Looking neuropathy in the face

It has been brought to my attention that posting articles that are all doom and gloom, does nothing for the people who's neuropathy symptoms are considerably milder...except perhaps scaremongering! I take the point, so once more a few truths about the disease:

1) You may feel numbness; or tingling; or pain; or a combination of the above, as a result of your neuropathy.

2) The sensations you experience may just be in one toe; or just the soles of your feet; or your hands; or your calves; or your muscles; or further in your body; or again, a combination of the above.

3) What you're feeling might last for years without changing; or just a few weeks or months, before progressing; or may not progress at all. Progression is not inevitable but may well happen.

4) You may get relief from a particular drug that is prescribed for you; or an alternative therapy; or supplement; or you might have to try a whole range of things before finding something that works; or unfortunately doesn't; or again, a combination of the above.

5)...Can you see where this is going?

Neuropathy is a disease with very few hard and fast rules that can be applied to all patients. This is partly because it has up to a hundred different causes; all of which can be influenced by outside elements and other medical problems and that's without taking into account what sort of neuropathy you have. You may come across a great deal of generalisations on the Internet and also from your doctors but that's because it's such a difficult disease to pin down and treat.

One thing is certain, purely on patient numbers alone, it deserves much more research publicity and deserves much more drug development. However, if you ask the average person on the street what neuropathy is, you'll more than likely be met with a blank stare - then try convincing them that what you're feeling is not between your ears!

HIV combined with neuropathy is just that little more complex, again because of the contributing factors that can change the overal picture but the fact is that it's a growing problem amongst the HIV population because we're living longer and quickly learning that neuropathy may be one more cross to bear because of that.

For all those reasons, you need to treat your neuropathy as something personal. Yes, there are shared experiences and lots of information about treatments and drugs but you need to take that information and apply it to your own particular situation. Take nothing for granted and assume nothing either - the numbness in your toes or fingers may be all that you ever have to worry about (especially if you find something to help) but then again, it may only be the beginning and then you can read about other people's strategies for dealing with the various symptoms and side-effects. The point is that neuropathy doesn't play by the rules of recognised illness - there's no guarantee that B will follow A! You may also unfortunately need to persuade your doctor that your case may not be comparable with everyone else. For many family doctors, unless they've got wide experience of the problem, neuropathy is just another paragraph in the textbook.

However, knowledge is most definitely power (HIV veterans will testify to that) and the exchange of information is and always will be, vital in providing support where and when it is needed. If you know your disease, you can deal with it so much better.

In the same vein, this blog welcomes all reactions and especially contributions, not only from HIV patients but also people with neuropathy stemming from other diseases like Diabetes and Cancer.

Drew50: September 2nd, 2011