel so lucky to have them, they are always trying their very best to help me. My doc is always willing to listen to my ideas and has learned so much about dysautonomia, that he can think with me and help me find answers (if there ARE any). He even gave his cell phone number to my ANS specialist to just call him when necessary. I think I've found a really great team of doctors (together with my cardio) and feel really blessed and not alone in trying to find answers anymore!

[E Soskis]

I have a team of physicians that work very well together: internal medicine, neurology, vascular, infectious disease, pathology, as well as cardiology/electrophysiology. They are all willing to listen and not afraid to ask the right questions. Without their interdisciplinary cooperation, I don't think I'd be here today. I am richly blessed and very grateful for each and every one of them.