when two doctors do not agree
 

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

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

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.

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

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

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.

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.

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.

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

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

Oh, I know all about the height adjustable thing! I'm 6'2", which I understand doesn't help length dependent neuropathies. The Leki poles I use have the shaped cork grips, much nicer than any canes I've seen. I use a crutch tip indoors with them, and I get some strange looks, but it keeps me from tripping!

I've been using hiking poles for several years now. I have to use mine outside because we live on a hill and I find the pole works well on stairs. I also use it at malls, and long walks and upNorth where it is rocky and level areas are rare.

I use a Leki tip on the end. They are very durable and black.
The Leki tip has lasted me almost two years now..

I found them in 2 pks at Moosejaw shop. This is what it looks like: For those who don't have a Moosejaw nearby:
http://www.backcountrygear.com/leki-...tip-black.html

Very durable compared to the one that came with my pole.
My pole is cheap Coleman one... $15 at Dunham's. But its rubber tip wore out quickly, since I use my pole on cement mostly. I am really happy with this Leki tip.

The conversation about the walking sticks in very interesting, I was so bad, last week I really thought I should have one, now today I feel a little better so it is on the back burner again, but I will remember what you all said, good advice.
Talking about the emgs, and nerve conduction tests, that is what the new doctor wants to repeat. When I had mine done the first time they had me soak my foot and my hand in warm water for about 15mins before they did the test that I found was odd, but maybe not so after reading the other posts. I have Raynauds also, so the other side of my body was freezing and turning blue. Weird arent I, lol. Well I can see why each neruolgist wants there own tests done now after reading all of your posts, if it is that enviromentaly controlled anything can happen.
I quess I am just tired of tests, doctors, and the rest, but yes I want to be treated correctly. But I also do not want to lose trust in my first doctor, does that sound strange. I want to be able to trust her dxs since she has been so good and good to me and also is my gate keeper for all other doctors, you see I have UCTD with features of scleroderma, lupus, I have raynuds, now they think hoshimotos, microscopic colitis, photosenstive, PN and mytosis.
plus the list of ordinary old age stuff lol.
Well thanks everyone, and I will keep you posted.
susie

For that colitis... I give Kefir a try! My GI problems were terrible this summer and fall, and a friend encouraged me to use Kefir and in 3 days, I was a NEW PERSON! Lifeway kefir has 12 beneficial organisms and taking it in the yogurt base gives them the medium to grow on!

I get mine at Kroger's. It's in their health food aisle in a cooler.
http://www.lifeway.net/
It has been miraculous for me. Wish I had known earlier!
I use about 4 oz a day. Regular yogurts did not do much for me like kefir is doing! I have hubby on it now too!;)

I like my hiking pole better than a cane. I've used canes for years off and on. Canes are good for leaning on and I even have a quad one for that. But for BALANCE the pole is easier on my hand and arm. I have carpal tunnel and holding bending the wrist is a problem for me, and will set it off. The pole is light weight and sturdy enough for me. But of course it won't take alot of weight/pressure. I've had my Coleman pole for 4 yrs now. I don't even know if they still make that brand ???;) It gets alot of use and I've noticed people don't stare as much as with a cane. Hubby says I look more "fashionable" with it... LOL ;)

The Leki hiking poles are pricey, but with a coupon you can get them for around $100. They are rated to support 275 pounds, and come with a lifetime guarantee. I agree about the wrist straps, my hands claw up if held in one position too long, as with a cane,but these work perfectly. If outdoors where they can swing freely I barely have to touch the handles.

Not at all, but IMO this incident should strengthen that trust. Your doctor is, in effect, saying, "I think this is right, but I'd like confirmation or input from someone with more up-to-date information experience than my own for your good." That's a good thing. A lot of doctors would not do that. I have more respect for those that admit their mistakes/misgivings, and do the right thing about it than those that just ignore it/let it slide or keep mum to maintain some illusion.

Doc

MrsD
I will have to try that for my colitis, I had an attack that lasted overt two months, could not leave the house, it was so bad, did go the the GI doc who did give me pills asacol I take six a day plus pepto bismal which has finally started to help.But I will certainly try what your suggesting. Those attacks can be life changing.
Thanks again
susie

Doc,
I agree a doctor who refers you to another is someone whos ego is not to big to look at the whole picture with a patient. I am going to her the first one, the 15th at first I had an appointment with her assistant because she was gone on medical leave but talked to her nurse today and explained my situation and she said she will see me make a special point. So I am a little more releived just to know I can sit and talk to her about it.
but on the other hand got a letter from disability that says I have to go and have a mental exam for congnitive decline. Well yippie, lets see I thought nov would be doctor free, lol the days are filling up fast, lol.

Susie

Have you ever tried the Specific Carbohydrate Diet (SCD)? It's one of those things that has been around for decades, has an impressive success rate with all kinds of IBDs, yet is virtually unknown among mainstream gastroenterologists. Like other IBD therapies, it works extremely well for some, and not for others. I posted my experience with it here:
http://neurotalk.psychcentral.com/post808480-7.html

It can be combined with current/traditional treatments/therapies, or stand alone, and apart from its stringency, it can't hurt to try it - i.e. if it doesn't work, no harm done.

Google: specific carbohydrate diet

Doc