I Got Fired As A Patient

[jangle]

Florinef discontinued due to side effects, doctor fired me as a patient. Go followup with someone else in the wasteland (Fallout 3 reference).

Don't know what to do. I just have this feeling like I just want to go into a lab. Go into a lab for three or so weeks and just have all the potions and literature and science and just experiment. Experiment on myself and figure something out. You know. Actually figure something out. Instead of just sitting in my cell here, suffering. Waiting.

[sue1234]

I wish you could, too! It would benefit all of us to have real research on our subjective symptoms.

[Lemons2lemonade]

doctor "fired you" as a patient? What type of dr. do you see, is it a regular general practice dr.? Don't know if your insurance has it but i see internal medicine, they are much better and used to dealing with weird diseases. Also, when you are inpatient in the hospital internal medicine usually is the doc that you see who sends in other specialists.

[cma]

I was "fired" by two doctors After taking florinef I discontinued it as well, because there was no difference in my heart rate and the doctor who is supposedly POTS specialist here in Ireland had no interest in seeing me after that. She told me I should start exercising and stop coming to the clinic. At the time I was seeing cardiologist as well for SVT's and she put it in nice words that basically I'm his problem now. On my last appoinment cardiologist told me I didn't have POTS, because I can get up from bed and be vertical without fainting. He checked my heart rate and to him 30*4 is 90, so his conclusion was I'm healthy and don't have POTS.

I'm tired at explaining them everything over and over again, and what's the point there is no cure anyway. So, I'm just dealing with this on my own, with no meds, just water, salt, compression socks and exercise.

[kayjay]

I was "fired" via letter about 12 years ago. I was angry at the time but it really was a situation where the doctor did not know what to do and may have been worried about legal issues. Best wishes on finding someone better! My doctor now is interested in me as a patient and a person.

[potsgirl]

I was told once by a doctor that there was nothing they could do for me if I couldn't take Florinef, and that I would probably be dead in the next couple of years!!

[RichGotsPots]

Don't sweat it. I suggest you look for a good specialist even it's a 90 minute drive (make sure they see a lot of Dysautonomia people).

[Lemons2lemonade]

I was told once by a doctor that there was nothing they could do for me if I couldn't take Florinef, and that I would probably be dead in the next couple of years!!

Oh my gosh! That is just so ridiculous.

[roxie]

That really stinks.

I was going to say what Rich said. Maybe you could even call the closest dr on the list & see if they know of a good dr closer to you?

[kmichaelson]

I'm sorry, jangle. That's so frustrating! I haven't had doctors put it quite so bluntly, but I've certainly had lots of doctors imply that they've run the tests and prescribed the standard meds, so if I'm not getting better, then they don't want to see me anymore. I worked in a field peripheral to technology and I compare this phenomenon to when someone calls in with a tech problem and the help desk can't troubleshoot the issue, then they often assume it's a user error since they don't have documentation of this particular problem! It's like if our disease isn't in a doctor's matrix, then they want to wash their hands of it. I hope you can find the right doctor, because certainly there are caring people out there who have the knowledge and dedication to help; it's just very difficult to find them and often a long discouraging journey on the way there.

[Clairefmartin]

Even of you have to travel, it is worth the trip to see an expert. There is a new site called www.giveforward.com, they help raise money for medical expenses if you need help with the funds getting there. I have been searching locally for help for almost a decade, and just am finding it. Going to a specialist compared to other docs is an amazing experience after all these years of blank stares. But I have a trip/apt at Vandi scheduled in late July just in case it doesn't work out, I am convinced that finding the CAUSE of POTS/Dysautonomia is the first step in successful treatment, and no one has bothered to do that with me here locally - and then I gave up, and ended up how I am now. They are finding more and more causes - even if you don't have an underlying disease causing it, a malfunction is happening somewhere! So don't give up people!!!! Fight for answers.

That was my pep talk for the evening

[jangle]

Lemons, I've never been inpatient before, but sometimes I wish I could just go away for a while and have someone figure this thing out. It always seems like a losing battle to try and combat a chronic illness in a 15 minute time window. I was seeing a neurologist, a fairly high up one at that - he was a professor at a prestigious medical college.

Thanks for the website CfMartin, but I don't know. Yes I would definitely have difficulty getting the funding to go to a specialist specific to POTS, but really I think there are only 2 or 3 such people in the country anyway. Raj at Vanderbilt, Stewart, and Grubbs. I'll look at what I can do, but I just don't know how feasible it would be for me to travel very far from where I live.

[Clairefmartin]

Lemons, I've never been inpatient before, but sometimes I wish I could just go away for a while and have someone figure this thing out. It always seems like a losing battle to try and combat a chronic illness in a 15 minute time window. I was seeing a neurologist, a fairly high up one at that - he was a professor at a prestigious medical college.

Thanks for the website CfMartin, but I don't know. Yes I would definitely have difficulty getting the funding to go to a specialist specific to POTS, but really I think there are only 2 or 3 such people in the country anyway. Raj at Vanderbilt, Stewart, and Grubbs. I'll look at what I can do, but I just don't know how feasible it would be for me to travel very far from where I live.

Vandi is 12 hours from me. I think its worth the trip after so many years of suffering!

[yogini]

Jangle, check out the dinet physician directory. While there are a handful of experts, there are lots of other docs with experience. If all your doc knew was Florinef clearly he was the wrong doc. Good riddance!

Edited January 21, 2012 by yogini

[potsgirl]

There are also autonomic specialists at the Mayo Clinic in Scottsdale, AZ, and Rochester, MN. I'm not sure about the Florida location. Don't give up! I called to get in to see Grubb, and his appointments are a year out. Depending on where you live, consider the physicians on the Dinet directory, as Yogini suggested.

[bunny]

I've been fired by three Drs myself.

The first was a cardiologist. After a battery of tests including a very positive tilt test, he wanted to do an implanted defib / pacemaker. I refused as I didn't see my symptoms as being that bad, and most of the medical literature I read said asystole due to this hadn't caused any known deaths. I also work around high voltages and high levels of radio frequency energy and the last thing I needed was my heart artificially thumping away to the beats of Rump Shaker as I'm working on the transmitters. Its too bad actually, as this Dr had one of the best bedside manners I've encountered. When I threw up during the tilt table test, he was the one wiping off my face and arm, even though there was a patient tech in the room.

The second was a GP who was furious that I refused to let a GI doc disembowel (GI wanted to remove both my large and small intestines) and even more upset that I was looking for a different GI doc. She did this via certified letter, which only made my own family angry with me.

The third was a GI who was perplexed by my symptoms and insisted that there was either a cancer or structural problem with my intestinal tract despite CT scans showing absolutely nothing wrong. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? He wanted to do an endoscopy, a colonoscopy, and exploratory abdominal surgery, all to be done on the same day. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? I was losing about .5 lbs a day and felt like death warmed over and my vitals showed it. Bp was something like 82/52, pulse was near 40. I was getting annoyed with his insistence, so I challenged him - bring his anesthesiologist in and see if he was willing to put me under. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? After waiting for awhile, the gas man shows up with the Dr, takes an automated bp reading, then breaks out a stethescope and manual cuff and takes a reading. He then asked me about my weight loss since the GI problems started happening. He then looks at the GI Dr and says there's no way he would even consider putting me under let alone do that many procedures at once with the state I was in.

As the nurse walked me out, she saw the post-it note on the outside of my chart referring me to one of the major teaching hospitals in the state, some 4+ hours away. She point-blank asked me if it was because he couldn't do a procedure on me here. She continued to say it was because I wasn't going to be a profitable enough patient for him. I was dumbstruck by her bluntness but it became apparent why she was being so honest. She had already put in her 2 weeks notice and was sick of seeing the Dr perform unnecessary procedures.

Where do I stand today? No pacemakers nor defib, and my GI tract runs fine, without surgery. Not on any meds either. Scares me to think where I'd be if I went along with the doctors' advice. I'd likely be dead. You can only live on TPN for so long, and I can think of far more enjoyable ways to die from liver failure rather than TPN.

So, like kayjay suggested, a doctor firing you may very well be the best help (and best for your health).

[ramakentesh]

I also work around high voltages and high levels of radio frequency energy and the last thing I needed was my heart artificially thumping away to the beats of Rump Shaker as I'm working on the transmitters.

Sounds like a cool job!

[hilbiligrl]

i've waited to share this but here goes: My doc of about 10 years was not only my primary care doc, but also my friend as well. I trusted him/her. For years she was concerned at what was going wrong with me..... she/he sent me to every test she could think of.... all were repeated year after year...... she/he also sent me to specialists. Long story made short, this doc was very controlling, did not think outside of the box and never tried anything different than what protocal was taught to him/her. The last 3 years of him/her as my doc...... took a bad turn. His/her body language, they way he/she talked to me, and just looking into his/her eyes, i could tell, i wasn't being believed. During some acute attacks, i would lose weight so fast that it was scary, i was accused to taking meth..... i dont even know what meth looks like or where to get it.... i was then forced to take regular drug screening tests... all of which i passed..... nonetheless he/she was always judgemental, condenscending, sometimes very rude and very controlling. I asked to be sent to vanderbilt and this doc refused..... .so i had my family to take me against her wishes..... came back with a diagnoses of 'autonomic dysfunction' and doc said it was 'absurd' as doc had never heard of such. Nor would doc agree to consult with vandy. I told doc, not a problem (on my last visit) and that i will find me another doc who believes me, who doesn't accuse me of things, and who can think outside of the box and that he/she was fired.

Well, he/she got so mad that i was sent out a registered letter stating that he/she fired me. What a shock...... could he/she not stand the fact that i stood up for myself for the first time.... or was it that plus an ego trip...... i wanted so much to fire back a letter, but then decided, it wasn't worth my energy or time to even think more upon the matter, as i had already submitted my case to a rare case doc and was waiting for his reply.......

thankfully, my new doc, an intergrative doc and a professor at our local college of medicine, researched my long medical history and took me on, even when he refused to take any more patients the previous years and still doesnt take any new ones on.

I could have wrote back and said, thanks for the letter but i already found my doc before i even fired you first.... but well, that's childish.

So..... i've been there, done that. I will say, it was very traumatizing at the time, and it was traumatizing for quiet a long time after. It's been a year since, and i never think about it. Im sure one day, someone will make him/her feel exactly the way i was treated and made to feel. I believe in karma.

Try to find an integrative doc.... they have open minds, take various approaches, instead of just conventional methods..... It took me over 9-10 years to find a real truly good doc who wants to fight this along with me...... i've had him for over a year now and still am thankful every day for finding him.

good luck!! don't let it bring you down!!!

[sandymbme]

I have been there, and as another poster said, it truly was for the best in the long run. She told me rather bluntly she could not continue to manage my care because I had just grown way to complicate, and with her (admittedly very large!) patient load she could not manage me the way I needed, coordinating care, and being the "gatekeeper" over my meds. I ended up interviewing several, and got really, really luck finding my PCP who was just starting out in private practice, but had been an ER doc for years. So she had seen all kinds of bizarre issues over the years, and was unfazed by me. She goes to conferences several times a year, constantly seeking to expand her knowledge. She has never given up on me, and even with my laundry list of illnesses, she is still convinced that we can eventually find the best combination to give me the most relief possible. Like night and day from my old doctor, I had really liked her personally, and didn't want to lose her, but I have since learned it was truly best for my health in the long run!

[Dizzysillyak]

Like so many others have said, I used this opportunity to find good doctors. I see an integrative

doctor who's trained in traditional medicine as well as holistic so I get the best of both. Sometimes

drugs work better and sometimes supplements and diet are needed.

On a funny note .. We have a local doctor known for doing this and we all just laugh now when someone

else gets fired. Tc .. D