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: