Why is peripheral neuropathy so difficult to deal with from a neurologists point of view?

Is it because there has not really been enough research done on it or because there are not really marvellous treatment modes in place? I would have thought from a diagnostic angle that the 'Algorithms' paper for instance, shows quite a methodical way of eliminating the various causes. In the future I'm sure we'll see that that list is far from complete, which of course will reveal where our current diagnostic dilemma arises.

However even with a list of defined causes of PN it seems that neurologists just pick and choose what they consider worthy of testing. For instance if they consider that you have not had undue exposure to toxic metals then they don't do heavy metal testing. But what if I for example was eating everyday off imported crockery, that had heavy lead or mercury content? Do these kinds of evaluations get checked during importation procedures and if not, the consumer would be blissfully unaware of their exposure?

Likewise for diabetes testing once PN is established! Why does a particular neurologist decide not to do a GTT? Is it because a patient doesn't look like they would have diabetes or glucose intolerance? How can they be sure?

I realise that the field of neurology is extensive (and obviously quite elusive) but I find it hard to understand why so many people have similar negative experiences with neurologists. If a doctor has specialty training in a field such as neurology why don't they know their stuff?

So often it seems that they leave the patient feeling that their symptoms are invalid by sending them on their way totally directionless. If it is beyond them why don't they refer the patient on to either another neurologist who may be more specialist in their patient's particular symptom expression or another specialty altogether if that is warranted. Why do they leave you dumped at a time when you often feel too unwell to fight for yourself?

.....and being a true Libran I can see two sides of the story! Of course every time you sit in any doctors waiting room you see the endless stream of humanity pouring in with their little problems so I suppose the doctors get pretty disillusioned themselves sometimes - lol! They probably think to themselves "get out of my room you twit, all your test results are normal, you're not dying, let me get on with the serious stuff" .....and that is the way it certainly comes across sometimes!

Sorry Guys, I dont know why I didn,t mention where I live its a small mining town in central Queensland but I am willing to travel,I had to travel to see the last 2 one in Townsville,the other was from Brisbane but I seen him in Rocky. See if this helps.....Liz.

That is a very good question Megan, " not just general neuro's " but in the beggining of my PN problems i was very disappointed in the lack of obvious signs of PN even by several general practitioners who are taught the basics of PN in their training, only one of them, an elderly doc said possible neuritis after running a pin down my leg.
Then after constant hounding to my local doc who didn't have a one clue about burning feet, sent me to a rheumy who was another that didn't have a clue either and said he could not find anything wrong with me [ no blood tests given ] and when i asked to be reffered to a neuro, the rheumy said " i can't
see a reason why "
Then after a battle, i got to see a neuro in Geelong hospital who was suppose to be a top neuro, who done a nerve conduction test and said i had nothing wrong with me, again another idiot.

It wasn't until i found our old forum BT, that the good people here advised me to see only a neuro who knows about PN, that's when my luck changed and i got a refferal off my gp to see the Collins st neuro, when he seen the other neuro's report about the NC test, he said " who wrote this rubbish ? " and threw the report accross his table like it was rubbish ,which it was.
I hope he can find the route of your problems too.
good luck for Jan'.
Brian

I too had done the rounds looking for a proper neuro to help me. I saw 2 neuros and 2 GP's who had no idea what was wrong with me but refused to help me get any help either??

I saw this one clown that calls himself a well respected blaaah blah blah,and he wanted to sweep me under the rug because he didn't want anyone to know that he couldn't figure out what was wrong with me.

Finally through the information I got from the forum, I requested to see a "small fibre specialist".

Though I must admit the best advice and information I ever received on my condition was from the people on this board. The collective wealth of knowledge is unbelievable.

If you are willing to travel to Sydney I can give you the details of the small fibre specialist,although I dare say in the whole of Queensland there is a chance you might find one,especially in Brisy.

This is a letter my GP wrote to the 2nd Neuro its a load of poop.Please review Liz with diagnosis in 2003 of PN.She still has severe pain of both feet to the knees but manageable on maximum dosage of Neurontin Tegretol 50mg nocte.During early December 2005 she suddenly had 2 atypical seizures at home.She was admitted to hospital here and then transferred to Mackay Base Hospital in critical condition-Glasgow11 sianotic and poor ventilation.She recovered slowly in ICU.No cause was determined for the seizures.Since her discharge,she has developed increased lower limb pain and pain in both hands.She also also complains of a bizzare loss of sensation over herwhole body.Examination reveals no sensation, absent ankle reflexes and marked weakness L>R She remains concious,alert and oriented.At times she may be depressed.This is why I am not 100% sure that its PN I have who knows ?~~~~~~~~~~~Liz M

Sheesh they love getting in that little line about depression, don't they? When will they EVER learn that if depression comes, in most cases, it is AFTER struggling with pain and fatigue.....and incompetent diagnosticians!

When they say in the letter: "Examination reveals no sensation, absent ankle reflexes and marked weakness L>R" does that mean they confirmed what you said about having "bizarre loss of sensation over the whole of her body"? If so, these are at least objective signs which they can't refute.

Have you had EMG/NCV's done and any recent brain/spinal MRI's?

Liz, you may want to phone around a bit especially any large teaching hospitals in Queensland, get onto their neuro departments and tell them you don't know what to do, you need help desperately and fire away with your questions, they may put you onto a neuro that can hopefully point you into the right direction.
good luck
Brian

I cant look for another Neuro until after the 7th Jan. thats when this vibrator comes out (stimulator) no other Neuro would touch me with it in,even my GP told me to sue the NEUROSURGEONS @$$.He totally wasted $60.000 and no I did not make a mistake,(westfund,medicare,wallet)Another useless piece of information.HAPPY NEW YEAR ONE AND ALL. HUGS AND XXX. Liz M.

All the fireworks are great this year. Standing on our deck and seeing them around us as midnight has been and gone they are still going! I suppose technically with daylight saving then we should be waiting 'til 1 am. It's such a hot night here in Melbourne I'm sure many people will stay up.

HAPPY NEW YEAR 2008 everyone!

Thank you Megan, and all the other Aussies out there Happy New Year!
And Happy New Year to everyone here!