Annie,

the fact that your doctor asked for your old records does not mean that he will be influenced by them. patient records have data and interpretations. The data is important, the interpretations-well, sometimes you better ignore them.

I highly respect some of my colleagues. this does not mean that I take everything they say or write as the words of god.

A good physician needs to be able to pick up the important details, even if the patient is not "telling" it right. patients are many times under stress, concerned, feel lonely. they don't come for a work interview, they come for help.

I will give you a few examples-

1. a very nice young lady was referred to me by her GP- the reason of the referral was that she was not compliant with her medications. Her cardiologist wrote this in bold letters on her clinic summary.
the first question I asked her was- are you taking your medications as prescribed? and she said-yes, of course. I know it is dangerous for me not to take them. well, your doctor thinks that you don't, what is the reason for that in your opinion? I don't know, she said, I think that my blood tests look as it I don't. I then asked her, if anyone explained to her how this medication works. her answer was no, no one ever did. was she aware of the importance of her dietary habits while taking it? the answer was again-no, she wasn't. To cut a long story short-after we reviewed her diet and adjusted her medications accordingly she is one of my most compliant and well-adjusted patients. she comes from a different ethnic background and therefore it was probably assumed that she will not understand the explanations, and also no one was aware of the fact that her dietary habits may be very different.

2. one of my patients developed post-herpetic neuralgia, which is an extremely painful condition. I gave her pain meds and asked her to call me, so we can increase the dose if required. I also told her that it may take a few days, until we found the optimal dose. she didn't call me, so I assumed all was well, but when I saw her in the clinic a few days later, she came with her son and was crying bitterly. she told me the pain was unbearable and she couldn't stand it any more. the pills I gave her were useless, and she is not going to take them. My explanations that it may be because the dose is too low, made no difference. So, I started thinking of other treatment options. I told her it will take a while, as I have a few patients waiting for me, but will be back within the hour. when I came back with a new prescription I found her cheerfully talking with her son. surprised, I asked the nurse what she gave her, and she said-nothing. I went back to the patient, and asked her if she was having any pain. she said-no, not now its all gone. since when? I asked- since two days ago. then what was wrong with the pills, why did you want to stop taking them if they worked so well? I asked. because, they made me constipated. was her reply. So, this patient mixed it all together-the pain, the side effects of the medication (that helped one thing but caused a new problem), and being generally miserable because she was home alone most of the time, and was feeling so ill.

Patients don't come in nice packages that describe the contents and use directions. They are people. We (physicians) are too. and a physician-patient relationship is first and foremost a relationship between two people.

And as I said before give him (and yourself) a chance.

you may be disappointed, but you may also find out that he is the right physician to take care of you.

Alice, you are such a good doc. Do you think your MG has made you approach medicine differently?

I try to believe there is an opportunity here. I am frustrated that I cant just stop the doctoring and rest and give my burned out daughter a time out. Neither of us are doing well at appointments. I need so many tests. I have been too sick or on the one good day dont have ride. For the stomach pain and diareah I was to have a Ct scan and blood work per my pcp. The blood work only is done. And....bone scan (to see how my bones are continuing to deteriorate- I had to request as this is getting lost in the rest of my health issues I was supposed to be sent back to Endo--this is going on from hyperparathyroid issues from chronic low D)---and the test the ENT ordered a swallow test and an MRI with contrast on my neck (new neuro said he is VERY interested in the outcome of this. I had an outstanding vit D test as the first on my pcp ordered that I requested was ordered as the wrong test. It is now done as the neuro ordered it with his labs.

I dont have the strength to deal with doctors on points of confusion which helps no one and none to try to help my daughters work thru their fears and anger so they can help me more. I asked for a family meeting right after Christmas. Didnt happen. In light of the last disaster appointment at the university (not recent one) my daughter said we have to have one now. In this much pain I am not jumping on that wagon. This stuff is so hard on families. My grandkids miss me so much. I started to cry briefly when I went to this in front of the new doc. My grandkids bring this out everytime. I was very very close to them.

Annie59

Annie,

Dealing with a chronic and demanding illness (even one that is clearly diagnosed) is not easy on the patient or the family. And people respond to this in different ways. Its good if we can find the way to have special good times with our loved ones, even if there are also less good ones. it gives all some new energy to handle the hurdles down the road. I think it is important that you find the time and energy to see your grandchildren at least once in a while. I am sure it will also help you fill your batteries.

As to your question- I believe that when you yourself have to deal with those hardships it makes you understand your patients better, but it is also the other way around, I think that the fact that I was a physician and always listened and learned from my patients helped me deal much better with my own illness. Very soon after I became ill I realized that my white robe does not protect me from physical illness, nor does it protect me from the emotional responses and social and professional consequences of it.

what I found hard to deal with was that I also realized that many physicians (including those that are considered excellent and caring) do not listen to their patients and learn from them, but come to them with the self confidence of dictators knowing what is best for them, or take the opposite approach of taking very little responsibility over their care. Some of whom theoretically fully shared my approach, but in reality were very different then what they preached for.

Alice thanks for this, its made me look at my neuro in a differnent light.
He was always quick to dismiss me, when I collapsed twice, he ignored it saying it was nothing. I struggled on. When I couldn't hold my head up and was in pain and totally messed up emotionally with dealing with a horrid disease in my 30th year, he hospitalised me and said it was depression. I struggled on.
He always says I'm his difficult patient, with all these wierd added symptoms, I'm not a nice normal run of the mill patient, I make him think, my words not his.

Now he is listening, I rang up saying I was muscle fatigued and tired all the time(low iron which is being fixed) he orded ivig and said if this lot worked he will organise a 3 month trial of 6 weekly infusions........at last I think he understands that I know my body well, and much more than he does. He organised all this on his holidays to, I said "thank you so much for doing this on your time off" he acutally sounded embarrased, but I needed him to know how important it was to me.
So it has taken many years of me talking and him dismissing my problems, but I hope really hope I have taught him some things, because it has been a struggle at times. I don't think it should have taken this long, but that is life, no other neuro is close by......
sorry for the ramble, but have needed to get this off my chest for a long while...

I think you did. It sounds like you helped him mature to become a better physician. listening to you, taught him what was not written in his books. taught him the rewards of being a true physician, one who is ready to sail uncharted seas with his patients.

we all start on our first days, fresh from medical school, knowing it all.
we feel very proud of ourselves and saving a few patients lives makes us feel almost like gods.

It takes time to realize we don't. It takes time to understand the importance of learning from and with your patients. It takes time to understand how humble we should be. It takes time to understand the limitations of our knowledge. It takes time...

And not all physicians reach this level of understanding, even after many years and experience.

I am sure some of my first patients feel like you that they have taught me much of what I know. And I am sure they are right.

Most people with Chronic lyme disease are notoriously low in Vitamin D. It also covers a myriad of symptoms. Vitamin D deficiency is so widespread now because people aren't spending as much time outdoors, that is not unusual for any type of doctor to bring it up.

My neuro, who treats me for Chronic Lyme Disease, tests my Vitamin D and it was so low he put me on an isotonic Vitamin D supplement. It was only 7. There have been many articles written lately about the vast number of people with low Vitamin D and the array of symptoms that it causes. It's become a bit of a hot topic lately.

Realized I forgot to post as I said I would the info from the blood work sheet that included a number of tests and on the right a list of diagnoses.

Diagnoses: Lyme disease, deficiency, malaise and fatigue, high risk RX, disorder of Fe metabolism, dysproteinemia, hypothyroid, vitamin D deficiency

Tests: Lyme, Sed Rate plus CRP
B12, CBC, BMP, HFP, Fe, Ferritin, protein, electrophoresis, Free T4 , TSH,
25 OH...(ect) vitamin D test

Annie59

Redtail, Thank you for your moving story. It sounds very familiar in the part about being a diffcult patient that has extra things going on. How did your family respond during the days of such dissmissal by the doc and intense illness for you? I am having a real hard time with my daughter giving up and listening to docs at times. At least this new neuro truly stunned her and taught her something when he so so quickly and readily set up the IV fluids to preceed the mega dose of vitamin D. That whole thing at the university ended in the student doc that worked for my internist taking me to the lab one visit with no word why and getting blood work. When he came in he PROCLAIMED "HA!!! you have no dedydration so you cant get fluids because it cant be ordered legally!!" This was written up of course and made me look like again I dont know my body and I am nutty. I never said I was dehydrated. I said maybe to a nurse and the student in ENdocrinology as I struggled to explain the severe symptoms that come on after vit D that 'it is kinda like dehydrated". But I had to do that because THEY wer being so dissmissive saying "oh so you get dry mouth" the implication being I am whinning about things that are no big deal.

I hope one day I get to try IVIG. I deeply hope that.

Annie59

Annie, my family spent alot of time crying holding me and wondering why all this was going on, they were very supportive and loving and still are nearly nine years on, Iam very lucky.

I feel for you about people being sooooo dismissive as they don't we know our bodies. I have learnt to take on board what people are saying and then telling them what I really am trying to get across to them, I think this helped with my neruo, when he realised I wasn't dismissing him we clicked. But this of course does not always work and we do come across as whinging, where as I am just scared and sick and tired of being dismissed, one day I recon I'm gonna explode, and people will say "there we told you you were depressed and not a good patient"

I don't know the answer when people don't listen, I just keep plodding on. Ie a very young Dr kept inisting I take my mestinon, I kept saying not on an empty stomach, but she kept jumping in and insisting, I said ok bring me some dry bikkies and I'll take it. Her concern was I would go into respiratory failure, mine was I would start vomiting again.....but we got there in the end, I hope I made her think a little, she certainly made me think how to go about getting Drs to understand me