Hi rose_thorn98,

Is it that, or is it that old stigma of not being believed by family, friends, and other doctors? (That's a rhetorical question; I'm guessing the answer is: Both.)

If putting a name on it would really help, there are specialists - diagnosticians - who may be able to put a fancy (albeit perhaps meaningless) name on it. I think what we all really want is hope (if not a cure).

I understand where you're coming from, but I respectfully disagree. I have a few "diagnoses" with fancy names. Unfortunately, treatment is still of the symptoms, because there is no specific treatment for the condition/disease other than to treat the symptoms (as with idiopathic PN), and that doesn't make me one iota more able to "accept" the pain.

Despite the wisdom of the "sages", I think I will likely never "accept" the pain (definitions subject to interpretation). Instead, I've had to learn to get past that. Some things that have helped me are the coping techniques discussed in other threads here, educating myself and becoming my own patient advocate, learning about (and recognizing) the steps of grief & loss (for which there is also often no answer/explanation/reason), learning about medicine & how the system (how doctors are educated and think) works, becoming actively involved in FtF (Face to Face) support groups, and learning more about myself and being human in general (which I've had a head start on from previous experiences).

Doctors may understand more than we sometimes give them credit for.
http://www.medpagetoday.com/Blogs/21266?

I also dug deeper into what what medical "diagnosis" really is/means. You may be way ahead of me on this one, but I found the sections on Overdiagnosis and Errors in diagnosis interesting.
http://en.wikipedia.org/wiki/Medical_diagnosis
(I don't use Wiki as an authoritative source, but it is often useful for overviews and jumping off/starting points.)

Doc

Fortunately for me, my family and doctors do truly beleive I'm having this pain. And I have become very educated about all things neurological and being my own advocate. That has helped me to get a very extensive work up to rule out everything from HIV to parneoplastic syndromes, thanks to my assertiveness with Doctors. I feel that I am doing the best I can and that I have had every possible test to rule out something that could be causing my symptoms, at this point. I'm so thankful that I'm educated enough to be able to talk intelligently to my Dr. about my care, and that I'm not some little old lady who doesn't know what to ask.

But, as someone who suffered a painful bladder condition for 15 years before getting diagnosed, I can honestly say that getting a diagnosis can help one emotionally cope with their condition. It helps with the grieving process. With a diagnosis there is a sense of finality, and allows one to then move on to the other stages of grief.

But you are right, hope, education, and finding the right management of the pain is key. And even if I don't get a firm diagnosis, I am working with my doctors to find the right symptom relief. But it may not necessarily be true that the treatment would only be symptomatic relief with or without a diagnosis. If an underlying condition were to be found, then sometimes treatment of that can also slow down progression or even reverse damage.

Its all about finding a balance, between looking for a cause (without over testing) and treating the pain.

You make some good points. Sometimes what's in a writer's mind is different than what's in a reader's.

It wasn't my intention to suggest that anyone not persue diagnosis. As I've said in other posts, I'm an advocate of multiple opinions, and have gotten them myself on many occasions when I wasn't satisfied.

I understand the desperation because I've been there too. There comes a point/time, and it's a grey area different for each individual, when the stress of the obsession for answers may become more detrimental (or contributive) than the condition/question. It's not cut-and-dried either; things are in constant flux and worthy of re-evaluation. Nothing can be done about the conditions I mentioned today, but that doesn't mean I'm resigned to roll over and go away. I keep reading, stay in touch with the doctors - we never know what tomorrow will bring, especially in the technological times we're living in now.

Yes, it's a balance; I should have emphasized that more than just making the observation.

Doc

You both bring very impressive points to the table.

A name may help me with acceptance, but mainly I want to exhaust all possibilities before I accept the term idiopathic, as Rose said, if there is indeed a cause, I would like to be able to control that cause and hopefully keep progression to a minimum. I need to reach some point of satisfaction that all avenues have been checked and nothing was missed.

If every possible cause is exhausted, to my satisfaction, I will have no other choice than to accept the term idiopathic.

With that said, I do however appreciate that over obsessing on testing and doctoring can become detrimental at some point, and I believe I am approaching that point, not there yet, but approaching it. I feel myself getting mentally, physically and emotionally exhausted from a year and a half of this. My plan is to give the MS specialist a shot and then pull back a little, unless symptoms get worse.

I am realizing that other parts of my life are starting to suffer from all the energy and time I have spent on this.

I know what you mean. The searching for an answer is exhausting and I've only been at it for 4 months. I find myself coming closer to just accepting too. I know that if and when I do, I'll probably feel alot better emotionally. But just not there yet, as its been such a short time. Everyone at their own pace.

Ok, this is where I sometimes get myself into trouble (and thanks for a great example - no offense intended). I tend to take people at face value unless something jumps out at me, so when I see absolutes like "exhaust all possibilities" and "every possible cause" it's difficult for me to interpret how literally that should be taken. I can't tell if the writer is implying some reasonability (has some number in mind), or if they really expect/want to keep going until - literally - they've exhausted every and all possibilities, so I make some comment or observation (like my first post in this thread). My intent was just to interject some balance - food for thought, and no more.

Doc

I thought of this as I was typing the sentances you quoted.

"At what point does it become an obsession?".........Your "food for thought" point is gratefully taken.

I think for each person its different. Some people don't need answers, they just want a pill to make them feel better, don't care what is causing it. Others need to know. Some Doctors are good at researching causes and others are not at all. I know for me, the first neuro I saw was uselsess, didn't think I needed ANY testing done at all. Then I got a second opinion and he did alot of testing and together we decided we would test for as many known causes of PN as we could before saying its idiopathic. So, the term "all possibilities" is different for each patient and each Dr.

Everyone is different in this area. I am of the mind set of you and your second neuro., exhaust all tests that are know causes of PN before "putting to bed as idiopathic." With that said, I think it will be "bedtime" soon for this dx. of mine.

Just as soon as I follow through with the blood work for paraneoplastic panel. Script has been sitting on my desk for a few weeks (been putting it off).
(Scared).