How is a diagnosis made then?

Establishing a diagnosis is usually based on both a physical examination of the patient and the nature of his or her symptoms and experiences. In order to confirm that diagnosis, a clinical neurophysical test usually follows but it is important to realise that 
there is often a large discrepancy between the results of an EMG test and the nature of your neuropathy. Many doctors will look at the test result alone; see little direct nerve damage on paper and then dismiss your problems as being 'light' at best. Never be afraid to stand your ground if you feel you're not being taken seriously.

Neurological testing for peripheral neuropathy may include testing for the ability to sense vibration, differentiation between warm and cold, differentiation between sharp and dull touch and the ability to tell where one is in space (proprioception). A Semmes Weinstein monofilament testing device is a common tool used today. This tool looks like a ball point pen and contains a 5mil monofilament wire. The monofilament wire is touched to the skin to determine the amount of sensory loss. Individuals with peripheral neuropathy will loose the ability to sense the touch of the monofilament wire.

EMG (electromyelogram)studies help to quantify the degree of neuropathy and can be used to establish a base line or monitor change in the progression of peripheral neuropathy. This test uses an electrical signal which is sent along the course of the nerve and timed. When compared to normal values, any variation, such as delay in the normal conduction rate may indication a form of damage that the peripheral nerve has sustained.

After the diagnosis has been established, then the doctor should assess which stage you are in. It may be useful to show what these stages are:

Stage 1- Slight loss of vibratory sensation, proprioception light touch and sharp/dull differentiation. Patient may or may not perceive sensory loss. EMG studies typically negative for change. Onset and duration varies.

Stage 2 - Apparent loss of vibratory sensation, proprioception light touch and sharp/dull differentiation. Patient does perceive sensory loss but does not typically experience severe pain. EMG studies typically positive for change. Onset and duration varies.

Stage 3 - Advanced loss of vibratory sensation, proprioception light touch and sharp/dull differentiation. Patient does perceive sensory loss and experiences sharp shooting or dull, aching, severe pain. EMG studies show the advance change. Onset and duration varies.

You'll notice that at the end of each paragraph, the words, 'Onset and duration varies', appear and these are very important because everyone's experience is different. It makes it difficult for the doctor but just as difficult for the patient who may not feel as though he or she is believed, or taken seriously.
What is neuropathy?
neuropathiehiv004006.jpg neuropathiehiv004005.jpg
One of the problems with neuropathy is, understanding what it is and the fact that neurologists will have lost you after the first sentence doesn’t really help. That means that patients are frequently faced with the: ‘trust me, I’m a doctor’ approach and go away just as confused as when they arrived. This is not really the doctors’ fault; it is a highly complex condition with many variations – if you only have ten minutes with a patient, you’re not going to use it up with explanations about neuritis and myelins!

What follows is a short basic description. If you need to delve deeper into the science behind it, you’ll need to research further on the Net (see also the Links page).

Neuro- (nerve) -pathy (sickness) is basically an interruption in the working of the nervous system. It's another auto-immune disease where, for whatever reason, the immune system attacks the nervous system.

Our nervous system comprises two parts: the central nervous system and the peripheral nervous system.
The central nervous system comprises the brain and the spinal cord and the peripheral nervous system concerns the nerves which spread out from the central nervous system. Confused already? Hopefully not yet.

In general there are two types of neuropathy. If we’re talking about damage to a single nerve, then we would call it, mononeuropathy; if several or more nerves are damaged then it is called polyneuropathy.

Now it gets a little more complicated.

The peripheral nerves (extensions growing out of a nerve cell or neuron) are also called neurites and they can be compared with electricity cables because neurites also have an external insulating material called myelin.
Myelin protects the neurites against both physical damage and electrical impulse damage to the tissue. Neuropathy occurs if the nerve cells or myelin are damaged or destroyed. You could easily compare it to a domestic short circuit and that also makes it easier to visualise.
Most HIV patients with neuropathic problems, have polyneuropathy and most of the symptoms are found in the extremities (the hands, arms, legs and feet) but can also be seen in the internal organs. The symptoms can vary, with amongst others, tingling or loss of feeling; a burning feeling (especially on the feet and hands); itching, chronic pain, or combinations of some or all of them. Long term neuropathy can lead to paralysis and even wasting of the muscle tissue (atrophy).

Unfortunately, the potential problems don’t end there.

Neuropathy can also attack the so called, Autonomic Nervous System; a term for the part of the nervous system that works involuntarily – we have no control over it. This system controls things like heartbeat, blood pressure, digestion, certain muscular and lung functions, liver and kidney operations, sexual activity and so on. To put it simply; things which work in the body without us being consciously aware of them.
If neuropathy begins to affect the autonomous nervous system, then a whole range of activities may cease to function normally. Blood pressure problems (dizziness on standing upright); drying up of sweat, saliva and tear glands; urine retention (not being able to empty the bladder); impotence, constipation, stomach contents retention (not being able to clear the bowels); heart rhythm problems; breathing difficulties and so on.
Potential neuropathic problems in the autonomic nervous system
No wonder that it is so difficult for your doctor to give a clear and definite diagnosis, without resorting to generalisations.

If you put yourself in the doctor’s position, there are already a host of potential causes for your symptoms if you are an HIV patient, so he or she will be looking in a hundred other places before coming to the conclusion that neuropathy is a separate cause of some of your problems. Don't be afraid to ask questions if you have any doubts.

If you're now thinking of pouring yourself a stiff drink...won't help! Alcohol abuse can cause its own form of neuropathy!!
neuropathiehiv004004.jpg neuropathiehiv004003.jpg sq_redsm.gif sq_redsm.gif sq_redsm.gif sq_redsm.gif Why neuropathy with HIV? How is it treated? Other options or alternatives BLOG (help for the community) sq_redsm.gif Home sq_redsm.gif Site in Dutch sq_redsm.gif Links
In a recent review, the University of Maastricht wrote:
“Polyneuropathy can have many causes. The lack of established guidelines means that at the moment, there is a huge range of variables both in the nature and the number of possible diagnoses and procedures. On the one hand, there is the possibility of ‘over diagnosis’ and there are problems with the interpretation of results. On the other hand are diagnoses missed and misinterpreted and the patient is denied treatment. Finally, the diagnostic phase at the moment, takes far too long.”
Patients can hardly be reassured by this sort of conclusion and can only conclude that their chances of consistent and effective treatment depend on far too many variables.
 Link to Blog Post