It really makes one wonder doesn't it? I was doing some reading about B12 levels. That's an often under-diagnosed and often outright misdiagnosed cause of PN.

I'll be bringing this up with my NP at my appt May 1st.

Barbara

OK--I checked on the web address for that Latov paper--
 

--and this should get your there:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

You certainly won't get any arguments from people on this board about needing to be one's own best health advocate. Too many of us started out trusting doctors who were uninformed or underinformed about the possible causes of our symptoms, and wound up having to do the research ourselves, and drive our own testing protocols. It makes many of us rather cantankerous. :p

In truth, most of us here, from doing the research and sharing notes, are far more informed about neuropathic conditions than most physicians, even most specialists. It makes for interesting doctor-patient relationships. Some physicians are rather scared by the loss of control that such Internet-informed patients can cause them--I don't see such physicians any more. I will not see a physician now who is not affiliated with a major teaching/hospital and/or is involved in research in his/her field of specialty him/herself. As I've posted before, most other physicians simply do not have the time or inclination to keep up on the latest knowledge, whereas we do--we are personally affected.

It does sound like your work-up has been very limited. It may well behoove you to be referred to a specialty center (though I realize that is very difficult if one does not live near a major city or university--and/or if one has lousy health insurance--that's a topic for another rant some other time).

Thank you for finding the link!

Right now I'm trying the sublingual B Vitamins in addition to the Ibuprofen. It will be interesting to see how I feel by the date my doctors appt rolls around.

Duke University hospital is not all the far from here. I may end up being referred there. If I insist hard enough. :Poke: Do I have to have a referral from my primary or the neurologist? I'll have to find out.

Barbara

Hi Barbara
 

If you truly do have "idiopathic" pn, you have lots of company here. But remember, idiopathic only means the cause is unknown at this time, not that there is not cause.

But before talking about "idiopathic" pn, it's important that you have loads and loads of vials of blood drawn to get all the applicable tests I've posted on www.lizajane.org. To know which tests are really important, you have to know a bit about the type of neuropathy you have.

I'm going to guess you have sensory neuropathy. So, look at all the tests labeled sensory neuropathy. There are a lot of antibody tests, and some genetic tests, which should be done, for thoroughness.

I don't know how old you are, but idiopathic usualyl starts in the late 60s. There are many of us younger than that here, and it's my guess that we have something a tad different, cause unknown. Maybe we had a toxic exposure way back, or had autoimmune reaction to nerve during an virus, or something else that attacked the nerves. Maybe the cause of the problem is gone, so the nerves can heal.

I think a lot of us idiopathic folk have greatly improved wtih good diet, supplements and exercise.

Pain medications can be problemmatic unless really needed. They can sedate you and make you sedentary, which is the greatest risk of all. It's important to stay active and keep sending signals to the nerves to work. Peripheral nerves do regrow, so they need stimulation. I have no opposition to pain treatment when the pain interferes with activiites, but if the pain just interferes wtih comfort and not functioning, you might be better off without it.

Alternatively, a good night's sleep is a key to healing. If you have pain at night, you might find that a medication like Klonopin, which calms the nerves, or Lyrica, would help you fall asleep. In fact, the lighter sleeping pills can help also. Anything that gets to a good night's sleep is great.

I myself am taking Klonopin at night. My doc suggested I try Lyrica, so right now I'm on a lower amount of Klonopin and a bit of lyrica. It makes me much more comfortable.

Please stick with the research and learning part. Take charge of your own care. Youll get a lot of help with that here.

Good luck.

Thanks, LizaJane!
 

Sensory neuropathy? I'm not sure what you mean.

As far as idiopathic, he didn't seem to do a whole lot of testing as I'm finding out. Not sure why he didn't bother to follow this up a bit more closely. I find that disturbing but not really surprising.

If Lyrica is anything like Gabapentin was I'm not sure I could stand to take it. I'll know more about my options as far as meds, hopefully, at my appointment.

In the meantime the research goes on. :p

Barbara

I sorry can't remember who
 

[SIZE="3"]This started with[ but my neuro flat out asked me if i drank i being so wise said ok ok once in awhile a cup of coffee Honest!! Yes alcoholism does play a part,don't believe me tell the drs. at the Mayo,also i would think aniety and stress would play a part.
I couln't feel that pin at all until they hit my thigh then OUCH but was glad to feel it...Oh well Sue:D /SIZE]

Not many docs go beyond ....
 

the basics as other than painkillers. THEY were taught there's not much else that can be done. Younger docs or neurologists who specialize in neuropathies are usually clustered in metro areas near research or teaching hospitals...

Doc who just lump it all into Ideopathic usually deal with only diabetic or alcoholic neuropathies, PERIOD. Some even decide that if you've ever had a drink in your life it's alcoholic. Write those guys off. Second opinions are good for this, it may be that your original doc is lazy or simply doesn't know about PN and what can be done. That second opinion, preferabley at a top research hospital, will probably come with a slew of tests to do and an initial diagnosis that will spur your doc/neuro/gp into action--nothing like a bit of peer pressure.

As for getting your mind-boggled, web up www.neuro.wustl/edu/neuromuscular/alfindex/htm and start reading about the world of neuropathies. scrool down to the 's-es' for the sensory neuropathies and then read some of the 'stickies' at the top of this forum. There's lots of good stuff there. In the stickies there's also a post on the different meds that have been used for PN -some stuff works for some and is horrid to others...We are each unique overall.

It's far more important to get a diagnosis that's in the correct neighborhood for your set of PN issues, then get an appropriate treatment than it is to find the CAUSE. My case as example, the ER doc had found PN in the 'net' to diagnose me, but what was the first one he'd found? Alcoholic, so the referred neuro never looked further [no longer MY neuro]...it turned out to be auto-immune, found out only after that second opinion and a further opinion at a teaching hospital. Were it not for those other opinions, I would probably be totally full-body numb and in a wheelchair. This was all before I'd access to the internet, finding all the folks here helped me confirm that my own instincts were right. So, read learn, plug away and you WILL find the treatments you need! Pain free moments for all today! - j

Just wanted to add that when Alan went to the doctor for the first time 18 years the first question the doctor asked him was "Do you drink, did you drink, and when did you stop drinking??" Alan explained that he drank like a fish in his late teens to early twenties but stopped after that and the doctor said "okay, you're not an alcoholic"

Then he hit us with (and I kid you not) "HAVE YOU EVER HAD SEX WITH A VIETNAMESE WOMAN?" We just looked at him. Here was a neurologist asking my husband if he ever had sex with a vietnamese woman!!!!

I think I blurted out "Are you out of your mind?", or something to that effect and the doctor laughed and said "no, it's a valid question".

I said "on what planet would it be necessary to know if my husband slept with anyone who is vietnamese and BY THE WAY, ALAN, HAVE YOU EVER SLEPT WITH A VIETNAMESE ANYBODY.?????

And Alan starts sputtering, "The only person I have slept with since I married is Melody". And the doctort bursts out laughing and says to Alan "No, Alan, I mean before you were married". We must have looked like two stupid idiots looking at this doctor and wondering why he is asking this stupid question.

Well, as my mouth was open, the doctor says "During the vietnam war, most of our men slept with Vietnamese prostitutes, and the men got Syphilis and now the men are all coming down with neuropathy!!!!

I was absolutely flabberghasted. I said "are you serious?". Believe me, he was serious.

So Alan set him straight that he had never been to Vietnam (my cousin did and I must ask him about this some day. lol).

I will never forget that doctor visit in all my life.

Melody

I think that would be me. :)

The pin test, yep. I had that too and when he got to right between my shin and my knee is when I could actually feel the prick of the pin itself. Before that I could 'feel' the pin but not anywhere near as sharply as I did after he got to that one level.

Alcoholism is known to cause PN. I don't drink much. Once in a while I'll have a drink, but that's pretty much it. The Neuro seemed to rule out the most common causes, among them auto-immune disorders and diabetes. I'll have to push for further testing.

Barbara

Mel that's so funny my old boyfriend was over there and he been conplaining of numb feet,i'll have to e-mail him right away..Sue;)