Had a "second opinion" today.........
 

If you want to call it that. Went to a new neuro. Was a nice man (if he were my neighbor.), but didn't do much for me in the "Dr." area.

Said, yep, you have Parathesia, couldn't suggest any more tests or reasons for it, said may "go away" by itself (I am not holding my breath), said if it doesn't, it will get worse and at that time be easier to dx. (oh goodie, I'll just wait for that happy day.) Said nothing to do now except increase Gabapentin as needed (and get fatter and fatter.) His expert advice was to mall walk and eat less chocolate.

I mentioned MS, because that still does haunt me a bit, even though I know Rose said her docs said sensations would not be all over. He said it was a very slim chance, given my MRI, but not impossible. Said I could go to MS specialist to be sure (I may just do that for peace of mind.)

So...........that was my productive day (NOT!!)

This is exactly what 3 neuros have now told me. I guess that they can't all be wrong. Still hard to accept. If I had a diagnosis, I could accept this and move on. I don't think Dr's truly understand how having a diagnosis is essential for patients to be able to accept the pain. If the pain had a name, it'd be easier. I don't understand how there are a bunch of people out here with the same symptoms and they don't know what it is....maybe we have some new disease and in 15 years from now they will finally know what it is.

Yep, I'm with you....as usual......
 

I have said that very thing.........I bet when I'm gone (much older than you.) My godchild (I have no children or siblings.) will say "oh yeah, that's what my Godmother must have had." Big help that will do me then.......lol!

Gabapentin/Neurontin will not continue to increase your weight exponentially.
It will reach a max and level off, usually from 15 to 30 lbs., dependent on the individual. I gained 25 lbs in 6 mos and stayed there for 6 years then lost it on Weight Watchers. I then switched to Lyrica , & gained 30lbs - and stayed there for 3 years until I stopped smoking 4mos ago. I then gained more weight and am dealing with that, now.
But its a trade off. Compromises must be made.
15-25 lbs for significant pain control- or be in pain and thinner.
You can lose the gained weight, but it is an effort.
BTW - Dark, bittersweet chocolate has anti-oxidants
and in moderation, is good for you.

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

My two cents worth........
 

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.

Good Points...
 

Thanks for info, I was wondering if there is a level off point. I was over weight when all of this started so even 15-30 pounds is not welcome, but your point is well taken. I have to confess, I have been over induldging a bit (drowning my sorrows.) Thanks for the pep talk, I plan on putting some duct tape over my mouth in the very near future.

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

Gottcha.......
 

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.

Agreed.........
 

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).

I just got all my paraneoplastic panel results and they were normal. I was nervous too, but now I know I don't have cancer. I hope you get yours done soon, better to know now and then you won't have to worry.

I meet my Dr. tomorrow to get his final feelings about what to call this thing I have. And to discuss where to go from here. Wish me luck.

Much luck to you.........
 

It's funny, I almost feel like what he says to you, he is saying to me too!