Neuropathy and HIV: A Progress Report
By Dave R.
January 10, 2013
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With over 100 possible causes and over 100 possible forms, neuropathy is nerve damage that affects roughly 30% of people living with HIV. If you're really unlucky, you may also be diabetic, or have also been treated for cancer, or are a heavy drinker, in which case your chances of suffering from nerve damage unfortunately become exponentially greater.
The bad news doesn't end there I'm afraid: once it has been established that you are suffering from neuropathy of any form or cause; you will begin plotting your way through a minefield of treatments designed to reduce the worst symptoms, including tingling, loss of feeling, and sharp, unrelenting pain. If you're lucky, the first treatment you meet will help you and keep you going for some while. However, if you are like most people with neuropathic problems, you will be trying this, that and the other medications, in the hope that your symptoms will be suppressed and if they fall short of your needs, your frustration increases.
If you see advertisements claiming to have cures for neuropathy, or clinics that say they will reverse the process; please take these with a pinch of salt and consult your HIV-specialist, or neurologist. Most scientists agree there is no cure for nerve damage, there is only the possibility of making the symptoms bearable but that doesn't prevent unscrupulous people from trying to separate you from your money.
Over 20 million Americans alone suffer from neuropathy, the vast majority being diabetic. This has led to experts taking a closer look at the traditional medications used to subdue the symptoms. The pharmaceutical industry has made millions over the decades, promoting anti-depressants, anti-convulsants and analgesics ranging from aspirin, to the heaviest opioids for neuropathy. These are drugs normally meant for the treatment of other conditions but because of their effects on the brain and central nervous system, it has always been thought that they should be able to inhibit pain signals if directed properly.
The clear lack of significant and consistent success and the rise in numbers of people suffering from neuropathic pain, has finally forced companies to get their research labs working hard on developing new solutions and the results of these investigations and studies are now emerging. Unfortunately for most people currently suffering from neuropathic problems, this may be cold comfort because as you will all know, the path between research and development and the chemists' shelves is a very long one indeed. Long periods of testing and the need to officially approve new drugs/treatments for public use mean it can be years before those treatments become available.
The good news is that progress is finally being made and the advent of more advanced technology has meant that research results at basic cellular and molecular levels are more promising. It looks as though a much wider industry-wide understanding is building up of how neuropathy works and how pain signals can be blocked or inhibited. Patience will be a virtue but in the meantime, neuropathy sufferers need to do as much research as they can and help their doctors find the best solutions currently possible.
Since the publication of this full progress report (Nov. 9th 2012), further studies have shown possibilities in the areas of spinal stimulation and spinal drug delivery from permanently implanted devices; regeneration of nerves in mice via magnetic fields and more serious studies into light treatment, electrical impulses, ultrasound and other devices such as the recently FDA-approved Sensus system. Apart from these, ongoing studies are looking even closer at the neuronal tissue that makes up nerve cells and layers protecting nerves. Even the role of antibodies and immunotherapy in neuropathic pain is now being seriously studied in an attempt to better understand the relationships with auto-immune diseases.
It certainly seems that the medical research world has finally woken up to the fact that the problem is serious and that current treatments are inadequate; but we'll need to wait some years to see which studies will lead to end-products and which will not.
You can read the full article outlining exactly what sort of progress has been made and in which areas, during the last year here at PositiveLite.com.
HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck
English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.
Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.
However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.
I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.
Subscribe to Dave R.'s Blog:
June 23, 2014 - When Push Comes to Shove ... How Far Would You Go to Eradicate HIV? A Blog Entry by Dave R.
May 14, 2014 - The Painful Reality of Neuropathy: A Blog Entry by Dave R.
March 3, 2014 - The Bug Chaser's Tale: An Interview -- A Blog Entry by Dave R.
January 22, 2014 - Please Don't Leave Me Because I Need You: An HIV Take on Separation Anxiety -- A Blog Entry by Dave R.
January 14, 2014 - Please Don't Ask Me to Say I Love You: An HIV Take on Commitment Phobia -- A Blog Entry by Dave R.
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