Mountain Out Of Molehill Re: Dr's???

[Poohbear]

I know you all aren't Dr's but will you give me your objective opinion?

Am I making a mountain out of a molehill and simply don't have good coping skills or am I "right" and all these Dr's just ignorant and lazy?

My cardio still has not called me back (see previous posts by me if you need more info). I do have someone calling their office this morning on my behalf. I think my cardio's response is going to be "I'm sorry you are passing out more but there's nothing more I can do for you" He has said that to me before in the past but I believe he is wrong. He could at least fight for me to get outpatient iv infusions or home health or something.

I think in the cardiac world my condition is viewed as minor and not serious. I have extreme tachycardia with a normal rhythm = unpleasant but not serious in their eyes.

I went to an internal med. Dr yesturday. He acknowledged how crazy it was that my heart rate and bp were so erratic but seemed to understand it was autonomic dysfunction and knows he knows too little about it and thus expects my "specialists" to treat this. When I questioned if his office would be willing to coordinate my care and help me he said I had too many specialists to coordinate. Right now I have 6 or 7. I told him the reason I had so many specialists was because the former Dr I saw in his practice said she wasn't comfortable treating this condition and told me to stick with my specialists for care. Then after hearing all my more recent GI issues referred me out to yet another specialist. So while he was somewhat critical of the # of specialists I have he also seemed to understand it's inevitable when dealing with autonomic issues and referred me out to another specialist

Bottom line....I'm not much better. Still throwing up every day, passing out on a regular basis, blacking out even when I sit up etc. and yet I feel like they are all brushing me off.

That makes me wonder.....am I expecting too much? Am I supposed to adjust to feeling this crappy and not being able to be up moving around and prepare myself for the next lecture which will be if I lay around I will make my orthostatic intolerance worse? (which is it??? Do they want me to try to avoid syncope or not????)

[Guest Belinda]

Hi Lauren..I am sorry your having such a rough time with incompetent docs..the thorwing up everyday thing is not good of course you know that..have they given oyu phenergan or anything to see if it helps??? I think that most docs. just don' tunderstand the magnitude of our problems as benign as they seem(like erratic rhythm and vomiting)..I had a neuro tell me that POTS isn't disabling...I caught it amidst feeling terrible and said" Is it not disabling for you???,Do you have to go home to your family and lie down every five seconds??) needless to say there is nothing we can do but keep searching and hoping to find a doc. with compassion besides skill..

Too hard to find..LOL.

Keep your head up/down and your face out of the toilet okay??? Hang in there..BIG hugs to you!

Belinda

[corina]

hey ppoh,

i am so sorry that you can't find the right doctor. i think you deserve one! at least you should have someone who coordinates your care but i know how difficult it is to find such a doctor.

hope you will feel better soon,

corina

[Clairefmartin]

Poohbear...keep fighting for your rights! Have you thought of getting a lawyer/advocate of some kind that can help??

I have seen soooo many doctors that have blown me off, and I have kept going to new doctors until I have finally (I hope) found the right ones. There is someone out there who will help you and will do it gladly, you just have to keep looking.

Your symptoms are bad right now, and you have a right to care. I would seriously consider contacting a lawyer or even your insurance directly to tell them whats going on, and see what they suggest.

Get a new cardio! Get a new PCP! THey sound like they stink.

Hugs! I'll be thinking of you

[MightyMouse]

I couldn't say if your docs are in the right or in the wrong--I can only answer from my perspective. Personally, I wont tolerate any doctor who is dismissive of how disabling my symptoms can be at any given time. Some days they are just a pain in the behind, and other days the symptoms completely slay me. I can't always predict how my day will be when I start out--although sometimes I can--especially if my dizziness, off-balance feeling, along with nausea begins in earnest before I get in the shower in the am.

Anyway, if a doc of mine is not good with follow through, or is just plain not-so-interested in helping me remain functional, then I ditch them and move on. It took me more than 2 years to replace my gp who moved away, and several tries later, I have found a good, proactive, caring doctor... and tossed the ones before her onto the trash heap.

Same goes for specialists. Took me MANY tries to find the right Gastro. Many tries to find the right GYN. Many frustrating attempts to find an EP cardio who had a clue or was willing to buy a clue (Vanna, where are you? ). I was fortunate to get a great neurologist on the first try. I'm with my 2nd pain management group, the first was a waste of time and $. I'm with my 3rd allergist, 6th ENT doc, 2nd pulmonologist, and 4th dermatologist (and EDS necessity). I probably left out a few, but you get the idea.

I've mentioned this before, but I always find that a faxed question to the doctor's office tends to get a better reply time than a phone message. In fact, my neuro has told me more than once that he appreciates the fax b/c the receptionist isn't always completely accurate in writing down the questions, and sometimes delays giving them to him. I actually heard him yell at her one day b/c she'd decided my call about a migraine that wouldn't go away wasn't an emergency--and he was furious b/c she'd left me go in pain for several days before he got the message.

Doctors are simply human beings, with all their good and bad features, who went to school for a little more time than you. It doesn't make them better at communication skills--so it's important to be proactive. For me, if a doc doesn't meet my medical needs or falls short at effective communication in a timely fashion (keeping in mind they are pretty busy), then I move on. I always feel badly for those of you who have very limited choices for doctors because either you live in a more rural area, or your insurance coverage is minimal. I feel very fortunate to live in a metro area that gives me many choices.

Good luck with whatever step you take next. Sometimes it helps to tell the doc about your disappointment with your care--I did that with my neuro, and honesetly, he had no idea that there were delays in his getting messages from me until that moment. You never know until you ask. Nina

[Jenn202]

I have had to bang down 100's of doors to get just a few Dr's to help/ understand me through the years so I am sure you are not off base.

Unfortunately I have learned that with anything chronic or poorly understood by the medical community you have to be your biggest advocate and be the one to take charge of your health..That was such a scary concept for me to come to grips with years ago b.c before I became ill I always thought you got sick...you went to a Dr...they helped get you better..... Its so frustating to realize its not always that way.

I never give up with research and trying and exploring different options.. I honestly am not object to anything b.c some of the craziest things have been the things that have helped me.

Medical Dr's unfortunately are not available the way someone truly needs them to be. I finally after many years got a good GP (took a long time )and found a good Lyme Dr, and a good Neurologist.... those are 3 out of about hmmmmm 50 or so I have sought out..... they are out there in a big haystack! LOL

Dont be scraed to voice your opinion and be blunt about what you need to be well. You are paying them for a service, and you have a right to feel you are being treated the way you need to be.

Take care and I hope you are able to get some amswers very soon.

[Guest Julia59]

Poohbear,

I'm sorry your having such a rough time finding the right docs. I do the same thing Nina does, I just get rid of the docs that don't work out, and find one that understands this stuff, or at least tries. It's not always that easy, as some areas of the US just don't have Docs that know about ANS dysfunction/dysautonomia.

I know someone in Colorado who is having a rough time getting the right care for herself. I live in Toledo as you know---and it's not easy here either. Although it is a smaller metro area-----------there is still a lot of ignorance here too-----even with Dr. Grubb near by. I finally found a PCP who seems real interested in dysautonomia. She even asked for the web site information. I will also take more educational information to her when I go for my full physical on May 4th---just to insure she does look into it.

Some docs just don't believe ANS dysfunction/POTS is anything serious. WEll----they couldn't be more wrong. Especially the long term effects from constantly low---(or high) BP, long standing tachycardia----those alone can cause very serious problems. I've met all kinds of people with ANS dysfunction---and some older folks 60s/70s who developed ischemic heart problems from long term blood volume problems.

I'm not saying this will happen to you----but I am saying this is something that needs to be taken seriously.

I do not think you are stable right now, and you at least need a doctor who will help manage your symptoms better to take the strain off your heart, and give you a rest. you live alone---and your passing out needs to be taken very seriously. I'm sorry your cardiologist hasn't called back yet----I hope the person calling in your behalf get's somewhere.

I don't think your expecting too much-----you just want to be stable---and able to sit up.

Keep us posted if you find out anything......

HUGS,

Julie :0)

[Dizzy Dame]

Pooh,

I think you should be taken seriously. Vomiting every day and passing out when you sit up are quite serious. You may want to consider going to an ER to get some IV fluids to tide you over. I know you probably hate hospitals, I do too, but I think you're just going to keep getting worse if you don't rehydrate.

I also wanted to say that anyone who things regular vomiting and syncope is only an "inconvenience" needs to get their head checked.

Hugs,

Lauren

[Lukkychrm42]

Well, I don't think you're crazy.. I wouldn't be able to say if your cardio can help you or not, but if there are things he hasn't tried then it would seem logical to try them if benefits outweigh the risks.

In my experience, with cardiologists who aren't real dysaut. specialists, because they deal with so many patients with life threatening issues, since POTS isn't generally life threatening, we're lower on the scale of importance. Those doctors who understand the comparison of quality of life of POTS patients to those with heart failure or RLD, on the other hand, are more likely to find it necessary to treat our symptoms.

But that sounds like the doctor in England I saw who said that fainting teenage girls are along the spectrum of normal (whatever the heck that was supposed to mean. grrr...). Fainting isn't an inconvenience- it can be quite dangerous!! And the symptoms going along with it debilitating.

Sorry you're dealing with this.

[Guest Belinda]

POOHBEAR----I just realized I called you Lauren...could that have been a brain fog moment..Sorry..