preparing for testing
 

I was diagnosed in the late 90's with idiopathic peripheral neuropathy. I am on a low dose of opioids for both back pain and pn pain but recently misplaced them for several days. I was surprised that I did not suffer any withdrawal symptoms or pains. I am seeing my neurologist after a long absence and know he will want to retest me. Should I leave off my pain medicine? Do they affect testing? Thanks for any suggestions.

Hi Zayne:
You are very fortunate that you are not having withdrawal symptoms. I don't think not being on pain meds should affect any testing, but others, more knowledgable than I, will come along and give you the correct information.

What kinds of testing will they do on you?

Melody

I expect a EMG and or nerve conduction.

I'm going to go out on a limb here and say that pain meds have no effect on emg's or nerve conduction tests. I have had both, and so has my husband.

You've had these before, right?

If you are in distress, then take your meds. Who needs to be in neuropathy pain, especially if the meds have been helping you. They have been helping you, have they not?

You've had this since the 90's??? You sound like my husband. I gather you have had the diabetic testing, and spinal taps, am I correct?

Yes I have. But the neurologist kept putting me on more and more seziure meds that wern't doing anything. And stopped doing any tests except checking liver, etc occasionally. So I saw no reason to keep going. But it has been years so I thought perhaps he would know or at least be more interested in testing as it is still progressing.

Yes I've had two of the testings done. The last time I handled it so well that they just kept on sticking me. I know that the guy had just passed his tests and because I was so willing to be polite with it all, he just seemed to drag it all out. Now before I get any more done I wondered IF my being on the pain medicine would have made a difference that last time. Maybe let me allow more of the sticking, etc. And if it altered the results.

In any case, I'm trying to be hopeful once again that there will be something that the doctor will zone in on . I do know about the spreadsheets but expect that I will need to start over since it has been so long.

Yes to the spinal tap and the diabetic testing. I also take B12 and various other vitamins and minerals. Thanks Melody.

Are you asking if the anti-seizure meds that you have been taking, and if you take them again, if they would change the test results?? Is that what you are asking?

I'm no expert, but anti-seizure meds block the pain receptors (or something to that effect).

Now the emg's and nerve conduction, well they are not reading your pain, they are testing OTHER things. They are measuring the length of the signals going from this way to the other. (look it up on google), it explains how these tests work. I really don't think it matters what pain meds you are on, the pain meds work on the brain interruping the signals that let you receive the pain message.

The emgs and the nerve conduction tests, well the person giving you the test is looking at the monitor and she's interpreting what she is seeing. I for one, believe that you could be on a load of morphine, and when they do the emg or nerve conduction, well it would still tell the story. Large fiber neuropathy (it can't interpret small fiber neuropathy, at least that's what I've read from these boards).

But if you have any burning, that's small fiber. Do you have pins and needles, burning, ???? and where do you have this?

And what was your B-12 level? Doesn't matter if the tests say it's normal. The test's results are not what we have learned here on these boards, well we've learned a lot about B-12 deficiency. For example, my B-12 reading is 2000. And it stops my burning. But I got extremely lucky in that department.

I started Methyl B-12 as soon as I found out I had neuropathy. As soon as I started burning. So maybe in my case, I started treatment immediately and it started to heal??? Who knows? I know I won't be without my B-12, that much I can tell you.

Take care,

Melody

Thank you very much Melody. I did not have long to prepare for this so did not have time to post questions earlier. The test was very early this morning. I did it without the pain pills just to be sure.

I'll continue reading for now like I have been for some time. I also gave at least 8 vials of blood after giving the internal doctor several the other day. That day my sodium, potassium, kidney function and liver function tests were all good. My urinalysis was clean, muscle enzyme test was okay, white blood cell count, red blood cell count and platelet count was good.

He is concerned about my cholesterol being high, 200, I think. I'm not as concerned myself if he expects me to take cholesterol lowering drugs. ;-). My biggest complaint to internal doctor was my legs going really numb and it did not feel like my usual pn and I stay cold a lot.

I had an MRI in April 2007 and the word severe was used quite a bit. I am to have another MRI before my return visit to the neurologist. I suspect my new numbness is from my bad back. I also have a really bad hip and two not so good shoulders, everybody has something and that's my major troubles right now. Along with my dead feet and almost completley numb hands.

I did have the nerve conduction and EMG this morning . I know I am far worse than I was on my last test as I overheard them talking but they did not repeat what they said. The neurologist said he would go over everything my next visit. I have a return visit in 2 weeks then I'll know more. I will ask for copies of my tests then.

I may post my results if I think anyone will give their opinion of what they think or know it means. I tend to get confused easily and while I may understand what a doctor is telling me in his office, I may not recall much of it correctly later.

Again thanks Melody for helping.

if you are talking about total cholesterol 200 isnt high 200-239 is borderline high and you are on the south border.

There is no real prep for conduction studies....
 

other than being clean and relatively oil free.
If your conduction tests are worse, well, you know something is causing progression. Please read this article:
http://www.aafp.org/afp/980215ap/poncelet.html
Just click on to the 'blue'. While it is an older article, it does outline the differences to a degree between small fiber and large fiber deteriorations; it also explains in part how a good neuro should be testing you for diagnosis. I have both fiber issues and they are noticable, and all I can say is, that as long as I can 'feel' ANYTHING I am not going to complain [too much].
Seizure meds really don't affect the NCV processes because they only measure the speed of the 'stimulus' to the brain and back. Meds only interrupt the pain signals in the brain- tho I am beginning to doubt their long term effectiveness.
As for actually finding out what is really going on?, when you sign those multiple piles of papers 'releasing' info to any who require them, be sure TO REQUEST A COPY OF THE SUMMARY REPORTS for yourself. You can get them in most states, tho some states [or docs] are sticky/picky about how they interpret privacy acts & can make it harder. If you can't get them from the primary source, demand them from your doctors! You may have to pay [my GP charges $10. for copies from their office], but my neuro doesn't charge so go figger.
MRI's even more of them for back issues sounds like a good idea from all you have written about your problems. While the MRI's don't show 'nerves' per se, they can zero in on back/spinal/hip areas where those nerves might be compressed or the like.
As for getting confused about what the doc says and remember later? Well, tho not legal per se, you could always take a little dictation recorder in with you so you can replay it all later. I don't now, but I did a time or two. I now simply carry a notepad w/questions on it and two pens [as one always never works]. Hope this helps. - j

When you get your results from all the testing, by all means, post them on this thread. The experts will then come and analyze all of it for you.

And bringing a recording device to tape what the doc says, well, that's the most brilliant thing I have ever heard. You can just put it in your pocket, or whatever you are carrying, press the record button, and leave it. It will tape whatever he says.

What a neat idea!!! I may do that myself in the future.

Something...
 

One has to be VERY careful about!!!!!!!!!!!!!!!
There are one-party and two-party states about 'recording' conversations. Actually in some states, one can go to jail for making a recording w/o the other persons' permission. That is why I only tentatively put it out there. Web it up. - j

j.
 

Thank you for bring that up because it is so true. Good luck Z on everything Sue...

Yeah, but in my state only one party has to know they are being recorded.

And I feel this way. I have a little gadget called My Little Reminder.
If I am holding it, and press down the record button, and I do it to hear what the diagnosis is, I feel what's the harm?

But if I'm going in with a regular tape recorder I see no harm (if that is what one wants to do), I see no harm in asking the doctor "mind if I record your instructions". Let's say he is telling you to do these particular exercises 3 times a day, and go walking, and take this pill, and use warm compresses", well I would doubt that there is a doctor alive who would say "no, don't tape me".

I mean, these are His instructions. He wants you to do what he's telling you. And if you are of a certain age where you have arthritis and you can't write stuff down, to me, it's just making the doctor's visit easier.

When I go to the eye doctor, he he always holding a recorder and he dictates absolutely everything into it that pertains to my visit. So if he can do THAT. So can I.

It's different than going into a lawyer's office and taping stuff and going into a commercial business and taping stuff.

This is just basic stuff that you would be writing down anyway.

I think it's absolutely important to get ALL information that you have to apply to yourself as far as care is concerned.

I know that most people would not take the time to do this. They would say "oh let the doctor write it down for me".

It's easier to just tape the darn stuff. Then when you go home, you can transcribe it or have someone do it for you.

This is 2008, people do things MUCH differently today. If a person is not comfortable taping and are not sure of the laws, just look it up to see if the state in which you are residing, well if they say it's not against the law, if two people have to know about the recording device, or if only one person has to know.

I mean, college kids tape their courses and bring the tapes home so they can study. It beats copying everything down in class. And you don't miss anything.

You can tape whatever you deem is important.

I remember years ago saying to myself "now why didn't I ask the doctor this question, why didn't I ask that question".

Then I began to write down all my questions.

Do you think I remembered every answer to every question?

If in doubt, ask the physician "mind if I tape this for a few minutes", I have a bad memory". I would LOVE to hear the response.

STATE-BY-STATE ALPHABETICAL LIST

Alabama - One Party
Alaska - One Party
Arkansas - One Party
California - All Party
Colorado - One Party
Connecticut - All Party
Delaware - All Party
District of Columbia - One Party
Florida - All Party
Georgia - One Party
Hawaii - One Party
Idaho - One Party
Illinois - All Party
Indiana - One Party
Iowa - One Party
Kansas - One Party
Kentucky - One Party
Louisiana - One Party
Maine - One Party
Maryland - All Party
Massachusetts - All Party
Michigan - All Party
Minnesota - One Party
Mississippi - One Party
Missouri - One Party
Montana - All Party
Nebraska - One Party
Nevada - One Party
New Hampshire - All Party
New Jersey - One Party
New Mexico - One Party
New York - One Party
North Carolina - One Party
North Dakota - One Party
Ohio - One Party
Oklahoma - One Party
Oregon - One Party
Pennsylvania - All Party
Rhode Island - One Party
South Carolina - One Party
South Dakota - One Party
Tennessee - One Party
Texas - One Party
Utah - One Party
Vermont - One Party
Virginia - One Party
Washington - All Party
West Virginia - One Party
Wisconsin - One Party
Wyoming - One Party

I thought of the tape recorder years ago. After having more doctor say NO than they did yes, I finally gave up on that ideal. I know the other is having a spouse in the room but that also presents more questions and often ones that I am not interested in. My hands are just about completly dead so my note taking suffers.
I did appreciate that the doctor let me cover up with a blanket as I stay cold all the time unless really being active. They also heated up a small beanbag type thing for my very cold hands and let me warm up hands before testing.


I did so want to change doctors this time but it might be for the best I went to same one as he can tell the big difference. This time since it is much worse he seems interested in more testing. I sure hope so as dead feet and I can still walk but dead hands has already stopped buttoning things, painting and a lot more. Very frustrating to say the least.

I am about to vitamin myself to death as well so the next thing I will need to ask is what to take when.

Thanks everyone and thanks Hey Joe for the list..

Tape Recording
 

On taping - I live in two party state - both have to agree to the recorder and since I have to go to appts alone - its tough.... so if you do have someone to bring with you - do it!!!!

One way people get around the two party recording - at least by phone - is even though you can tell a company you do NOT want to be recorded - they willl have another person listen in on the phone conversation (trust me on this) and be writing it down - they do not reveal this to you and I think its incrediby unethical....

I'm sure many docs dont want to be recorded for the obvious reason - future liabilties - so if you do have to go alone and they wont let you record - write what you can in front of them - even if it takes forever.... and get copy of records asap... so you can remember whats being said!:confused:

now
 

why would a doctor fear being taped? Don't doctors tell you the truth?
Or-- are they afraid you will find out they don't know what they are talking about? eh?

Just when I had my son, the high risk OB specialist I went to had a woman with mild kidney disease who was pregnant and my doctor (who is just wonderful) gave her all the low down...risks to kidney functions in the future and all.

She decided to continue with the pregnancy (he advised against) and when she delivered she went into kidney failure. She sued him. And that was awful for him because he was really a good guy and good doctor (handled my crisis extremely well and I am here typing because of him )... so after that they recorded all consults with high risk patients. He was considering recording ALL patients and this was 26 yrs ago! A few years later, he left that practice and opened his own fertility clinic. And he remains very respected here to this day. (He himself was a Hodgkin's disease survivor). So this is an example of the patient turning on the doctor and claiming what was said, and not said... etc.

I think doctors who won't let you tape them, have something to hide.
With no tape...it becomes he said/ she said....and you know doctor's typically win in those situations because they have power.

I agree with you MrsD but trust me in my smallish town more doctors said no than yes. So I have to just do the best I can as we have limited number of doctors and right now I do not drive so larger towns would be out of the question for me. I really don't like having my husband in the room every time either. He is depressed enough as it is with both his and my health troubles and I would tend to not ask some things with him there.