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Anonymous
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PML Survivors
      #197906 - 06/27/06 07:14 PM

Hi! My name is Ron and I am living with HIV and PML. Myself and a fellow PML survivor wanted to test the viability and usefulness of an email support group for others affected by PML. Therefore I have started a Yahoo Group to facilitate this idea. I personally will be posting more details of my own struggle with this illness and invite others to do the same on the site. It seems little is still known of this affliction, so at best this could lead to new ways of seeking treatment for some and at least a forum for finding inspiration and venting frustrations for others. It has been personally frustrating and isolating for me not being able to efficiently find others with stories to share regarding their experience with PML. I thought it might be helpful to initiate an informal group to alleviate some of this frustration. I ask that you take a moment to join this group TODAY! Please be kind and share anything that you feel willing to share, be it about affective medical treatments, recovery successes, relationship struggles, rejection, finding employment, whatever! Your story just may prove invaluable to another. I am going to post this invite here and on AIDSMEDS.com, but PLEASE do your own soliciting so that this can grow. Thanks very much for your time!

Related Link: http://www.ninds.nih.gov/disorders/pml/pml.htm
Post message: PMLSurvivors@yahoogroups.com
Subscribe: PMLSurvivors-subscribe@yahoogroups.com
Unsubscribe: PMLSurvivors-unsubscribe@yahoogroups.com
List owner: PMLSurvivors-owner@yahoogroups.com

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Anonymous
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Re: PML Survivors new
      #197986 - 06/28/06 02:59 AM

http://health.groups.yahoo.com/group/PMLSurvivors/

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Anonymous
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Web address new
      #197992 - 06/28/06 03:02 AM

http://health.groups.yahoo.com/group/PMLSurvivors/

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Anonymous
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Re: PML Survivors new
      #198055 - 06/28/06 11:32 AM

What is PML?

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: PML Survivors new
      #198140 - 06/28/06 08:23 PM





Definition

Progressive multifocal leukoencephalopathy (PML) is a rapidly progressive neuromuscular disease caused by opportunistic infection of brain cells (oligodendrocytes and astrocytes) by the JC virus (JCV).

Description

PML is an opportunistic infection associated with AIDS and certain cancers. It occurs in people with inadequate immune response and carries a poor prognosis. The incidence of PML, once quite rare, is rising as the numbers of people living with persistently compromised immune systems rises. An estimated 2-7% of people with HIV disease will develop PML. The infection also occurs among people undergoing long-term chemotherapy for cancer. PML is not considered a contagious disease. According to the Centers for Disease Control definition of AIDS, PML in the presence of HIV infection is sufficient to form a diagnosis of AIDS.

Causes and symptoms

Although at least 80% of the adults in the United States have been exposed to JC virus (as evidenced by the presence of antibodies to this virus), very few will develop PML. Little is certain about what causes JCV to produce active disease, but the virus persists in the kidneys of otherwise healthy people without making them ill. Recent evidence suggests that after prolonged compromise of the immune system, the virus changes into a form that can reach brain tissue and cause disease. In PML, the JCV infects and kills the cells (oligodendrocytes) that produce myelin, which is needed to form the sheath that surrounds and protects nerves.

About 45% of people with PML experience vision problems, most often a blindness affecting half of the visual field of each eye. Mental impairment affects about 38% of people with PML. Eventually, about 75% experience extreme weakness. Other symptoms include lack of coordination, paralysis on one side of the body (hemiparesis), and problems in speaking or using language.

Diagnosis

Diagnosis is difficult, but usually relies on a neurologist and radiologist assessing the white matter of the brain on a computed tomography scan or a magnetic resonance imaging (MRI). Tests of the cerebrospinal fluid can help distinguish between PML and other diseases, such as multiple sclerosis and acute hemorrhagic leukoencephalopathy. The rapid clinical progression in immunocompromised patients is another distinguishing factor.

Treatment

Currently, there is no known cure for PML, although it sometimes responds to treatment in patients with AIDS who are taking anti-HIV drugs (such as AZT, alpha-interferon, and peptide T). Although several agents have shown some potential in the last few years, such as the highly toxic cancer drug cytarabine, none are safe enough or sufficiently effective to be approved for PML.

Prognosis

PML is usually a very aggressive disease. The time between the onset of symptoms and death can be as little as one to six months. However, some patients infected with HIV have improved without receiving treatment specifically for PML.

Key Terms


Multifocal
Having many focal points. In progressive multifocal leukoencephalopathy, it means that damage caused by the disease occurs at multiple sites.


Opportunistic infection
A illness caused by infecting organisms that would not be able to produce disease in a person with a healthy immune system, but are able to take advantage of an impaired immune response.
For Your Information

Books



Harrison's Principles of Internal Medicine, ed. Anthony S. Fauci, et al. New York: McGraw-Hill, 1997.


Periodicals


Royal III, Walter. "Update on Progressive Multifocal Leukoencephalopathy." The Hopkins HIV Report 9 (Mar. 1997).






Source: Gale Encyclopedia of Medicine, Published December, 2002 by the Gale Group




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Anonymous
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Re: PML Survivors new
      #198278 - 06/29/06 11:03 PM

Ron, I want to thank you for sharing your story and starting a PML support group. Although I am HIV+, my reply is really about my best friend/ex partner who was diagnosed HIV+ with PML two years ago. As you are aware, this illness has proved to be quite challenging from treatment to getting his medical provider to understand the disease and not "writing him off". It seems with this disease a lack of knowledge within the medical community almost plays a bigger part then the disease itself. I can happily tell you my friend went from being near death to living an almost fully functioning life with the exception of needing to relearn how to read and write which he is in the process of. I know of his personal struggles with this illness so with his permission, I will sign him up on your Yahoo Group. He currently does not have the capability to do it himself. Thank you Ron for being someone to step forward and address this challenging disease.

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Anonymous
Unregistered

Re: PML Survivors new
      #198695 - 07/03/06 03:46 PM

Hi Ron, my name is Ken and I just celebrated my 5 year anniversary of my PML diagnosis. The first three years were hell but my brain has adapted and things are coming much easier. I lost all right peripheral visionin both eyes and suffered numerous neurological issues. My vision has not improved but for the most part have adapted. From a medical perspectibe I am doing well. Do not know of others like us but am interested in joining group.

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bourbonking
Newbie

Reged: 01/23/08
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Loc: utah
Re: PML Survivors new
      #235586 - 01/23/08 07:01 PM

any updates from anyone?

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