here we go again/ long and confusing

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Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 6/9/2010 3:53 PM (GMT -6)   
I mentioned that my new pain doc wanted me to see a neurologist just "to see if anything was missed." I had seen neuro 5 years ago, went through all the scans, tried all the "neuro" meds, gave it a good year until I was told that nothing could be done and was moved along to the pain docs.I agreed to see the new neuro my pain doc works with on the understanding it would just be a consult. My appointment was for July but last friday I got a call saying they had a cancellation so would I like to come in Monday. I told them I didn't have reports because I wasn't planning to go in until July but they said no problem, c'mon down.
I have to admit that this new neuro was very nice, sounded very knowlageable, reviewed the scans, did the whole history bit but now wants to "start over". She prescribed a new med (nolodol), a beta blocker saying she didn't want me to leave without trying something, has arranged to get all the reports on the old scans, wants all the other doctor records( her office will get them, I don't have to do a thing).She really listened, seemed to care, wants to help, said shes treated headache before but nothing like this. It could be a good thing BUT heres the question for you my dear friends...when is it ok to say no...thanks but no, I've already done this. This will mean a slew of new meds, more scans, now shes' talking spinal taps so I'm looking at more invasive procedures.
The thing is I've been through all this and I'm scared, not to take the meds etc but frankly scared to hope that maybe this time she might find something. Do you know what I mean? I'm sort of in a place of "this is where I'm at", accepted that I need to learn to live with it and frankly the thought of getting my hopes up again after 10 years really scares the hell out of me.
What do you think? do I politely say thanks but no thanks or do I just in again feet first . I really don't know.
sick and tired of being sick and tired

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3696
   Posted 6/9/2010 4:16 PM (GMT -6)   
What I would suggest is sit down with her and tell her everything you just told us! Tell her of your fears of starting over, and taking new meds and having more test especially ones that you have already had done. And above all tell her of your fears of getting your hopes up high again just to end disappointed! She really needs to know these things, and by talking to her and telling her this, maybe in the processing of doing this you will be able to better decide if you want to go ahead with her recommendations or whether you would rather not! Of course it is OK to say NO to her, YOU are the boss and it is YOUR body, and she is working for YOU. But after talking with her about these things you just might decide that it is worth taking the chance with her that she just might look at things differently and come up with that answers that your seeking. But you will never know that unless you take that chance, but she has got to know how you feel about all this, That is the important thing right now! You really need to be open and honest with her about this, because it will establish a sound basis on which to build your Doctor/ Patient relationship!

Good Luck to YOU Cat!

White Beard

Retired Mom
Veteran Member

Date Joined Feb 2010
Total Posts : 1753
   Posted 6/9/2010 4:47 PM (GMT -6)   
Hi Cat,

I have to agree with WhiteBeard. You should sit down with her and explain your concerns. Chances are she thinks she can help and wants only the best care for you. When you explain your concerns, she will consider them as part of the treatment plan. It is quite natural that you want all the pain to stop, but that you don't want to go through anything else painful, scary, confusing, stressful, or expensive in the process. I would think anyone (especially a good Dr) would understand that. You have every right to be concerned about additional procedures and to say no if you so choose, however, you did go see this Dr in an attempt to get help and you should seriously consider the options before opting out of the whole thing.

All the best to you! I'll keep you in my prayers!
Retired Mom

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 6/9/2010 5:41 PM (GMT -6)   


   Dear Cata,

     Good evening *hugg* I am glad to hear from you. Though I am so sorry you are having a hard time deciding what path to take. After reading your post the first thing that came to mind is that you should do what you feel is best. Often times out inital instinct is right on target. But, I can understand "not wanting to get hopes up". I struggle with that very aspect of my health care quite often.

     Then there is the logical side of me, that is looking at it from the outside in.... And I think you are right to "not get your hopes up"... But, I do wonder. What if you wait until the neuro gets all your previous tests. Decided which ones are out dated, and only re test those that are old, only get the extra tests that you have never recieved before? You can pace yourself as far as testing. Like say one or two tests a week so you dont get overwhelmed and can recover / get back to daily life very easily. Does that make sense? In a way so that you don't turn your life upside down by trying to get all the tests and trials done as fast as you can. So, that way you can say to yourself that ~~>

1. You gave it a good chance.
2. You have the most updated testing for someone to possibly put the peices together in the future.
3. No regrets in your heart. You did what you could.

     ..just my thought on it thou. No matter what you decided I know you will think it through and will make the decision you felt was best. We are here to fully support you in ANY decision you make.

     Hopefully you can find a few moments to yourself. Stay strong. You are in our hearts.


Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator

Regular Member

Date Joined Mar 2010
Total Posts : 39
   Posted 6/10/2010 9:33 AM (GMT -6)   
While we all know how much we hate tests and the hassles of going through this bunch of marlarce, I can see why a doctor would like to see where you're at right now.  A lot can change in 5 years within the body even though we're not fully aware of it.  On the other side of the coin, you always have the right  to say you've had enough and that you just don't want to be messed with anymore.  In return, the doctor can also feel like you're tying his/her hands  since he's being forced to work with very dated information, so nothing can really be accomplished.  Sort of like making stock investments with a newspaper dated 2005.  There are some health conditions that validate the need for current info.
Anytime we start a new relationship with a new doctor we're all exposed to starting all over again.  Unless the tests are very new and current (90 days or less), it's not unreasonable for a highly dedicated doctor to double check both your current situation and the diagnosis of other doctors leading up till now.  If we're not willing to accept the fact that most doctors will always demand very current information on anything and everything, then we might as well just stay home and just keep riding it out the way we are, but after 5 years it sounds like it might just be time to look once again and check everything under your hood before proceeding with whatever step is next as far as care, treatment and medications go.
Best of luck you'll get the results you need.  Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time. In 2004 I got an Intrathecal morphine pump &5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time. 1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.  A year ago my left leg was ampuated above the knee after ging septic.  Guess that about say's it all.  Bob.

Regular Member

Date Joined Dec 2009
Total Posts : 184
   Posted 6/10/2010 12:37 PM (GMT -6)   
oh you all are making such good sense and I know I "should"( god how I hate shoulds) give it a chance. Afterall, I never have had a spinal tap, though I hear one can live a happy life without one ;o)
You all make very very good sense...I just can't yes, its time to have a very good open talk with the doc or at least think very hard. Maybe the answer will come to me in a dream, i just can't make that choice right now..
I thank you for listening and lending an ear, just keep offering up you oh so welcome opinions....
thanks you for being here
sick and tired of being sick and tired

Veteran Member

Date Joined Sep 2009
Total Posts : 663
   Posted 6/10/2010 12:52 PM (GMT -6)   
Hey Catahoula, once again you got wonderful advise from all of the very wise people here. This place is great. I agree with everyone and don't have anything to add other than you are in my thoughts and prayers and know when the time comes you will make the right decision for you. Have trust in yourself my friend!
Gentle Hugs,
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines

Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 6/10/2010 8:13 PM (GMT -6)   
Hi Cat,

I have to agree with what everyone else has said, but ultimately, it is your body and your decision. Do whatever you feel comfortable doing. If you don't feel comfortable having these tests done, then don't. You know your body & you know in your heart what is best for you.

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