Aww Mrs. D, thank you for the words of wisdom and comfort. That's what I love about this place, good info, great wisdom and plenty of humor.
I was thinking as the nurse was talking, "Unequvivical, the one word I don't know the meaning of, great!" so I asked as she said well it means something is definately there but the radiologist recommends more testing be done. At some point I quit absorbing anything she was saying, maybe because I didn't like what I was hearing, that little devil on my shoulder was reading her the riot act. I thanked her, assured her my cell phone was the best way to reach me and then I hung up. I am over being mad at her, I will tell the doc how it made me feel and let him deal with it. The best about this guy is he always calls my hubbie with his blood results first thing in the morning, so I know I won't be hanging all day wondering.
I know I probably will have a spinal tap, not looking forward to it, but my grandson has had plenty with his cancer so I'll be brave like him, okay the kids are always, always sedated.......I'll be fine with it. Just like I was when they pulled the mask over my face for the MRI, I was told to close my eyes that the new machine is that sensitive, the rebel in me rolled my eyeballs inside my closed eyes. I don't recommend this, they had a "do over" so I eyeballs went quiet too, aside from the noise it was okay.
The one thing about chronic anything is losing my ability to do normal things, I have been struggling with this one for four years now, thank you PN. On the other hand I feel its best to know your enemy and I would be glad to have something better than idiopathic.
I wilt in the heat, I have noticed my cognitive abilities dropping, but I always blamed it on the neurontin. I have trouble remembering things, can't bring a word to mind to finish a sentence, I am noticing these things. My work area isn't tidy, I have trouble remembering anything unless I write it down, and I am aware of all these things, so I write it all down, millions of notes stacked up by my computer/phone....
It will be something I can deal with, it isn't cancer, I am alive and working and enjoying my grandchildren, and life is still good.
Thank all of you for being here for the last four years of my PN and I know you'll be here for the next four.....

To my knowledge, PN has nothing to do
with memory loss or cognitive abilities.
That is definitely a s/e of the meds.

Nide, I was thinking of M.S. when I mentioned cognitive abilities, I am not leaning toward thinking I have M.S. though.
The rheumatologist called me Monday morning and he was very vague, he said "a lesion measuring 6x14 mil. mumble mumble, not really large, atypical of M.S., hmm but still doesn't rule that out, mumble, mumble. evidence of demylation, radiologist recommends further testing given symptoms. Well Janna I don't know much about the brain so I am sure Dr. Lindsay will go over this with you and even show you the pictures. I don't feel qualified to answer any questions, he is the neurologist. so keep those for him. And quit smoking, you know I am going to nag you every time I see you, let me know if you need additional help with that."
Dost thou leave me so dissatified, so I get to wait nine more days to get the real picture from neuro. In the meanwhile I am starting a journal of symptoms and pain so I know what to ask, I hate to focus on this but I think a journal will help me remember things like the ends of my fingers going numb and then "zinging" every time I touched something. All I want is a definitive answer, I hate being idiopathic, it is like not knowing your enemy!
I'll keep you posted and by all means let me know if you think of questions I should ask and I am always open to suggestions.
Janna

Idiopathic is frustrating. Knowing the cause is a kind of 'closure'.
Since there are over 200 known causes for PN, finding the right one
can be a 'needle in haystack' search. Endless testing to see that you are negative, since it is a process of elimination.
No one test finds a smoking gun.
But ideopathic or not, the treatments and meds are 95-99% the same !
Since there are about 75 meds currently Rx'd for PN - take your pick.
We are all different. We respond differently.
Same with response to the Rebuilder, TENS, Rejuvenator, etc.
But you must have a specialist neuro who has many satisfied PN patients.
Most neuros don't 'cut the mustard'.(no matter what they say- ask for patient referrals and ask the receptionist & nurse to tell you, about how many PN patients the doc sees - not 'a lot' but an actual estimate of numbers)
Good luck on your search.

I do believe I posted earlier in this thread and will reiterate that...IF you feel outta a tree as a kid, or got a concussion in a car accident or whatever even YEARS ago...those things do show as 'lesions'. That is why it is important to get and find keep hoard whatever copies of your prior films and reports on that brain of yours.
A few years ago I'd had a MRI and the 'readers' asked me about 'accidents' .. It'd been soo long ago [15+/-] years I really had to think about it? You tend not to think that things that long ago can affect you now? Once I recalled a solid concussion and how I'd fallen etc...the docs just went...OK That's that ... but we will 'watch' it. Essentially it means, that if IF you fell off the rocking horse in front of the K-Mart when you were 10 years old...YEPPERS it'll show up now. Key here to keep in mind, is that those 'lesions' do not change! Who could ask for more?
I agree with Many that you should see a specialist...but depending on where you live a GOOD or KEY specialist might not be available.... While a good NEURO PN specialist is ideal, often they aren't available? Maybe consider [and Bob please don't condemn me here?] a MS specialist? They are familiar with the old DEMEYELINATION word and could rule out MS fairly readily...maybe steer you to someone who can really zero in and help treat you. Honestly I don't think a Rheumy or an Immunologist will be much use with the whole NERVE issue, unless they are surprisingly enlightened?
There are docs out there who can help! Trick is finding them! 's and HOPE! - j

Also, just a thought. One type of specialist that hardly
anyone thinks of, is a physiatrist, usually found under sports medicine.
But if you can get one who has experience with neurological problems,
it could help.
Their job is to see the whole picture and coordinate between
all of your docs, meds & tests.

Re: Physiatrist

At Methodist, Alan was referred to a Physiatrist by his neurologist. I had never heard of such a specialist before.

We were able to get in that same day.

She looked at Alan, watched how he walked, stood on his toes, his heels (whatever Physiatrists do.....this was a LONG time ago).

But the interesting thing was that she asked him if he had been at Ground Zero on 9/11.. Alan told her "no, I have had neuropathy much longer than 7 years".

She said: "do you know how many of my patients were there on 9/11?" And how many have come down with neuropathy??"

There HAS to be some correlation here. Exposure to toxic materials, etc.???