Talk:Progressive multifocal leukoencephalopathy

Two-cents worth

I am a PML survivor, and I have no specific statistical data to add, but have anecdotal experience and knowledge that contradicts several mentions in this article; I'm not interested in becoming actively involved with editing this entry, but believe that some areas of future focus might be as follows:

(1) The article says that "survivors may nonetheless have severe impairments" or something like that; I think it's important to point out that the level of "permanent" impairment among survivors is hugely varied, and can be as mild as minor balance issues and/or fine motor skill impediment, to blindness, paralysis, and severely limited mobility. I belong to a discussion board on POZ, where other PML survivors (who mostly are MUCH worse off than me) report a tremendous variation of lingering effects.

(2) There's a comment in the article about "PWA living longer and developing some other neurological problems" or something: the minor ataxia symptoms I'm now developing may be a longer-term effect of the PML (that is, it may have been "dramatically slowed" rather than "halted," or it may be the result of ARD or some other progressive condition; it's not severe, but, for example, I notice my typing speed decreasing and my incidence of typos increasing; I have minor transpositional spelling issues, akin to those often seen with dyslexic folks; I am becoming a bit clumsier, that sort of thing. My vision has been pretty consistently deteriorating over the past few years (since my bout with PML), and that deterioration is now accelerating. Particularly, I have "double vision" that is getting noticeably worse-- new glasses with a fairly high level of prism correction, three months later, do not any longer completely correct the increasing problem).

(3) I suspect that the 2005 data that indicates a median survival rate of 6 months is out-of-date. When I was being treated for PML in spring 2009, the 6-month survival rate reported in this article was about 10%; it had, in fact, increased to about 50% over the past several years, largely due to tremendous increases in the effectiveness of HAART. It seems that now-- although the disease is still not directly treatable, nor are its longer-term effects really addressable since traditional medicine can do very little to stimulate regeneration of CNS tissue (pending advances in stem-cell therapies)-- HAART seems to provide a much better chance of survival than previously. I generally hold with David Orr about a "sober view of the world" -- that is, I don't believe that an "objective" article such as this one should be overly optimistic, but I also don't believe that it should offer a "reason" for fear (I remember reading the Wiki article shortly after I was back home in 2009 after 6 weeks or so of inpatient medical care, and being notably frightened, perhaps unnecessarily). I know that data about PML is hard to come by, as it is a relatively low-incidence, low-priority neuropathy, but I heartily believe that it is crucial that this information be as up-to-date as possible.

(4) I had recently begun HAART (after a symptomatic diagnosis of PCP pneumonia and an initial diagnosis with HIV just a few months earlier) when I was hospitalized with PML. Blood work from 11/10/08 showed a CD4+ t-cell count of "less than 20" -- after about 6 weeks of a regimen of daily Atripla, my VL has decreased from about 225,000 to about 600, and my CD4+ t-cell count had increased to about 70. About 6 MORE weeks, and I was hospitalized with a tremendously debilitating development of PML, and blood work at that time showed a CD4+ t-cell count again "less than 20." 30 months later, my CD4+ t-cell count is 178 as of July 2011; it's had a sawtooth-style, bumpy rise, but it's slowly increasing. I think that "immediate reconstitution" of one's immune system is a really vague, potentially misleading descriptor.

(5) Part of the initial "treatment" for my PML was the changing of my HAART regimen from once-daily Atripla to a combination therapy of twice-daily Kaletra and once-daily Truvada, because of its superiority in crossing the blood-brain barrier. Atripla supposedly, while lauded for its success in increasing compliance due to its relative convenience, is notoriously bad at dealing with virus that "hides" in the brain. A question for further investigation might be, "has the incidence of PML among AIDS patients increased in recent years as the prevalence of Atripla as HAART for treatment-naive patients has increased?

Better statistics and sourcing needed

I reverted one of the changes made by anonymous editor 81.62.11.30, who replaced "Most patients die within four months of onset" with "If the immune system is not immediately reconstituted, patients die within four months of onset. Patients who survive PML may nonetheless be severly disabled from the disease." First, what does "immediately reconstituted" mean, and are there any specific examples? In the case of most AIDS patients with PML (and all the ones I've seen), by the time they're diagnosed with PML, the immune system is already pretty far gone and "immediate reconstitution" just doesn't happen - certainly not more immediate than four months. As for survivors, I'd like to see a study.

Anyway, this all gets back to the need for sourcing. I'm under the impression that HAART has made a difference - though some say that as patients survive longer with HIV, incidence of some neurological diseases has actually gone up - but I need to do a journal review to get the real numbers. If someone who has more time can do this quicker than me, please do. But I'd like to avoid any further changes to the article that make claims without references. If that means eliminating some of the current content until the original sources can be tracked down, so be it. ←Hob 01:18, 20 December 2005 (UTC)

(Also removed this: "though the incidence of PML in AIDS patients is believed to have come down since the advent of HAART (highly active antiretroviral therapies) which allow rapid reconsitution of the AIDS-compromised immune system." "Believed" is too vague, and "rapid reconstitution" is misleading.) ←Hob 03:50, 20 December 2005 (UTC)

References temporarily removed

User:Arcadian kindly added these references, but I'm parking them here until I can read the articles and connect them to some actual facts in our article. I have a long reading list now - lots of publications on PML in the last two years, trying to weed out what's redundant.

• Koralnik, I.J. (2004) New insights into progressive multifocal leukoencephalopathy. Current Opinions in Neurology 17, 365-370. PMID 15167073
• Kunschner, L. and Scott, T.F. (2005) Sustained recovery of progressive multifocal leukoencephalopathy after treatment with IL-2. Neurology 65, 1510. PMID 16275856
• Du Pasquier, R.A., Kuroda, M.J., Zheng, Y., Jean-Jacques, J., Letvin, N.L. and Koralnik, I.J. (2004) A prospective study demonstrates an association between JC virus-specific cytotoxic T lymphocytes and the early control of progressive multifocal leukoencephalopathy. Brain 127, 1970-1978. PMID 15215217

←Hob 04:44, 20 December 2005 (UTC)

Review in CMR

doi:10.1128/CMR.05031-11 is a huge review in a highly reliable source. JFW | T@lk 09:39, 9 July 2012 (UTC)

-pathy

I just want to note that the bit in the lede saying "progressive damage (-pathy)" is both ambiguous and not wholly accurate. First of all, the syntax leaves it up to the reader whether -pathy is alleged to mean "damage" or "progressive damage". More important, however, is the use of the word "damage" itself. Both Merriam-Webster and OxfordDictionaries.com define -pathy as either a feeling (not relevant here), or a medical approach (i.e. medical system, or type of treatment; also not what is meant here in the lede), or a disorder. One might argue that disorders cause damage, but one would not be entirely correct; and that is certainly not the literal meaning of -pathy. This interpretive portion needs to use the word "disorder" rather than "damage", and of course needs to make it clear that -pathy- means only "disorder", saying nothing about the progressive nature of the disease. (Either that, or less satisfyingly, -pathy could just be taken out altogether here.)

This may seem like a nit-pick, but it matters: These details govern the reader's quality of learning.--IfYouDoIfYouDon't (talk) 03:30, 11 November 2018 (UTC)

The implied defition of -pathy as given in this article is incorrect

I broadly concur with the comment above but the definion this person uses is too broad. In this context, the term is used technically and in medicine and pathology, the suffix "-pathy" has a very specific and simple meaning. It simply the state any tissue that is diseased (eg peripheral neuropathy, or damage to nerves outside the central nervous system which can fluctuate or improve with time). The suffix "-pathy" does not imply progressive disease. This is why PML includes P, it would not need it if any -pathy was progressive by definition. The root of the term is pathos in Greek (pain) but in this context, it has, over the centuries, taken a broader and yet more specific meaning. Not all disease processes involving -pathy cause pain. Moreover appending the term "or inflammation" is frankly incorrect. The correct suffix for inflammation is "-itis" such as hepatitis, myocarditis etc. Not all -pathies involve inflammation for example that subset of peripheral neuropathies that result from compression of nerves by scar tissue. — Preceding unsigned comment added by 90.215.176.247 (talk) 13:02, 23 June 2022 (UTC)

Gilenya added to MS meds section

I added the information about Gilenya now being affirmatively linked to PML into the MS medications section. For reference, I am a Gilenya patient but not JC positive, so for now, I don't need to worry about PML. But with these new patients being identified as Gilenya-only PML patients, I'm now starting to get JC virus tests every 6 months. Schlice (talk) 22:20, 31 December 2018 (UTC)