Very Unproductive Doctor's Visit

My 2nd appointment with the new doctor was at 10 this morning, and I am still upset and angry this late.

For starters, after waiting 4 weeks for this follow up appointment, nothing was done on their end.  In the first visit, she had seen most of my scans, but not all of them.  So I had to sign a release form, and the scan center was suppose to send her the needed scans.  Appearently, the scan center never sent them, even though the doctor's office had faxed the request.

So, because she didn't get the scans, she didn't bother to set up the nerve related tests.  She said that it's her office's policy to request one time, and if they don't come, its up to the patient  to go get the scans.  I was furious, and said, if that is the case, why didn't your office call me and ask me to get them.  I would have done it immediately, and delivered them to her.  No reply from the doctor.

Next, she asked me about the Cymbalta test.  Told her all the side effects, etc.  Said she wasn't surprised, that many people make the same complaint.  She mentioned several other nerve type meds, but I had tried all of them in the past without any good results.  She mentioned another one, starts with a "T", wish I could remember the name, but then she quickly said it would have the same side effects as the Cymbalta, so there was no point writing a script.  I told her I would be willing to try it, and see, but she said no point.

She gave me another intense probe with her fingers into different joints, etc.  Still sore from her bony fingers, lol.  She knew right where things normally hurt.

Then she really insulted me.  Out of the clear blue, she says, and you know I will not write you any pain prescriptions.  I was floored.  I told her, that even on the previous visit, I was not asking for any pain meds, I was seeking a better diagnosis of my pain, and hopefully, perhaps a better treatment plan based on a new diagnosis if one was found.  Plus, on the first visit, it was the doctor that suggested that my oncologist continue to prescribe my pain meds, as he had better latitude to do so with me being a cancer patient.

I reminded her of this, and the fact that I never once asked for, hinted at, or implied, that I was looking for either additional or different pain meds.  I don't know why she said that, but it really angered and insulted me.

In the end, I am suppose to make the 45-50 mile round trip to the scan center, and get copies of what she wants to look at, and drop them off at her office.  They won't do it by phone, as I have to go there and sign papers and even show my driver's license.  Had to do this before for another doctor.

Assuming I get the scans, she made an appointment on September 5th (pending the scans), to have me to the

EMG and the NCS tests.  I can't remember which was which, I want to research them myself, but she said one would be really uncomfortable, and the other (think it involves needles) can be painful.

On my way out, they hit me up for some money, which I didn't expect.  I realize that Medicare doesn't pay 100%, but in my 2 plus years of using it, not a single other doctor, specialist, or scan center has ever asked for any money or billed me for any differences, I can only assume they absorb the cost.  It was only 50 bucks, but I wasn't prepared to do that, wish I had known in advance.

The entire visit this time lasted 15 minutes tops, and while she was fairly friendly on the first visit, she seemed a bit on the cold side, and anxious for me to get through.  I don't know, perhaps she was overbooked or was having a bad day.

Since I see my oncologist next week, before these scheduled tests, I am going to bring him up to date, and ask him outright about the tests, and see if he thinks they will possibly prove anything, or is it just going to be a big waste of time or money.  Upon his advice, I may or may not cancel the tests.

If any of you have had these tests, please tell me what to expect first hand.

I am the last person on earth to be looked at as a drug seeker or potential drug seeker, and from my posts, you all know that I am totally honest and compliant with the pain meds that I am on, and I didn't appreciate her remark, it was totally uncalled for.  It's like some of these doctors are obsessed about not wanting to prescribe pain meds.  More like you are assumed guilty until you are proved innocent.  Kind of backward thinking to me.

That's the latest, and a mini-vent at that.  Very disappointed that I wasted 4 weeks waiting, only to find out she didn't nothing on her end.

David

Post Edited (Purgatory) : 8/15/2013 9:46:20 PM (GMT-6)

David,

I have had both an EMG and a Nerve Conduction study. While they aren't fun (yes, there can be some pain involved but I guess I don't see it as any worse than the ongoing pain that we already deal with... and at least this pain is temporary!), they are important diagnostic tools. I would encourage you to follow through w/ these tests. Here's a link about both tests. There are also YouTube videos that show a patient actually going through the tests (just go to YouTube and look up EMG/Nerve Conduction Study).

www.centerforneuroandspine.com/services/nerve-conduction-and-emg-studies/default.aspx

Next, I've never heard of a doctor before being so negative about medications/side effects/meds not working? When you say that "she quickly said it would have the same side effects as Cymbalta"... that's just really, really strange to me (and I think you said she made a comment even when you started the Cymbalta that she doubted it would work for you). ?? In my numerous health/pain issues and the 50+ doctors I've seen over the years - I've never had one that has said anything like this.

All medications affect people differently. To be doubtful that a medication might work is strange to me! Or to say "Oh, there's another one - but it will give you the same side effects"..... again, very strange!

Point being - I would WANT to give the alternate nerve medication a try. I'm assuming - if it starts w/ a T - that it's Topamax. Having been on this medication in the past -- yes, it can have side effects. But it does work for many people. I used it for migraines and it did help. The fact is - you won't know until you a try a medication IF it will work, IF you will have side effects and so forth.

Like I said - I've never heard of a doctor saying "There's no point" ?!

I've taken both Topamax and Cymbalta -- and while there may be similarities -- I found them to be two completely different meds w/ completely different side effects.

Re: the comments about pain medication..... I know it's hard not to take it personally, but re: doctors & narcotics - it's whatever their slant is re: opiods.... it's not a "personal" thing -- whether you are honest/dishonest, a legit CP patient/drug seeker, etc.

With all the issues surrounding narcotics, I wouldn't want to script pain meds either, unless I was a Pain Management doctor. So, I really can't blame her (or other doctors) with - as you put it - being obsessed w/ not wanting to script pain medications.

The good thing - from your perspective - as others here aren't as lucky - is that you do have a doctor that is willing to cover your pain medications.

At this point - I would do whatever you need to in order to get those scans and have the EMG/NCS done. Again, it's an important diagnostic tool. They may show what's going on to make your pain so high..... OR they can rule out several things.

I'm sorry that you are feeling upset and angry..... but I would try to look at the positives in that you ultimately are getting some testing done and that you do have someone that will script your pain medications.

Oh, just a good rule of thumb when going to a consult doctor (and this is for all of us) -- call a week or so before the appointment to make sure they have received all the necessary stuff.... just to avoid what happened w/ you today.

Hope your soreness from your exam passes quickly and that the next few weeks pass quickly - so you can get those tests done.

--Tina

thanks, tina, is after 130 AM, and a bit more calmed down.

yes, it was the doctor on the first visit that said she didn't think the Cymbalta would help, I thought that was odd too. I never had a doctor tell me that in advance either. the other med was what you said, Topamax, and even though she said it would have similar side effects, especially nausea, I still told her I was willing to try it. Like you said, different meds work different ways with people.

pretty sure my oncologist will want me to have the nerve tests, not like I am afraid to have them done, when I think of all that has been done to me the past 5 years. I will look up the information you talked about and read up on them

as far as her remark about not writing pain scripts for me, she already knew in advance that I wasn't seeking any, and it was her, not me, that told me on the first visit that I would be better served by my own doctor for pain scripts. so what was the point of her saying that? makes no sense.

thanks for you advice

david

Sorry David as I know you had placed high hopes in these Drs finding some answers for you and they still may.

As for the tests, definitely! EMG is more uncomfortable then painful, your getting shocked literally in the muscles and no it apparently can't be faked. It lets them know several things, are the correct nerve impulses getting to those muscles and shows any muscle weaknesses. Some have very old weird looking machine that looks like something out of "one flew over the cuckoo's nest " they actually haven't changed since the origions of the test except the needless are smaller! So don't be alarmed if its seen better days!

If I'm to understand Medicare, if a Dr accepts a medicare assignment patient, he agrees to accept what they pay. When extra costs occur that your responsible for the 20% and they're supposed to tell you prior to doing it. For example, medicare will not cover 02 sat on a routine Drs visit unless you have a pulmonary diagnosis, some Drs use it as part of routine vitals.

Call them and ask what they charged you for then call Medicare and ask them if that's chargeable to you. Sadly many Drs abuse the Medicaid /Medicare system by doing just that, billing them, charging you.

As for the comments? Just roll with those David, so many Drs feel opiate fear its pathetic. One of the top 10 Neurosurgeons worked at the hospital I spent my career at in Ortho /Neuro. A brain surgeon! The best of the best. David that was the rudest, most obnoxious, quirky little man I've had the misfortune to encounter! We would pay each other to call him when we needed orders, worth every penny not to have to talk to him!

I will say this, if something happened and one of my kids ever had head trauma or a tumor you better believe it's him I will call! When it came to his work, hands down he deserves top 10, even if he had zero personality.

thank's 1day and diane.

jpjr - that's scary, and to me scarier, as I had a severe case of pancreatitis in 1981 at the age of 28. and like you, I was a non-drinker. pancreatitis is often associated with heavy drinking, even in younger people. knowing what you said, I wouldn't even want to take the chance.

lexie - this group is a legitimate arm of the Greenville Hospital Systems, one of the largest in the entire state, so I don't think its a scam. I could see them asking me for the diff after the 1st visit, as that was 4 weeks ago, but does seem odd to pay for yesterday's visit at the end. I am spoiled I guess, not use to paying money upfront, and as I said, so far, under Medicare, no one has charged or billed me for any differences.

Vickie - I do realize that the skill of a doctor trumps his/her bedside manner and attitude. And this place is so packed with patients, it looked like a busy airport terminal inside, I doubt the dr. remembered much about me, based on one previous visit. Still, I just don't like the attitude part, again, I am spoiled with doctors that know me well, and spend a lot of time when I am on a visit. This morning, I don't feel so hurt by her remark, I tend to get over things pretty fast.

My intent is to pick up the scans early next week and drop them off to her office in person, and I will get someone at her office to sign for them, and hopefully that will end that nonsense. I want the tests done, as part of this process of elimination to hopefully get to the bottom of things.

She did say for the 2nd time, that she also believes the pain is the result of severe radiation damage, and if that is the case, that it will not get better over time. I told her I could accept that, if it were not for the fact that the pain is spreading in my body. Now on my left side, I am having more and more episodes, where in the past, left side pain was rare.

Thanks for all the support/advice

david

thank you, m&g

I was reminded again, after reading updates, what a great place this forum is to so many folks.

Sorry to hear about another bad visit with a Dr. You seem to have the worst luck with things going wrong:(

I agree with others in that I don't understand what the $50 was for as you didn't pay this on the first visit? And they didn't do any testing and it was actually LESS time than the first visit which usually can be more expensive if there is a co-pay...

So I would be calling them up and asking exactly why you had to pay this! It makes zero sense that you had to pay now but not previously.

I also have never heard of a Dr. being so negative about medications before you actually try them because the different nerve pain meds all have a different active ingredient. And the side effects you mentioned with the Cymbalta are very common and usually go away within 4-6 weeks.

And definitely agree with Tina....just because jpjr50 had a bad experience with Topamax...does NOT mean that you will at all. Basing a decision on a med because of someone on the internet is not the way to go. As mentioned, every single med can have possible side effects....just like the pain meds you take...So it's all about whether something works or not.

I'm also very surprised why they need your previous scans before doing nerve testing? They are tests all unto themselves and other tests are only needed to help in conjunction with the nerve tests determine what your possible diagnosis is afterwards......but I have never had a Dr. ask to see other tests before hand.....The only time they would do this is if you had previous EMGs or a NCS done in the last few years which you have not.

And why can't your Oncologist's office send out all this info to the Neurologist? They should have copies of everything already. I don't understand why you have to drive around and pick all these up and deliver them? I would be making some more calls before you do all of this.

So, there are definitely a lot of questions that you should be asking....

As far as reiterating the part about not prescribing pain meds....as others have said..that is pretty standard if she just glanced at your chart seeing you are on Fentanyl and Lortab....

And yes, the tests are a bit uncomfortable but nothing that most of us with CP can't handle. But they are very important as the key is finding out that IF you are having actual nerve issues like CRPS or even Fibromyalgia, to get you on the right treatment plan as opiates only do so much for that type of pain as you are finding with the large increases the last months doing virtually nothing for you. I was thinking that was the entire reason for sending you to a Neurologist because your Onco doesn't have expertise in this particular area.

It really is about doing more test and ruling things in/out...I did see that you are posting on the CFS board as well and didn't realize that you were actually diagnosed with CFIDS....This does go hand in hand with Fibromyalgia for many of us so it could be Fibro that is causing a lot of your issues. This is why I truly hope that you continue with this Neurologist or find another one to get the tests and treatments/meds that may end up helping you!

In this day and age, you shouldn't be living such a miserable life with such pain and lack of mobility where you are barely able to get out of the house to enjoy any activities. We all hope you keep pressing forward!!

Post Edited (Snowbunny21) : 8/16/2013 10:11:59 AM (GMT-6)

Hi David,

I've had several EMG's and I say the same thing that almost everyone else did... it's uncomfortable but not painful. And I don't like needles so when I saw them pull it out, I was tense and prepared for the worse. It wasn't bad at all. The most uncomfortable part for me was that my nerves seemed to spasm the rest of the night after the test. That was a bit irritating.

Good luck to you!

Thanks to everyone else's responses. Good info out there. I am definitely not worried about needles, I grew up in the 50/60's in a military family, and every time we moved overseas, would have endless shots with those old fashioned giant needles, and with all I have gone through with my prostate cancer complications, that would be the least of my worries. I don't even mind IV's being put in, as long as they don't start twisting the needle around too much.

The only exception was my one any only experience with a spinal tap. The doctor messed it up upon insertion, and to this day, have never felt so much pain. I would never consent to another one again.

David

I remember mandatory vaccinations in First Grade, that swirl of betadine, and out came that giant syringe that we all SHARED! We'd just line up, and down the line we'd go,...bam, bam, bam...

No wonder the 60's were trippy for us growing up.


Sookie

Dear David: I'm new here but do know a bit about Medicare. It pays for 80% of what's covered. You have to have a supplemental policy to cover the rest of the charge or you will be billed that amount. That might account for the $50. If you had no supplemental they would charge you outright right there. Usually things do go through Medicare before you pay anything, like someone else mentioned. The best thing is to have supplemental insurance in place beforehand like I do. I have AARP Health Care Options Plan F. It covers everything the usual Medicare doesn't cover. It even pays for charges over usual amounts charged by most doctors if your particular doctor charges more. I'd check into supplemental if you haven't already. It's expensive but pays in the long run. Mine pays for bunches of stuff and I pay no copayments or charges whatever past the premium. Hopes this helps. Do you have supplemental insurance? Stronglady.

David, I am much the same way. I am not pleased with the long list of medications I am on, and less pleased with the long list of medications that I have allergic reactions to or sensitivities to. When you have a long history of "reactions," it does make one cautious to try new things, in particular when one has experienced things that work and offer relief. That includes experiencing patient physicians who are not rushing you through a mill as a number, not a name or person, just a thing to be processed for codes on a billing form.

When we've had good experiences, the shock of the mill truly is culture shock. I've also been fortunate to have some wonderful experiences, some wonderful professionals. Sadly, I've also seen the mills, primarily when I would go with my MIL to her appointments. I think, my opinion, is that Medicare patients are not treated with the same respect and dignity, and it's also my opinion that it's about judgment, personal assessment of character and ability to pay,...

And yes I did compare how "I" was treated to how "she" was treated. I did compare the facilities and practitioners "I" could go to with the ones "she" could go to. The differences were astonishing. I also feel that's part of why she likes me going with her, because I'm more apt to "coax" longer visits, more information, and make more inquiries....I have the "luxury" of being an advocate so I can almost "get away with" being a mouthpiece.

There is, in my opinion, a disparaging difference in quality of treatment and what the doctors are willing to do and offer.


Sookie