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Author Topic: PML Support Group started online...  (Read 1358 times)

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Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
PML Support Group started online...
« on: August 17, 2006, 06:07:02 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 started a Yahoo Group to facilitate this idea about 2 months ago. 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.

http://health.groups.yahoo.com/group/PMLSurvivors/
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

Offline J.R.E.

  • Member
  • Posts: 7,180
  • Joined Dec-2003 Living positive, since 1985.
Re: PML Support Group started online...
« Reply #1 on: August 17, 2006, 08:43:07 PM »
Hello Ron,

Thats great !! Hopefully these discussion groups, can be helpful with those dealing with PML, and be beneficial to all. People can share information.



Take care of yourself-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Eldon

  • Member
  • Posts: 2,664
Re: PML Support Group started online...
« Reply #2 on: August 17, 2006, 09:28:53 PM »
Hello Ron, it is Eldon. It is good that you are reaching out for support for PML. We all need support in one way or the other and this is a good thing. I wish you and the group the best in relating to one another.

Offline joemutt

  • Member
  • Posts: 1,042
Re: PML Support Group started online...
« Reply #3 on: August 18, 2006, 04:57:22 AM »
Tx for bringing this to the forum's attention. I hadn't heard of it,
is a test for this routinely recommended?

Offline PDXRon31

  • Member
  • Posts: 45
    • PML Survivors & Supporters
Re: PML Support Group started online...
« Reply #4 on: August 18, 2006, 11:58:44 AM »
Tx for bringing this to the forum's attention. I hadn't heard of it,
is a test for this routinely recommended?

 Hi Joemutt! Eveyone thank you for your comments. To answer your question, the testing for detecting the JC virus that like 80% of the population carries is rather difficult. Currently, the diagnosis of PML is made based upon brain biopsy and radiological findings. During a brain biopsy, a neurosurgeon removes a small piece of brain tissue so that it can be stained and examined under a microscope. Unfortunately, as many as 60 percent of brain biopsies yield inconclusive results, due to technical factors and the possibility that the small fraction of tissue removed doesn't contain the source of the problem. Understandably, both patients and physicians are often reluctant to utilize this highly invasive procedure. Still, studies such as ACTG 243, discussed below, require that patients undergo this procedure to confirm the diagnosis.

An alternative method of diagnosis is the use of magnetic resonance imaging (MRI) and computed tomography (CT) scanning. Of these two technologies, MRI seems to be the more effective, and can often be used differentiate between PML, multiple sclerosis, toxoplasmosis, and lymphoma. And these tests can be inconclusive, especially in people with a history of neurological problems or other OIs, requiring the patient to undergo a brain biopsy.

When evaluating a patient's neurological problem, physicians generally order a spinal tap (lumbar puncture) to obtain cerebro-spinal fluid (CSF). While CSF cultures and microscopic examination can help rule out certain infections, they cannot detect PML.

Using the same PCR technology used to measure HIV viral load, researchers have been able to diagnose PML by measuring JCV levels in CSF collected as part of routine evaluations. Overcoming the problems with sensitivity that plagued early PCR tests, researchers at UCSF were able to accurately diagnose 92 percent of patients with PML, including 100 percent of those whose diagnosis was confirmed by biopsy. When CSF samples from patients who did not have PML were analyzed, the test was correct on 92 percent of samples. Those patients testing false-positive for PML all had risk factors such as HIV, chronic leukemia, or neurological deficits, and may be at risk for future PML.

Although it is not currently licensed, physicians have reported using this test for patients with symptoms suggestive of PML for whom a definitive diagnosis could not be made. I hope this answers your question.
Diagnosed with HIV in 2000
Diagnosed with PML in 2005
Diagnosed with Fabulosity at birth

Current treatments: Sustiva, Combivir, K-PAX supplements, and Myelin Sheath Support.
Last labs: September 2006
CD4 507 VL Undetectable

Offline joemutt

  • Member
  • Posts: 1,042
Re: PML Support Group started online...
« Reply #5 on: August 18, 2006, 11:46:02 PM »
Thank you very much, :) Joe.

 


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