[bobthebuilder54]

Hi everyone,
Just got back from a teaching hospital from a referal from my nuerolgist to another, to see if she was treating me agressivly enough. Well the new neurolgist does not seem to agree with my other neurolgists dx and wants to run some tests over again. Now I really do trust my old neurolgist very much and it was her that wanted me to go, but I am so frustrated, has anyone ever had this happen to them? If so what did you do. I am half tempted to cancel the tests comming up from the new neurolgists, it is five hours away and this will be the third time I have had to travel there to the doctors. Any help would be greatly appreciated.
susie

[Dr. Smith]

This is why they call medicine a practice, and a dx an opinion. There's a lot of science and fact, but the big picture is often an educated guess based on best available information, experience, and sometimes even a hunch or two.

Yes, I have had this happen to me - several times. There's even an old joke about it (sort of).*

Since the doctor that you have trust & confidence in had some concern about you/your treatment and sent you to the teaching hospital, what does she think about your going through with the additional tests?

From my own experiences, I'd try to have a discussion with both doctors (separately) and try to find out what's up. What are they trying to determine or rule out, what are their concerns & why, etc. I wouldn't be confrontational, or try to pit them against each other (that may shut them down or cause them to put up a defensive wall), but I would be firm about wanting to be informed and involved in my care/treatment. Then I'd probably list/consider the pros & cons (upsides/downsides, benefits/risks).

Since it's a bit of a distance (or maybe just becuz) I might go over that last part a couple times (i.e. sleep on it) to see if my answer changes or I needed more information.

HTH,

Doc

* http://neurotalk.psychcentral.com/post705387-32.html

[Susanne C.]

I had the same situation, my neurologist was pretty certain I had an inherited neuropathy, and no possible treatment, but she wanted to be sure. It really seemed to bother her because I was only 47, with 5 kids, and this progressive, incurable condition, and all they could do was prescribe pain meds. She sent me to Johns Hopkins, less than a two hour trip for me. The findings were not substantially different, but they did the skin punch biopsy and some of the Athena tests for CMT, as well as a two hour EMG / NCS. Diagnosis - severe small and large fiber polyneuropathy, probable CMT. I also have pinched nerves at wrists and elbows, but test for HNPP was negative.
So my two doctors didn't disagree, and they both supported my decision not to pursue further Athena testing since there is no treatment, but they more or less washed their hands of me and referred me to my family doctor for pain management. Actually the doctor at Johns Hopkins was happy to pursue it if I wanted to, but did say it was unlikely to be productive.
Dr. Smith's advice is sound. Additional tests for untreatable neuropathies seem pointless, but if there is some condition that is treatable for which you haven't been tested, by all means pursue it.

[bobthebuilder54]

Hi Doc,
yes, I agree they practice medicine that is always what my husband sayst o me too. But it is so frustrating when you are the one they are practicing on right?

Well I have decided to go and talk to my first doctor, I really respect her and she is a good neurolgist and she will be honest with me if she feels I should pursue this repeated testing. So in a week or two I will at least be able to talk to her, mean while the testing is set up for the end of Nov. I quess I have been in the dx merry go round for too long, just fed up. But loved your joke, lol made me laugh. lol.

Thanks again for replying,

susie

[bobthebuilder54]

HI Susann,
Thank you for replying to my post. I really do appreciate you sharing your story with me. I hope you are doing ok. and I am sorry that their dx was right.
I am going to go and talk to the first doctor who I really do respect and I know that she cares about me and getting the proper help. So I know if I discuss this with her she will know what to do, or what I should do. I just did not know I was so mixed up on the whole thing.
Again I thank you so much,
susie

[mrsD]

Doctors know that tests are not the final answer.

Some are lab errors, and some reflect momentary changes in the patient, that may be fugitive, etc.

Patients tend to think tests are the end all of diagnosis. But in reality they may not be accurate at all.

So testing again may reflect this. Or it may reflect the liability attitude of the doctor, to cover all bases etc.

I really think it is pretty rare, to have doctors agree on anything.

In our case here just with our very sick cat, I am now on my FOURTH VET! What a hairy trip this has BEEN!

Without knowing exactly what tests are being ordered, it is difficult to respond to this question.

[echoes long ago]

if its an emg/ncs , every neurologist wants to conduct their own . it is something that has to be interpreted by the doctor and has variables, such as areas tested, temperature of the room etc. and they dont like to rely on the results that another neurologist might have determined.

i can also attest to lab errors and test results changing in short periods of time.

[Susanne C.]

I am doing all right, some weeks I use more pain meds, some less. I use a hiking pole a lot, the wrist strap is easier to use than a handle on a cane. It slowly gets worse, but I am thankful that I wasn't more affected when my children were younger. It is what it is, and a lot of people have it harder than I do. Proper pain medication is a must, I can get a lot more done with it than without it. I am very fortunate to have a cooperative family doctor. I think that it is a scary condition to start with, but you get used to it and adapt. You have to.

The temperature thing with the EMGs is interesting. I am always cold and it took them almost an hour with a heat lamp at Johns Hopkins before they would start the test. I felt like a French fry.
The neurologist at Hopkins was the first doctor in my entire life who was able to get a reflex response. Not sure if that was to his credit or not!

About the accuracy of tests, the neurologist at Hopkins was almost certain about the HNPP, because of the pinched nerves. The Athena test was negative, but it only has an 85% accuracy rate. 15% is a pretty high margin of error! I assume other tests can vary too.

[Dr. Smith]

Originally Posted by bobthebuilder54

But it is so frustrating when you are the one they are practicing on right?

Sure is. Many years ago, I jokingly dubbed it "guinea pig complex" - being bounced from specialist to specialist, therapy to therapy, medication to medication.... I figured I wasn't the first, so I googled it, and sure enough, others had coined similar terms. It's harder to find them now; when you google "guinea pig complex", you get a lot of hits of people building elaborate habitats for their pet cavies....

Somewhere in that process, a couple of doctors confided/confessed that with research having become so much easier via the web, many patients now know more about their conditions than the doctors do. We may have one to a handful of medical issues, and time to put into learning about them, while the doctors have dozens to hundreds of conditions to learn about, hundreds of patients to treat, and very little time to devote to individual patients.

The upside to this is that by being pro-active, we can actually get better care than before, because we can better help our doctors help us (help ourselves).

Doc

[Dr. Smith]

Originally Posted by Susanne C.

I use a hiking pole a lot, the wrist strap is easier to use than a handle on a cane.

I use a wrist strap on my cane. I finally went with a Fritz handle (the best for arthritic hands) after trying several styles. With all the new ones they have now, including custom-molded to your hand, it's a lot... different than it used to be.

Some hiking stick makers are incorporating similarly formed (and height-adjustable) handles into their sticks. Whatever works.

Doc