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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 25. This is the beginning of the thread.
Posted by WaterSapphire on August 31, 2008, at 6:27:37
I had built up an image of this one nephrologist.
One of only two I had seen. I could go back to him still, but I am still having very very hurt feelings. The last one I saw, well she was not in my opinion very good to say it as nicely as possible.
My shall we say ex-nephrologist in a way broke my heart. I am married and in love with my hubby, and it has nothing to do with it. I searched and searched high and low online trying to find someone who knew about electrolytes and was well versed with the literature. Of all the other doctors I thought could help me, I still feel that he was my last hope. He had written research for books and such on different things such as magnesium and potassium. I was so hoping he would help me. But the second appt. I had with him, his pat assumptions and somewhat shall we say rude and argumentative behaviour caused me to never go back for further testing after I had cut down on my sodium and was still getting sick and weak.
(an abnormal 24 hour test showing wasting of things). I am ok, but yesterday I was online searching for his research and found he had started a blog even. He is into patients supposedly being part of their treatment, but I feel like he just saw a fat, crazy sick girl that he did not really believe. I am more honest than anyone else I know. SO honest, that I have been shunned in life because of my honesty.I just wish he could help me find out what is wrong, because he has the brains for it.
Posted by seldomseen on August 31, 2008, at 9:38:11
In reply to I feel dejected because of my one nephrologist, posted by WaterSapphire on August 31, 2008, at 6:27:37
If you are truly convinced that this nephrologist can lead you to wellness, then I think you should go back.
I will be the first to admit that it helps if we like our physicians, and it is even more important that we think they believe what we are telling them.
However, if you think this guy has the skills to get to the bottom of your problem, then I would give him another shot. Be sure that you tell him that you have looked at his research and record and that you think he is the one. They love that.
One caveat, researchers tend to form theories. Not all of them, but some, tend to adhere to those theories and can be a little dismissive if a patient presents with symptoms that don't support them. It happens. And is something to be aware of.
You say that there was evidence of wasting on a 24 hour analysis. Could you be more specific about that?
Seldom
Posted by Phillipa on August 31, 2008, at 11:08:31
In reply to Re: I feel dejected because of my one nephrologist, posted by seldomseen on August 31, 2008, at 9:38:11
Is your creatinine low that could be muscle wasting is that what you mean? Phillipa
Posted by Racer on August 31, 2008, at 12:19:03
In reply to Re: I feel dejected because of my one nephrologist, posted by seldomseen on August 31, 2008, at 9:38:11
I have this view of you as truly brilliant -- stellar insight, superb verbal abilities, amongst the most reliable voices of reason we have in this community -- and you know why? You so often save me the trouble of expressing the same ideas, with far less elegance and concision.
And it's a funny thing about doctors and perspective, too -- I was once diagnosed over the telephone, via the receptionist, by a doctor who had created a reputation for himself in one small area of his field. Despite having an existing diagnosis for the problem, which was adequately supported by objective evidence such as imaging studies. Sometimes a doctor hears what sounds like hoofbeats, and doesn't consider that it might be the Monty Python guys with coconuts -- even if they're in a cinema at the time.
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For me, it depends -- my dentist is adequate, and I'm willing to drive more than 50 miles on the most congested freeway in the area to see him. Similarly, I like and get along with my psychopharmacologist, which I consider vital to the outcome of my treatment. I had a colonoscopy last year, and just didn't like the GI guy whom I was referred to -- so I'll see another next time. I fired my last rheumatologist because his personality bothered me enough that he could have walked on water and I wouldn't have put up with him.
All these examples, though, have something in common: the outcome of treatment has not been life-threatening, so it was a valid choice to decide the relationship with the doctor trumped other considerations for me. (Except psychopharm, of course, but there the relationship really was vital by the time I started seeing this guy.)
If I had a brain tumor, and the most talented neurosurgeon in the area was an arrogant jerk - this example, by the way, because is based on something an acquaintance experienced nearby a couple of years back -- I'm have a hell of a hard time with it. I'd be frightened out of my wits by the whole process. And I'd find some way to get through it, because the consequences are more important than my emotional reaction to any individual. (It's also not an ongoing relationship, which helps.)
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As for WS and the nephrologist -- there's a really great book called "Bedside Manners" about the ways doctors fail patients in the way you're describing. According to the research cited, doctors start to tune out what patients say after -- well, I forget if it was 8 seconds or 13 seconds, but either makes the point. Doctors really don't always listen to patients, and patients have something they want to say. It's an unfortunate situation, but it's also what we have to work with.
So, how to deal with this guy and get a successful result? I've had good luck writing an outline of what I need to say, making a summary list of any relevant tests, signs, symptoms, etc, and basically trying to get his attention in that first ten second period. My experience has been that I've been pretty successful with this -- I see the eye glaze starting about the time I finish saying, "Hello, I'm here because |" but then I'd see that being replaced by engagement once the outline was in play. I even got a more complete hearing when I did that, because I'd have the list to go down, and then the doctor would take what was most relevant and ask other questions about it. I very highly recommend that process, just because I've had such good results from it. (Oh, and signs count more than symptoms, at least until the doctor gets to know you better.)
Also, a lot of doctors do dismiss a lot of what a lot of women say. I won't make any editorial comments about that, only say it's another obstacle to good care in some cases. One option is trying to get a doctor with whom you have a good and well-established relationship to intervene for you. That has also worked for me. And if you can't, rehearse saying "Please listen to what I have to say," without any defensiveness or submissiveness or aggression or resentment. Channel your Inner Vulcan to speak to the doctor. Suppress any emotional reaction when you address the doctor -- just the facts, ma'am, and not too many of them.
And then go have a margarita with a girlfriend and joke about what sorts of identity issues led this guy to that sort of reaction to women. Dismiss him in a way that doesn't interfere with the treatment of your problem, but does relieve your distress at it. Whistle into the wind.
And just as a random note -- man, I talk too much... Even in writing...
Posted by WaterSapphire on August 31, 2008, at 12:21:44
In reply to Re: I feel dejected because of my one nephrologist, posted by Phillipa on August 31, 2008, at 11:08:31
I was wasting salt and things like potassium and magnesium along with it. He said it was because I was eating large amounts of salt and that it was the cause. But, when I have not been eating large amounts of salt, I am still having the problems that I went in with. Because I have high bp, he did not look into other possible causes and he knew I had abnormal salt cravings before he ran this test and had brushed it off as part of the american diet until he saw my abnormally high salt excretion and automatically assumed it was only because of an intake of the sodium. He did not bother to see what the cause of the abnormal cravings that I get here and there were from.
Posted by Racer on August 31, 2008, at 14:40:28
In reply to Re: I feel dejected because of my one nephrologist, posted by WaterSapphire on August 31, 2008, at 12:21:44
> I was wasting salt ... and automatically assumed it was only because of an intake of the sodium. He did not bother to see what the cause of the abnormal cravings that I get here and there were from.
>
>This is very hard for me to write, because I'm afraid it sounds as though I'm invalidating your experience, when I'm actually trying to help you reframe it from a more positive perspective. That's the disclaimer.
The doctor isn't all wrong on that.
Now, he was significantly ineffective in communicating a lot of what I'm about to say to you, and he probably was writing you off to a large degree. (No use trying to pretend otherwise, when that's been my own experience, too, so many times.)
First of all, MANY people can't give an accurate account of their actual sodium intake. (Or, for that matter, their intake of any dietary element.) The sugar free soda I drank today has 35 mg of sodium. The three varieties of diet soda my husband drinks regularly have 35, 70, and 130 mg. There are many sources of sodium we wouldn't think of when we try to estimate. I have an aversion to the taste of salt on most foods, so I don't cook with added salt, and I don't salt my food at the table. I'd estimate my sodium intake to be within normal limits, and probably on the low side of average -- but despite my avoidance of table salt, I won't try to tell a doctor that my sodium intake is below recommendations, because it probably isn't.
Why am I saying all that? Because the next thing I'm going to suggest won't make nearly as much sense if I don't explain that.
In your situation, one thing I'd include in your little self-chart package is a detailed and complete food journal, with sodium content of all those foods estimated as accurately as possible. Give a daily total in mg, and a daily average over about two weeks. You might find that there's some validity to his theory. He might see that he jumped to a conclusion. Kinda depends on what the food journal shows.
Also -- although this guy doesn't seem to have treated you with anything resembling an effective bedside manner, sending you home with the advice to limit your sodium intake, which I assume he did, is actually pretty reasonable standard of care. Despite my thing above about hoofbeats, when you hear hoofbeats, it's mostly gonna be horses. So, he's clarifying the picture -- if you limit your sodium intake, and you document that adequately, and you go back to see him again, he's ruled out one common cause and will have to move on to a less common cause. Ruling out causes is often important.
There's another thing I don't know that I said, though -- I was a little concerned at first that you were putting so much faith in this guy. Research or not, published or not, he's unlikely to fulfill expectations set quite that high. Examining both what expectations of him are reasonable and why you'd invest so much in your expectations of him might both be interesting and productive exercises for you.
Good luck
Posted by susan47 on August 31, 2008, at 14:53:37
In reply to Funny how perspective works... +(»WaterSapphire) » seldomseen, posted by Racer on August 31, 2008, at 12:19:03
Racer is that the proper book link?
Posted by Racer on August 31, 2008, at 15:46:22
In reply to Book Link » Racer, posted by susan47 on August 31, 2008, at 14:53:37
> Racer is that the proper book link?
I edited my post after confirming the link, and totally forgot to confirm it again. Here's the correct link:
Posted by Phillipa on August 31, 2008, at 20:15:45
In reply to Re: I feel dejected because of my one nephrologist, posted by WaterSapphire on August 31, 2008, at 12:21:44
The salt rings a bell have you been tested for Addison's disease? Phillipa
Posted by WaterSapphire on September 1, 2008, at 4:54:22
In reply to Re: I feel dejected because of my one nephrologist » WaterSapphire, posted by Phillipa on August 31, 2008, at 20:15:45
Hey there,
Racer, please forgive the length of my post...but I am more detailed sometimes that others lol.Because of my emotional issues, I very well have had a hard time coming to terms with a lot of this (the doctor that is). When I first saw the doctor, I explained to him that I had been having abnormal salt cravings at times and had even gone so far as to drink pickle juice and hot sauce. He waved his hand and said it is not unusual for the normal american diet to contain so much salt. Well, I thought ok. But, I still felt I had abnormal salt cravings beyond the norm regardless of the cause and because of having had hypokalemia in the past with low magnesium levels I was concerned. He was an electrolyte researcher, and I felt he was my best bet for help because I had on my own gotten great improvements from taking magnesium and potassium, but having to struggle with them each day. On the first appointment he did not tell me to watch my salt intake, or to do anything for this 24 hour urine test. So, when I did the test, and he got the results back he was beyond belief and flabbergasted. (Please, forgive me if I have said this before.)He was like...Michelle...this is beyond textbook. This is all because you eat too much salt. I was like "I told you that I have abnormal salt cravings at times and that when I took the test, I had gotten into the pickle juice." I also clarified to him that I had been going to the little gal's room too much, was thirsty too much, and losing too much fluid. He got loud with me, and this is what hurt my feelings...the sorta yelling with "You are in denial, the only problem is is that you eat too much salt and you are wasting everything out with it". This small tirade of his went on for a bit. He told me to eat less salt. He told me smugly to post this sheet on my fridge so I would never forget and handed it too me with the numbers. See, it was so beyond normal that I was beyond what is normally in the texbook. I was supposed to go back and see him, and to get another test weeks down the road once I was not eating so much salt. I had lost the script and when I had asked the nurse at the office to have it resent they never sent it to me again. I was told to drink lots of water and not eat hardly any salt. He gave me no guidelines for milligrams, but immediately like the good patient I went home and really started looking at food labels even moreso. Because of my mind that works like an ongoing computer for certain things like obsessing over what I am eating, I usually am very good about counting what I have eaten for the day with sodium. When eating really low sodium, I got very weak and had to drink gatorade.
When eating middle of the road amounts of sodium, I still ran into the problems here and still had to take magnesium and potassium. So I went to a different nephrologist, and she was well...not helpful but I have another test to get run if I so choose. I would rather go back to him. I just felt so ashamed and humiliated because I was honest with him. I always so honest that it gets me in trouble. So, I put this here to work through this as well as for everyones help cuz I appreciate others feedback. I know so much, that emotionally I am not "normal" and that my reactions to certain things do not follow the typical every day person's. I am oversensitive to everything. SO, I am hoping after this endo. appt. my pcp is having me see this week, maybe if he runs some tests, then I can make a decision of where to go next. I am so scared. I am content, but scared of going to this new doctor. I had high blood pressure resistant to medication up until a few weeks back when it was high normal. I was told not to eat less that 2500 mg a day by my internist. He had to have gotten all my old labs by the last appointment I had with him. This week, I am going to get a bp cuff script hopefully from the specialist. As for the rest of it, I don't know. I feel kinda silly. But, I would rather be silly on here and get your honest opinion :)
Thank you by the way. I will try to keep it less wordy next time. I have to work on getting more concise...Have an awesome labor day
Posted by WaterSapphire on September 1, 2008, at 4:59:40
In reply to Re: I feel dejected because of my one nephrologist » WaterSapphire, posted by Phillipa on August 31, 2008, at 20:15:45
Hopefully the new endo will run all the tests necessary for adrenal and pituitary problems. With some of those disorders I guess, sometimes things take awhile for testing or are not so obvious. I know about addisons and such because I had read up on what I had been dealing with "salt craving" and saw that was one of the causes. So, even though the neph refused to check my adrenal glands...testing hopefully will start this week.
My serum cortisol was borderline high though. But anxiety can do all sorts of wonderful things lol. Yesterday, I could swear my bp went way too low. I got up and could hardly walk straight without almost falling over. It gets so tiring, even if it is all in my head. I always have to be prepared to find out it is all in my head. If that makes a bit of sense. Thanks for your continued responses Philippa. Hopefully someday I can be of more help to you to.Peace
and Happy Labor day
Chelle
Posted by susan47 on September 1, 2008, at 13:46:40
In reply to Yep, that was the wrong link » susan47, posted by Racer on August 31, 2008, at 15:46:22
> > Racer is that the proper book link?
>
> I edited my post after confirming the link, and totally forgot to confirm it again. Here's the correct link:
>
> "Bedside Manners"Sounds like fun.
Posted by Racer on September 1, 2008, at 19:56:50
In reply to Hi Racer, posted by WaterSapphire on September 1, 2008, at 4:54:22
> please forgive the length of my post
>I will try to keep it less wordy next time.
I understand, though -- if you hadn't noticed, I'm hardly the poster child for concision. (I do understand, though -- I always read those elegant, concise, insightful posts, and wish I could learn that. And am sometimes embarrassed by the length of my posts.)
Regarding the doctor -- it may be that this expert isn't the best choice for you. Just like the popular kids in high school, sometimes doctors get a little arrogant if a lot of people are seeking them out. I've had good luck sometimes going with the better bedside manner if the doctor who has it is willing to do a little research, you know?
Good luck with this -- I think discussing it here is a good thing. Getting a variety of perspectives, especially with the range of talents and experiences here, may help a lot.
If nothing else, at least you'll get a lot of support from some of us who have experienced less than respectful treatment from doctors.
Posted by Phillipa on September 1, 2008, at 20:05:10
In reply to Philippa, posted by WaterSapphire on September 1, 2008, at 4:59:40
Definitely as all my searches brought me to autoimmune disorders including thyroid, pituitary, addison's, and even parkinsons? Love Phillipa
Posted by WaterSapphire on September 2, 2008, at 4:01:24
In reply to You're kidding, right? » WaterSapphire, posted by Racer on September 1, 2008, at 19:56:50
Part of this post made me laugh a lot. The last sentence that is. Maybe it was not meant to come off that way, but I guess my humor is perhaps off lol.
Thank you for your honesty. I always welcome honesty and any help I can get right now. I also will give it whenever I can.
Have an awesome week...
Posted by WaterSapphire on September 2, 2008, at 4:04:00
In reply to Re: Philippa » WaterSapphire, posted by Phillipa on September 1, 2008, at 20:05:10
HI philippa,
In the end if the endo cannot help, I am stuck back to having to see a new neurologist. I would be so happy with just some relief at this point even if few answers. Answers are nice, but relief is better.:)
Posted by seldomseen on September 2, 2008, at 6:42:08
In reply to Hi Racer, posted by WaterSapphire on September 1, 2008, at 4:54:22
I did some research on the topic of abnormal salt craving, and this was the FIRST paper on pubmed (a national respository for scientific literature).
One thing that I was struck by, and I think you should be aware of, is that I was taught that there was no such thing as a salt craving. We would be driven by thirst, but not salt.
If your doc kept saying "this is textbook" then perhaps he needs to read a newer textbook, as I clearly needed to do.
If you would like to read the entire article just babblemail me and I can get it to you. I don't think it is freely available, only the abstract.
Seldom
Posted by susan47 on September 2, 2008, at 9:53:45
In reply to You're kidding, right? » WaterSapphire, posted by Racer on September 1, 2008, at 19:56:50
>
> If nothing else, at least you'll get a lot of support from some of us who have experienced less than respectful treatment from doctors.Absolutely.
Posted by WaterSapphire on September 11, 2008, at 22:01:50
In reply to Research into salt cravings. » WaterSapphire, posted by seldomseen on September 2, 2008, at 6:42:08
Thank you for taking the time to look up this for me. It sounds like an interesting possibility. I so have to wonder in my case how psychologically or physically based this is. Hopefully upcoming medical tests will determine this.
Sounds like an interesting article for sure...
Posted by Phillipa on September 11, 2008, at 23:57:21
In reply to Re: Research into salt cravings..Seldomseen, posted by WaterSapphire on September 11, 2008, at 22:01:50
Could you get the whole article I'd like to read it and don't belong to pubmed or seldom could you babble it to me. I also did a search but you're in the knowlegeable trustworthy sites. Thanks Phillipa and WaterSapphire when and what tests will be done? I always was thinking Cushings. Phillipa
Posted by Niniva on September 18, 2008, at 15:35:13
In reply to Re: Research into salt cravings..Seldomseen, posted by WaterSapphire on September 11, 2008, at 22:01:50
My theory on salt cravings goes this way: You are actually seeking lithium, as "salt" in nature would contain lithium salts.
Bipolar-spectrum diseases are extremely old and moderately inheritable, which leads me to think that salt cravings would have lead to a more tolerable existence prior to Morton's.
Posted by Niniva on September 18, 2008, at 16:32:15
In reply to Re: Research into salt cravings..Seldomseen » WaterSapphire, posted by Niniva on September 18, 2008, at 15:35:13
I've read the posts in this thread, and I'll tell you two things:
#1 - I learned a lot about salt cravings from "A Brilliant Madness," which focused on Patty Duke's Bipolar I, and #2 - everyone that I've talked to with either Bipolar II or Atypical Depression has expressed salt cravings.
I've stole packets of salt from fast food chains so that I have a little stash in my jacket pocket just in case I need it, and I've seen friends and relatives do the same.
I haven't read any controlled studies on the subject, this is entirely independent observation. However, I still consider salt cravings a litmus-test to determine if a kid is just angst-ridden (normal but needs psychological therapy) or suffering from a biological mental illness requiring meds. Salt cravings (so strong that you lick salt from your palm, or add it to gum, or suck on paper fast-food packets like chewing tobacco packets), indicate early-onset, chronic (life-long) mental illness, according to the salt-cravers that I've interviewed.
I know this guy feels (or felt) like the solution, but I don't like his manner. I'll tell you why: He sounds like he's afraid of being proven wrong or "discovered" as a fraud. Precisely because of that, I believe he is wrong - that he saw something real (increased sodium), blew it out of proportion (elaborate solution that blames failure on the sufferer for craving salt), and used it to make money and meet chicks.
The other theory I have is a little nicer for him; he was only interested in knowing what was wrong with him, and he shared HIS cure with you, without consideration to your primary cause.
I'm sorry if you've lost a hope. I've killed my own hopes so often that I can no longer count them - hypothyroidism (and an entire book devoted to that cure, including a diet that will cause it), odd-form of diabetes (hypoglycemic-presentation that requires repeated, time-sensitive testing that I can't afford, but not likely to show need for diabetes meds), vitamin deficiency (never went away with supplements), raw eggs (my beloved raw cookie dough leads to specific vitamin deficiency that causes hypoglycemia, so I gave it up, but I'm still not well), and exercise (I gave that up when it failed to mop up the last of my symptoms).
The only thing that has worked is my meds, and every psychiatrist wants to tinker with them, since they SHOULDN'T work at the level I take. My poor but kindly general practitioner is a nervous wreck about prescribing Effexor XR 37.5 for me, but he keeps doing it because he's seen the terror and desperation in my eyes.
I've been on that level for over ten years, which is a huge no-no for psych-meds, but I've been ninety-five-percent symptom-free for over a decade, suffering a few days per year. I actually went a whole year with one crying jag and two rages.
Just, never give up hope! I find new things to alleviate the last of my symptoms, try them, and drop them about once a season, but I keep trying. I'm planning to re-add exercise in a different formation just as soon as I get an up-swing in energy.
Posted by WaterSapphire on September 19, 2008, at 7:29:46
In reply to More on Salt Cravings, and Dashed Hopes, posted by Niniva on September 18, 2008, at 16:32:15
HI Niniva,
Thank you for your response. I have so much posting I need to catch up on.
It is a very interesting piece of info you have given me here. I wondered too if the salt craving was related to my mental illness. As a little child though I had pica so bad. I still have to fight that. Maybe when I was born I was already mentally ill...I don't know. I think I have never been what most people consider normal. Thank you for the support on the opinions of the doctor, and what you think and feel about it. It made me smile :)
I am so glad you have found a way to feel somewhat better and are doing well with Effexor. They shouldn't ever tinker with it if it is still helping. Must be just what you need. I would say more, but I am tired right now. Got up this morning craving salt lol...but not all the time. I am trying to keep that salt craving from getting too bad ever so I don't go overboard.
Have an awesome day...
Peace
Chelle
Posted by WaterSapphire on September 19, 2008, at 7:31:18
In reply to Re: Research into salt cravings..Seldomseen, posted by Phillipa on September 11, 2008, at 23:57:21
Thank you so much for trying to help me. I appreciate it very much.
Peace
chelle
Posted by Phillipa on September 19, 2008, at 19:22:48
In reply to (((Philippa))), posted by WaterSapphire on September 19, 2008, at 7:31:18
Your very welcome. Love Phillipa
This is the end of the thread.
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