Nomenclature - Pelvic Myoneuropathy

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Nomenclature - Pelvic Myoneuropathy

Post by webslave »

I have suggested PELVIC MYONEUROPATHY.

MYO = connected to muscles
NEURO = involving nerves
PATHY = disorder, disease.
NEUROPATHY = A general term denoting functional disturbances and/or pathological changes in the peripheral nervous system.

Dr Richard Berger suggests PELVALGIA.

Dr Jordan Dimitrakov likes pelvic myoneuropathy.

More feeback from doctors to come ...
Last edited by webslave on Sat Mar 17, 2007 2:17 pm, edited 3 times in total.
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Post by webslave »

Dr John Krieger's comment:
Sounds like you are proposing a sequence of events that follows another "insult/insults" that start a process. Thus, I'm not sure that your analysis, even if correct, addresses the "cause" issue.

The problem is that myoneuropathy is a histopathological/pathophysiological term. As far as I know, there is no proven pathophysiological sequence of events. No clear histopathology is apparent in most cases.

Thus, I am uncertain that pelvic myoneuropathy is an improvement over current terminology.

From my standpoint, the key is to understand the cause/s or sequence of events. Once there is progress there, then more appropriate terminology will become apparent.

JNK
Last edited by webslave on Fri May 16, 2003 8:15 pm, edited 1 time in total.
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Post by webslave »

Dr Michael Pontari's comment on "pelvic myoneuropathy":
That sounds like a pretty accurate name. The key will be to link these findings to symptoms before changing the name, but I agree with your idea.
Last edited by webslave on Fri May 16, 2003 8:14 pm, edited 1 time in total.
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Post by webslave »

Dr Anthony Schaeffer's succinct comment:
The name (pelvic myoneuropathy) is correct but there are a lot of steps that are lacking to support it.
Last edited by webslave on Fri May 16, 2003 8:14 pm, edited 2 times in total.
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Post by webslave »

Dr. Jerome Weiss has suggested "Pelvic Myoneuropathy Syndromes" to avoid the label sounding like a single, specific disease. My feeling on that comment is that Pelvic Myoneuropathy Syndrome (singular) would be preferable, since there are not several such myoneuropathic syndromes at play. Whether or not to append "Syndrome" is a moot point.
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TK

Historical Considerations

Post by TK »

Howsabout "Webslave-Dimitrakov Syndrome" in honor of two who have made a lasting contribution to our understanding!
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Post by webslave »

Aaaaaw! :pleased:

Thanks for the thought, but I think a truly descriptive name is what we need, which is why I don't like the vague CPPS moniker.
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Post by webslave »

Just spoke to someone (who shall remain nameless, and who went to the big IC shindig in Kyoto recently). He read the pelvic myoneuropathy definition, agrees completely with it, but says "What's the point of the discussion on nomenclature?" Apparently, the attendees at Kyoto basically decided that the nomenclature was to be "CPPS with subdivisions", as in : CP/CPPS or IC/CPPS (or CPPS/CP and CPPS/IC) and "whatever other categories we can come up with". He said people are attached to the CPPS moniker, and they like the male/female sexual division of IC and CP (invalid though that may be, condemning men with IC to the CP label).

I pointed out that CPPS is vague and mysterious and that a name that ties the condition firmly to pathophysiological processes would be far preferable, and he agreed, but it sounded to me as though the decision on naming had already been taken. I'm not sure the situation should merely be accepted as is, Kyoto or no Kyoto.

For one thing, it excludes the CP-oriented uros from the decision making.
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Post by webslave »

What happened at Kyoto on this topic:
http://www.algonot.com/news_details.php?ID=7
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Post by webslave »

This controversy continues, and has now engulfed the Interstitial Cystitis world as well:
At last month's 2006 International Symposium: Frontiers in Painful Bladder Syndrome and IC (Bethesda, MD), the European Society For The Study of IC/PBS (ESSIC) announced that they would no longer be using the name "interstitial cystitis" in favor of a new name "bladder pain syndrome (BPS)." They also proposed a drastic change in the diagnosis methodology that created a dramatic and somewhat hostile debate during the conference.

ESSIC believes that the diagnosis of IC needs to be more rigorous and demanding with specific classification criteria so that it cannot be confused with other, similar conditions (such as OAB). Specifically, they require that a patient MUST have pain associated with the bladder, accompanied by one other urinary symptom. Thus, a patient with just frequency or urgency would be excluded from a diagnosis. They also strongly encourage the exclusion of confusable diseases through an extensive and expensive series of tests. A diagnosis of IC would then be confirmed with a hydrodistention during cystoscopy with biopsy.

One novel point in their proposal is a ranking system based upon the physical findings in the bladder. Patients would receive a numeric and letter based score based upon the severity of their disease as found during the hydrodistention. A score of 1-3 would relate to the severity of the disease and a rating of A-C represents biopsy findings. Thus, a patient with 1A would have very mild symptoms and disease while a patient with 3C would have the worst available symptoms. It's not a bad idea to have a severity rating scale but there are other issues that will, undoubtedly, prevent this from being implemented in the USA and other countries.

The primary argument against their proposal is COST. With such rampant underinsurance or lack of insurance in the USA, few insurance companies would support the idea of expensive, invasive testing when other more affordable means may be available. Many countries lack the basic equipment to do this testing and/or lab work. Their proposal simply doesn't incorporate the day to day reality of medical care in a non-socialized health care system. When we asked representatives from Mexico if they felt that they could implement this new system on a national level, they said "No."

ESSIC's proposed change in the way IC would be diagnosed is a more invasive and traumatic method of handling a new diagnosed patient. The trend in the US in the past few years is to start the diagnosis process without invasive, traumatic procedures, perhaps by using the PUF or ICSI questionnaires. If, after 3-6 months of therapy, a patient does not respond, then more invasive diagnostic testing is suggested.

As several patient advocates stated during the meeting, a name change now could be disastrous to the public awareness campaigns which have been launched throughout the world, particularly in those countries where IC has recently been approved for disability insurance. It will also create tremendous confusion among doctors and the public and, basically, ignores the last 20 years of extensive PR campaigns.
It is still clearly apparent to me that "pelvic myoneuropathy" is a term that is best applied to these disorders. Virtually all modern research is pointing to an interplay between muscles and nerves as key in the etiology of IC and/or CP/CPPS in the majority of male and female patients.

I hereby make the term copyright and royalty free. Anyone can use it without any attribution to me or this website.
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Re: Nomenclature - Pelvic Myoneuropathy

Post by jm8911 »

Slightly off topic here but I remember reading a definition of Pelvic Myoneuropathy somewhere (Wikipedia?) that said many people who suffered from this also suffered from allergic or other inflammatory conditions ( Eczema, asthma,etc...)

Does anyone remember seeing this and can anyone offer any explanation to as why this may be true?

JM
Age: 51 | Onset Age: 40 | Symptoms: Chronic Epididymitis , Perineal Pain | Helped By: Ibuprophin | Worsened By: Sitting
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Re: Nomenclature - Pelvic Myoneuropathy

Post by webslave »

Genetic predisposition to atopy. Studies are lacking. Up until just a few years ago they spent most research dollars on a wild goose chase for infectious causes. Doh!
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Re: Nomenclature - Pelvic Myoneuropathy

Post by jm8911 »

Yes, I haven't run into any data on this at all. I was just curious.
Age: 51 | Onset Age: 40 | Symptoms: Chronic Epididymitis , Perineal Pain | Helped By: Ibuprophin | Worsened By: Sitting
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