Basically Lost Doc Of 23 Years

[morgan617]

As some of you know, I live on the western side of the states. No ans docs here. But I have had the same pcp for 23 years and he has stuck by me through all my ups and downs, mostly downs, for the last several years.

My last appt got cancelled, and they rescheduled. I went in and the first thing he said was, "you are not fired" My first thought was, oh no.

He has been hired by the hospital as an intensivist. he is the head of their dept anyway, so it should be no big deal. But they have decided that he can not see patients on the days he's on call, which is every third day. So he sees patients two days a week now, from 10-4. About 98% of his patients are medicaid and medicare. I am one of the few that has actual insurance, covered by my husband. He is having to "pare down" his patient load, accordingly.

So he said, he had to be my doctor, because no one else would see me. I said they see me as crazy, and he said yes, and you are, but it's because you are sick. I have to keep you on, simply because you won't have a doctor here if i don't, but i don't know when i can see you. I offered to leave the practice, but then he couldn't give me my meds. I said it's easier to say I'm crazy than to try and figure me out. he was writing and said yes it is. So I said, it's easier on everyone else, but it is not easy on me. he stopped writing and just looked at me. I have no idea what he was thinking. I am up to 60 meq of K+ a day, just to stay at low normal and not paralyze.

I have to tell you, I am quite devastated by all this. I had to cancel 4 months of appts, and have no idea when I will be seen again. He will "call me" if he needs to. Well, why would he need to? There are no doctors i can transfer to in my town. I still have my gastro, but he has made it clear he will deal only with gastro issues, period. I cancelled my next gastro, which i was having every eight weeks for strictures. I eat Gerbers #2. (I now understand fully why kids are traumatized by food)

I have an ENT that sees me for my meneires, but says there's nothing more he can do for it. I just have to deal as best i can. My records show all those swell diagnoses of anxiety, conversion, munchausen, panic, somatization, hystrionic, psychogenic...i think i could be in the Guiness book of world records for having the most psych disorders of anyone else on the planet. The only two i can think of I haven't been diagnosed with are schizophrenia and bi polar.

I find it amazing that they require no testing to decide you are crazy, but abnormal physical tests mean nothing, if they can't figure them out.

So, basically, our 23 year history is not the reason he is keeping me on, it's just that he can't find anyone else to take me on. I am assuming the rest of my life will be treading water on my own....and my lifeboat is leaking or something.....what a flippin bummer................sinkinfastmorgan

p.s. wouldn't you know 2000 mark on posts and it's a bummer one....

[Sophia3]

Morgan.

I can ONLY imagine how this must make you feel..I know you have become so dependent on the one doc that has seen you through so much,

I just wanted you to know I am thinking of you and hoping you guys can think of some alternative plan.

I can't imagine losing of good doc of that many years....kind of like a death and another grieving deal.

Hugs to you across the country.

And I hope you can still get all the meds you need, too.

[Dizzy Dame]

Oh Morgan! I'm so sorry. I know it feels like you're being abandoned, but hopefully things aren't as bad as they seem. I'm sending you big cyber hugs though!

Have you seen a psychologist? I have a therapist who has actually written letters to doctors telling them I don't have any psychological problems that could be causing my symptoms. While I do have a great team of doctors who recognize my poor health is physical, the letters have helped with some specialists I've seen who think otherwise.

Maybe you could do something similar?

Anyway, I'm sending you lots of positive thoughts. Hopefully things will feel better soon!

Hugs,

Lauren

[morgan617]

Thanks, I actually do have a therapist who has suggested, in writing, to doctors that they stay out of her field and she will stay out of theirs. She states i do have depression, but only the normal depression you would expect with a person who is chronically ill. I do not fit into the personality pictures for all these diagnoses they throw out willy nilly.

However, it has not helped. I was told by a neuro that my therapist didn't know what she was talking about and the psychiatrist that came to see me, that basically agreed with her, was just wrong. He (the neuro) knew much more about this, as he diagnoses psych disorders in people several times a week. So this is what i am dealing with here.

I guess I have really been grieving this as you say sophia. it happened last week, and I have really crawled into a little ball in a tiny hole. There's really nothing to be done, but guess i decided it was time to mention it. I am really disappointed with Dan, as i thought I could I really trust him, and now another one bites the dust. Oh well, the life of a dysauto starlette, what can i say????

[Rachel]

Dear sinkinfastMorgan,

I'm so sorry that this is happening to you. It must be devastating, especially after seeing him for 23 years. It is hard to be stuck - needing care, but unable to find it.

You said you've been diagnosed with lots of psych disorders. Have you ever been to a psychologist to get that straightened out?

Climb aboard the DINET lifeboat. We won't let you sink! Hang in there.

Hugs,

Rachel

P.S. Congratulations on 2,000 posts. Sorry it's a bummer one.

P.P.S. Whoops, I guess you posted your reply while I was replying to the original post. I'm sorry about the neurologist "overriding" what the therapist and psyciatrist said. That just isn't right. What a frustrating thing to have to deal with. So very sorry.

Edited February 20, 2007 by Rachel

[jlmahon]

Morgan,

Would it be possible to get a referral to a specialist who deals with autonomic issues? I'm asking because I went through years of being told I had panic disorder, depression, etc. It really bothers me when doctors label us with mental health disorders. It's one thing to have a mental disorder and be treated for it, but, to be labeled with one is just wrong. I'm just thinking it might be a good idea for you to get the real diagnosis on paper in case you end up having to find another primary care doctor. I hope your current doctor sticks around longer to help you, sounds like he is helpful to you.

Jenn

[morgan617]

Hey jenn, after my ablation in 2003, I was rejected by Vandy, NIH, and Mayo. Dr grubb was going through a bad time himself at that time also. They are thousands of miles and millions of dollars away. They never gave an explanation, i can only assume, after the ablation, for a short time, my tachy abated. it's now back full force, but I am too sick to travel that far. My pcp told me repeatedly he would do anything to get me into one of these guys, but they never returned his calls to even discuss me with him. it's the somewhat knowing leading the blind but willing. We sent my records 3 different times.

There are no specialists anywhere in the Pacific Northwest. My cardio is the only doctor I've ever met that knows what periodic paralysis is. I have seen 3 separate therapists who all state i am reacting normally to very unfortunate circumstances, but that does not sit well with doctors who have ego problems. I have seen psychs picked out for me that i have never seen before. But once you have that stigma and they can pull it up, it's so easy to pull it out of your behind again.....

I have officially been diagnosed with OCD (since childhood) situational depression, and mood disorder secondary to chronic illness. I have no problems discussing these problems. But they look past that to that ER doc that said I had a flat affect (I was passing out) therefore had somatization. Paralysis, when seen by people who haven't heard of PP is conversion disorder, regardless of the fact that the whole point of conversion means there's nothing physical going on at the same time. (When i paralyze my bp doubles, as does my pulse, my face and neck turns a blotchy red color) however, going from 150/90 to 230/120 in 2 minutes is always "anxiety" and as the neuro said, your "software can do anything to make your hard drive crash"

So this is what I deal with and have to look forward to. I asked my pcp to at least rule out aldosteronism as I have all the classic symptoms, but he said it was too rare, so i wouldn't have it. it would have been a validation, but we will never know.

I appreciate the suggestions, but trust me, I have tried them all. In the ocean of ignorance i live in here, i have had to be very cranky and a self advocate a whole lot. i just really needed to vent a little I guess. The support is wonderful and validating, I'm just sorry validation doesn't make people listen and doesn't change the situation.....I suppose i will adjust to this, just as I've had to adjust to everything else....I'm used to my body betraying me left and right.....this was just more like a blind sided moment, you know....Time to buck up...thanks again....divorcedbyherdocmorgan

Em, please call whine-1-1 and get me a whambulance......

[Guest tearose]

I am so sorry for the loss of this good physician for you dear morgan.

I know it seems impossible now, but in time and when you have the energy, you will find a new doctor. I just believe it will happen! It must or you are just going to have to pack up and move! (not really, but we do have a hard time finding the good docs.)

Can you take the remaining time you have with this doc and tie up loose ends? Like look into any unresolved questions and dx?

sending you strength, tearose

[MomtoGiuliana]

So sorry morgan.

Where is the closest EP? I hope you have an advocate in your life who can help you identify the next step.

Katherine

[Guest GayleP]

Thanks, I actually do have a therapist who has suggested, in writing, to doctors that they stay out of her field and she will stay out of theirs.

Amen to that. Your therapist is correct. Doctors need to stop playing therapist and stick to what they know best.

Anyhow, I'm so sorry that you have to deal with this Morgan. I hope you can work something out with him. Or that you'll eventually find another doc who will be an advocate and who will believe in you.

[masumeh]

Hi Morgan,

Since this is a kinda old post now, I hope you're feeling better by the time of my reply.

First I just wanted to comment that I feel for you, and I know that you've been through a lot, obviously struggling hard to cope and have patience. Hang in there!

Secondly, I wanted to recommend that you try to find your own solution, because depending on doctors isn't always the answer. I'm not trying to be anarchist to the current medical system or anything...but even as a nursing student we learnt about the medical benefits of self-efficacy, the patient's feeling that he/she has control and power over his/her own health and care. As a psychology student, of course, we also studied this issue, especially in learning...but every part of life is effected by your self-efficacy, self-esteem and self confidence (all different slightly from one another). As a depressed person, you probably feel inadequate and loss of motivation. But, until you can rely on yourself, you won't find real help...because you're the one who knows yourself the best, and while it's beneficial to have validation and information from reliable medical professionals, it seems that this is a closed route for you so far. You still have yourself!!! What I did, that might or might not work for you, is basically I considered myself my own experiment and I just did whatever seemed to work until it stopped working and then tried whatever else I could think of. On my own, without a diagnosis or meds or a doctor of any kind, I got my fainting down from once a day to once a week. And I know that it is also the course of the disease itself at work, but I developed a lot of coping mechanisms (just a small example, I drank about 5 glasses of water by 8Am alone, not consciously but when I counted it, it was like that...just did and did until something worked). I'm not smarter than you or even more patient...and I'm sure I don't want it any more than you do....so I know that you can help yourself also. Not a cure...but at least a change. Good luck!

masumeh

[yogini]

Hi Morgan,

I am so sorry this happened. I can only imagine a small fraction of what you're going through. I have had minor traumatic experiences with doctors - the last one was a year ago, and it took me a year to look for abnother doctor - and that was only after I had missed work for a month. I think when these incidents happen, it is really demoralizing and you need to take time to grieve.

I hope you will at least continue with your gastro appointments and touch base with your cardio. Maybe he could suggest another PCP or be able to take over managing things?

-Rita

[corina]

morgan,

i'm sorry to be kind of late at this, just wanted to think of something comforting to say. it's jsut that i couldn't think of something. i know how much you have struggled and how this doctor always was at your side, and how important it is to have at least one doctor believing in you. i am glad that he will keep you as his patient, but i'm afraid it won't be enough as at his "hospital days" he won't be able to see you if necessary.

i'm sending you a big hug and all my best and hope that time will help you find a really good, helpful and trusting new doctor,

corina

[Sophia3]

Well, to whomever posted we are our own advocate, need to be in control etc. That's all well and GOOD,

Many here have severe gastroparesis and DRINKING A LOT of anything can trigger vomiting. Hence fluid building via drinking is not a good thing. Many of us DO have the gift of being able to drink lots of Gatorade or other fluids. But if you have vomiting bouts from doing so, it can make you sicker.

So many "home remedies" do not work for EVERYBODY.

While it IS our responsibility to learn to COPE with years of illness, it is still a shock and a major grief provocation to lose a doctor of TWENTY THREE YEARS.

And, no matter how self empowered, or self sufficient we need to be, whether you have strictly PHYISCAL problems or EVEN mental issues, often MEDICATION IS NEEDED.

Writing one's own prescriptions can get you arrested and thrown in jail.

So Morgan knows how to deal with things but when you have a pacemaker, need Potassium prescriptions, among other things, having a doctor to PRESCRIBE such meds is critical. Even if a doc is clueless if he will provide the medicines that is a gift in and of itself.

Best of luck, Morgan.

[MNsue]

Morgan,

Sorry to hear you lost your MD. When you are so ill, you really need someone in your corner. You are in my thoughts.

Rhonda

[P SUDIK]

Morgan, you have been here for so many of us, we are here for you. I know some of what your dealing with ,having had many "dr.issues",since having POTS. I want to offer my support,pls e-mail anytime! I am sending you lots of hugs. Also ,I wanted to tell you I enjoyed reading about you in the news letter,and feel like a I know you just a little better now. Thinking of you Pat

[morgan617]

Thanks everyone (that picture is mortifying pat, but it is me on a typical day, unfortunately,LOL)

I just want those that don't know me to understand that I have been a complete advocate for myself for a very long time. I get all the info and present it to my doc and tell him what i need. I tell him how much of a med I'm going to take, the reasons I won't take one, what tests I need, just about everything.

I know more about this disease than any doctor in this town. The problem with losing this doctor is, he supported me on all this. He has enough confidence not to be put off by the fact that I DID control the aspects of my illness. There will never be another doctor like that for me. And after 23 years, we were sort of like an old married couple. So, it's just sad. I do take care of my meds and stuff myself and i do figure out what works and doesn't work.

This is not so much an invalidation and self esteem problem, as it is, a grieving problem for me. I guess i never really thought it would happen with him, that's all.

I do appreciate everyone's input and support. Thanks....I went in my whaaambulance yesterday and then said...get over it...so hopefully will bounce back soon.....morganzillaontherebound

p.s. I can never figure out how you guys can drink so much...good Lord.....I'd be hurling out of my gut and urethra all day.... All that potassium leaving my body at the speed of sound...