What Is Neuropathy? A Growing Problem
By Dave R.
December 17, 2011
The problem is that patients living with HIV need doctors who will look at their situation holistically because every side effect, medication, or virus-related problem is linked to another medical area. Luckily, most HIV specialists are fully aware of that and have become "Jacks of all trades" in the medical world. You don't just treat the virus HIV; you treat everything that comes with it and for some people that's like the contents of a small medical dictionary! Neuropathy, in whatever form, is the unexpected sniper that hits you just when you thought everything was settling down in your medical life. It doesn't come with the virus, or when you begin the drug regimes, but appears later, as a result of the medication, the virus itself, or a host of other reasons. It's a mean, life-changing disease that has different causes and is different for everyone and that's precisely what makes it so difficult to treat and why doctors are just as frustrated as we are.
That said; neuropathy doesn't affect everyone with HIV. Current estimates and statistics show that at least a third of HIV-positive people will encounter neuropathic problems but that means that two thirds won't! Still, one in three, or four is pretty significant and the longer people survive with HIV, the more cases of neuropathy (amongst other things) are appearing. Then, if you do have neuropathic symptoms, they may begin with as little as numbness in one toe ... and stay that way; or tingling in the feet and hands, combined with numbness and paradoxically, pain which eventually lead to muscle weakness and some form of permanent disability. It's just that sort of disease; it ranges from mild to wild, with everything in between. The doctors try to treat the symptoms with a variety of drugs and/or supplements and alternative therapies and what works for one person, doesn't work for another with exactly the same symptoms -- are you getting the picture? Unfortunately, however much the many symptoms can be helped or not, the disease itself is, in 2011, still incurable.
This article is not meant to depress people but it is meant to be realistic. If you know what you're dealing with, then it's much easier to find a place for it in your life. Moreover, worst-case scenarios are just that: you will probably be able to find something to help your own neuropathy experience become more bearable. It may take a while, as you try this, that or the other treatment but most people will find some relief amongst the many options available. It's very important to learn as much as possible about your condition and if your doctor tells you there is nothing he or she can do, that may be strictly true in terms of curing the problem but that is never an acceptable approach in terms of living with the disease; change doctor and find someone who will support you in your efforts to control the worst aspects of neuropathy -- with a bit of luck, your HIV specialist may be the very person. Armed with facts, you can work with the medical specialists, rather than passively accept a one-sided relationship. However, most first-port-of-call doctors are not neurologists and may have a limited experience of neuropathy. Plus, busy as they are and under the burden of time restrictions, their very human instinct may be to usher you out as quickly as possible, to try to clear the day's backlog of patients. If you can save them some time by doing your own research beforehand and maybe setting your symptoms down on paper, you'll earn respect and establish a constructive treatment program much more quickly.
After all, you're already living with HIV; you deserve some acknowledgement for what you've already gone through but as Sir Francis Bacon said in 1597, "Knowledge is power."
Much more information about Neuropathy and HIV can be found on my website.
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.
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May 14, 2014 - The Painful Reality of Neuropathy: A Blog Entry by Dave R.
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