Just need to kvetch
 

I just talked to the PA for the neuro I'm seeing, and she told me that he is denying my request for more Lidocaine patches. (these were prescribed by another doctor) The reason? "He just doesn't prescribe those things for PN."

So then I asked her if she knew of any neuros who specialize in PN (thinking this guy doesn't get it and has gotta go) and she tells me there is no such thing and then she tells me she can give me an appointment with a guy who specializes in "neuro-muscular" and that that is the exact same thing as specializing in PN. That isn't true, is it? Sounds to me like something she just made up.

So now I'm ranting and spitting nails and there's nobody here to take it out on, so I figured there's always you guys. Whadda you lookin' at??!! Blow it outta yer shorts!!! Yeah, so what??!!

Thanks!

I'd bypass the PA and talk to the doctor! What a bunch of nonsense.

Lidoderms are FDA approved for PN (caused by shingles).
It is not stretch of the imagination to use it for other nerve PAIN.

What dufus would deny this? I've used them for YEARS for nerve pain.

People use them for sciatica, MP (which is what I used them for)
There is a study of them for knee pain.
http://www.medicalnewstoday.com/articles/22069.php
All over Google!

Geez, it is not like it is oxycontin!

I see nothing wrong with using something topical that works! Are they nutzzz!:mad:

Another neuro may be in the future, if this guy really did say that.
Insist on talking with the doc. If he won't talk to you
(or the PA is running interference) you definitely need another neuro.
The PA is a real A-whole Doofus!
(I've got a better term, but it would be censored)

I wonder if that PA got the fentanyl patch confused with the lidoderm patch...not all of them are 'bright'.

I also wonder if you have an HMO? There are kickbacks to doctors to prescribe less expensive treatments at HMOs.

Mrs D asked the HMO ????? That mite be the key...
 

IF you are NOT in an HMO? Get another appt w/another neuro ASAP! And we all know how long that can take!
IF it IS an HMO? Find and contact 'patient services' and get thee a 'patient representative' ...to plug into plans experts and thus report such can I say? What appears to be blatent ignorance of PN and meds for PN?

That PAsst is really a PA? I'd check w/the state licensing board about that too...I've done it...you'd be surprised what you mite find? In one instance the 'PA' for a doc wasn't a 'PA' at all. Another 'nurse' had lost her license and was 'practicing' as a 'nurse' in one practice. Same w/pharmacists and PA's and PT's...
Now, I don't condemn all PA's at all! My only true encounter w/one was delightful, and I'd found they listened to me and actually paid attention to brewing medical issues.
It does depend on how well you 'communicate with' this individual...Some folks work well with others? Some don't.
I agree w/all senior posters have said! Go do what you feel you must do to get what you SHOULD have in the way of treatments! Don't have a :hissyfit:
it's not productive...let us know how you do and are doing! Hope always! - j

I would call and ask why you at least deserve a reason. The PA I have dealt with seemed clueless. I am not saying this is all of them. I just feel many of us are too complex and we need someone who had more experience and higher degree.

Update: it's not quite as bad as it seemed at first, but still not great. The neuro called me later and explained that he's just never prescribed the lidocaine for PN before (the PA said "he just doesn't", which sounded to me like "because I said so") and wasn't sure what was the correct dosage. He told me he would consult with other neuros in the practice to see what they say (he's very young BTW) but also said that I might want to ask the Dr. who originally prescribed the patches for more.

Then we had some other frustrating go arounds including his multiple deflections of my point that most people with PN have more than one medication because they are more effective that way. He didn't disagree, but he didn't suggest a second med, either. Arggggh!

He wore me down for now.

Oh, two other things:

I'm not in an HMO.

And what about the claim that a neuro-muscular specialist is the same as a PN specialist--that's bull isn't it?

There is a form of motor neuropathy... and I would think a neuro-muscular specialist would be good for that type.

But for plain old sensory? A regular neuro.

You know we had a neurologist visit here at Forum Feedback and ask for ideas about patient help at his new neuro website etc.
He listed all the topics and PN was not on that list.
Considering how common this is, I was totally miffed:

http://neurotalk.psychcentral.com/thread97228.html

I think this sort of reflects how neuros feel about PN patients in general.

Can you see someone else for at least another opinion and approach? It concerns me that for something so simple he needs to ask a co worker. With my neuro and nerve meds he started me with one at a time. Then I went to a pain doc/anestesolgist and he was more knowledgable with treatment in terms of meds etc. Have you thought of seeing one?

The pain clinic at Hopkins is in the dept of anesthesiology and the docs staffed there are anesthesiologists. I always felt that was kinda odd, but it seems to be a general consensus at many places. Maybe having to do with the vast knowledge of meds and their effects & s/e that the anesthetists need to know. Also, specifically in the area of blocking pain for surgery too.

Not Bull
 

It is not bull - it is exactly what you need.

I have been treated in the Neurology Clinic at at one of the major medical universities since 2005. Last year they stopped treating PN in the Neurology Clinic and formed the Neuromuscular Clinic for treatment of neuropathy. The Neuromuscular Clinic has just been named as a Center of Excellence, by one of the leading neuropathy associations.

I have tried to avoid reference to any names, so hope the above all makes sense. But, to sum up - Yes, you want to be treated by a neuromuscular specialist.

Thanks all for your ideas and info. I do still have that appointment with the neuro-muscular specialist, plgerrard, and now that you've filled me in, I will give him a try. I just have such a hard time knowing what to believe and what not to because I've been told so many different (and often opposite)things by different doctors and other professionals. But in particular, I'm concerned about this very young PN whom I've taken to calling Doogie. He's told me things that I know for a fact are not true.

Bob and daniella, what you both are saying seems to make sense too. I could easily see how those specialties could address PN as well.

So the neuro called me back again and said that he found a 3% OTC cream that he had my local pharmacy order for me. I'll definitely try it. In the meantime, I got the doc who originally prescribed the lido patches, so in the end, I've gotten what I wanted. It seemed like a ridiculous way to do it, though.

One more question...
 

Here's what I don't understand: as long as I've been reading here, I've been seeing people say that what you want is a neurologist who specializes in PN. I'm confused as to why I want a neuromuscular specialist then. Are they the same thing? Is there such a thing as a PN specialist? :confused:

Very confusing
 

I think the Neurologists who specialize in neuromuscular disorders are the new PN specialists. I've been going to the Neurology clinic at Vanderbilt since 2004, but the beginning of 2009, they switched me to the Neuromuscular Clinic. Cleveland Clinic once had an actual Neuropathy Clinic. It is gone now, replaced by their Neuromuscular Center. I think their description of the Neuromuscular Center is better than Vandy's, so am quoting here:

Neuromuscular Center
Understanding Neuromuscular Disorders and Their Symptoms

Neuromuscular disorders strike 1.5 million Americans annually. Afflicting both young and old – and often those in the prime of life – diseases such as amyotrophic lateral sclerosis, peripheral neuropathy, myasthenia gravis, and myopathies are debilitating, often progressive, and sometimes fatal. Weakness, paralysis, respiratory distress, and intractable pain caused by a nerve disease dramatically alter quality of life for both patients and families.

The Neuromuscular Center at Cleveland Clinic specializes in the diagnosis, treatment, and research of these and other neuromuscular disorders. Specialists at the Neuromuscular Center offer comprehensive workups to achieve accurate diagnosis of nerve disease and rely upon state-of-the-art treatment modalities to optimize quality of life. Both inpatients and outpatients benefit from well-orchestrated teamwork by Cleveland Clinic specialists and allied health professionals.

Neurologists, pulmonologists, rheumatologists, pathologists, anesthesiologists, surgeons, and orthopedists join forces with orthotics, physical and occupational therapists, speech pathologists, dieticians, nurse clinicians, and social workers to offer comprehensive, compassionate care for those with neuromuscular disorders.

I think the key point is they join forces. It is a good scenario for patients, because there is more exchange of ideas and knowledge than in the typical Neurology practice.

I was worked up for myopathies, including having a muscle biopsy done. Many myopathies have a neuropathy associated with them. I would say that the doc is on the ball! I would go and see what they have to say.

Just always keep in mind?
 

That for good docs? All ducks do not quack the same! By that I mean, our symptoms may be similar, yet all are not identical. Thus more TESTING can be a good thing. It may only rule out what 'it's not? But that means stuff of the list of 'possibles'.
Making it worse is that many neuros have never 'experienced' those of us who have varied neuro issues? Other than in 'Neuro Intro 103 [pre-med]?'
The furrowed "Ah! I knew that!" Brow expression comes every time on a doc's face when I've found myself in the ER. Once diagnosed? You're gonna have to learn how to explain the 'whatever' in 30 words or less! These guys have a short attention span!
Ya gotta be nice, charming [IF POSSIBLE?] and ARTICULATE! Also keep a computer or word file of all appointments, and what's going on, including meds so you can bring it up ages from now. You'd be surprised what you can't remember from say? 2001? Medically? You get my drift, I hope.
Neuromuscular? Or PN specialist? Well, It was a NEURO who specialised in MS who diagnosed me? But he'd been around the block w/many many folks. I was tested out the wazoo...so to speak. Better to get the multitude of issues OFF THE LIST OF POSSIBLES and go to the likelys... Good testing and keep faith and hope! :hug::hug:'s - j

Thanks everyone for your input!

The (lidocaine-challenged) neuro I've been dealing with is in the University of Pittsburgh Department of Neurology, but now that I look, I don't see him listed in the group...wonder if he's an intern or...? Anyway, he's discouraged me from trying any further to find a cause, but now I'm rethinking that. I've had the standard bloodwork, an EMG and a QSART but nothing further. He said there's no point to having a nerve biopsy and I've never had an MRI either.

But the guy I'm supposed to see next-in six months!-has PN listed as a "specialized area of interest", so that sounds pretty good.

Oh and dahlek:
Why oh why would you think I'm not always nice?:ranting: Actually, I'm very diplomatic and respectful in person--really!:hug:

!
 

OK! YA HURT! ALL OVER OR EVEN IN PARTS TO THE POINT OF WANTING TO SCREAM! No? And maybe ask for amputation it hurts sooo bad. Well, yeah, it's best to simply say" w/ moisture forming in yer eye corners? Yeah It hurts! I'm so tired of it hurting, I can't even cry! TAKES TOO MUCH EFFORT rite now!!!!!!!!!!!!!! Doing this in a stoic and simple statement makes much more of an impression that one going OW! OW! OW! Get it?
BEING ARTICULATE? Means, not like " I read on 'neurotalk' that....." More like I've learned from 'various web sites' and particularly NIH or other truly credible orgs that This mite be...based on what I've read...BECAUSE of A, B, And C! Tho tests have not been done about D, E, F or G! My timetables is This, My symtoms occured Then and my problems are Thus! While you want to scream about WHAT YA GONNA DO ABOUT IT?- Don't!!!! Simply ask what do I have or not, and what can be done? Tho it's hard to be 'unemotional' about your LIFE? THIS is one time you've almost GOT to be cool, calm and clinical about all tests done before and what you think mite help if being done.
Should you ask for references from any doc about other docs? Always ask for 3-5 names - which should be easy if you live in a metro area... Then, call yer other docs for 'names' And I bet you will find that tactfully, by inclusion or exclusion the nerds or jerks will not be on the list - especially if you've had a long relationship with them. Asking is CHEAP! It also makes your other docs feel 'useful'... And they can be really so! I'd started out w/a 1/2 dozen docs for simple 'maintence' stuff before I got my PN? I've now more than a 'baker's dozen'! By having new docs that your other docs KNOW? Cross communication can and does occur! Even during coffee breaks at area med meetings. It's amazing how 'we' can be discussed about nameless or not as problems or prospects for some docs?
Joan? As for the 6-month wait? Call and ask if you can be put on a 'cancellation' list? I've done that many times w/good results adding the caveat that I'd need 48 hours notice to reschedule other things if needed. It worked! I saw a key neuro in less than 10 days due to a cancellation! But, it depends on what you do, and how well you could 'drop things' to GO.
Again, doesn't hurt to ask?
Hugs :hug::hug::hug:'s and hope and soon! - j

Get a new neuro!!!
 

If you have pn that has to do with your "nerves" not your "muscles" i would say you might want to look for a little older dr who has treated pn and understands it. Btw this is my first post on here. I am 63 yrs old and have had pn for over 11 yrs- i am on neurontin and norco.