Do you sometimes feel very tired, your arms and legs are numb, or you have a tingling sensation? Sometimes you may not pay much attention to these things. However, in rare cases, these symptoms can be a sign of something more serious. One such rare but important condition to be aware of is called CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) . Although the name may seem a bit long, let's keep it simple.
What is CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)?
Although this name may seem a bit complicated, if we break down its meaning, we can get a better idea of this disease.
- Chronic: This means "long-term." This means that CIDP does not come on suddenly and get better quickly. It develops slowly, over a period of at least eight weeks. Sometimes the symptoms subside and then reappear months or even years later. It's like a recurring problem.
- Inflammatory: This means "inflammation" . When we get an injury somewhere on our body, it swells and becomes red, right? That's what it is. But in CIDP, this inflammation occurs due to some problem in our own body's immune system . Simply put, the soldiers who are supposed to protect our body start attacking our own nerves by mistake. This is called an ``Autoimmune Attack'' . The excessive inflammation caused by this damages our peripheral nerves . These peripheral nerves are the nerves that extend from the brain and spinal cord.
- Demyelinating: This is a bit of a deep word. Our neurons have a protective covering around them. It's like a plastic sheath around an electric wire. This covering is called the ` (Myelin Sheath)` . This myelin sheath is what allows nerve messages to travel quickly and accurately. `(Demyelinating)` means that the myelin sheath is destroyed or damaged. Then, just like when the plastic on the wire is removed, the current leaks, and nerve messages don't travel properly.
- Polyneuropathy: "Poly" means "many." "Neuropathy" means damage to the nerves. Polyneuropathy means damage to many peripheral nerves in the body at the same time. This can cause various problems such as muscle weakness, numbness, and paresthesia.
So, simply put, CIDP is a long-term condition in which the myelin sheath around the peripheral nerves is damaged due to a malfunction in our own immune system, resulting in the dysfunction of many nerves. Do you understand?
What is the difference between Guillain-Barré Syndrome (GBS) and CIDP?
You may have heard of ` (Guillain-Barré Syndrome)` or ` (GBS)` . CIDP is a disease very similar to GBS. Doctors consider CIDP to be a long-term form of GBS. GBS is also a rare disease in which our immune system attacks our peripheral nerves.
But the main difference is time. The worst of GBS usually comes two to three weeks after symptoms start. But most people gradually get better after that. But CIDP lasts longer. Symptoms gradually worsen over at least eight weeks .
How common is CIDP?
CIDP is actually a very rare condition. According to researchers, the number of new cases of CIDP in the United States is between 0.8 and 8.9 per 100,000 people per year. This range is a bit large, because CIDP can affect different people in different ways, and because the disease is difficult to diagnose.
CIDP can develop at any age.
What are the symptoms of CIDP?
The symptoms of CIDP can vary depending on the type. However, the most common symptom is progressive muscle weakness that lasts for at least eight weeks. This usually affects both sides of the body equally. Specifically:
- Muscles of the hip and thigh area
- Muscles of the shoulder and upper arm area
- Palm and fingers
- Feet and toes
Imagine, you suddenly find it difficult to get up from a chair, feel like you can't climb a flight of stairs, or find it difficult to comb your hair or hold a cup. Things like this can happen.
Other symptoms that may be seen include:
- Atrophy of the affected muscles
- Numbness, tingling, or loss of sensation in the fingers and toes (Paresthesia)
- Difficulty maintaining body balance and poor coordination (like stumbling)
- Difficulty walking or complete loss of walking
- Loss or weakness of deep tendon reflexes (this is what a doctor will test by tapping the knee with a small hammer)
- Neuropathic Pain. This is a pain that feels like burning or electric shocks.
Very rarely, you may also see symptoms like:
- Difficulty swallowing (Dysphagia) and upper neck weakness
- Double Vision
These symptoms can change over time. They may start slowly, or they may progress rapidly. Sometimes they may come and go, then disappear for a few days, and then come back. If you have these symptoms, it is important to see a doctor as soon as possible. Early diagnosis and treatment can go a long way toward recovery.
Are there different types of CIDP?
Yes, there are different variants of CIDP, and their symptoms are slightly different.
The most common type is typical CIDP , which causes muscle weakness and sensory symptoms (such as numbness) on both sides of the body.
Some atypical variants are:
- ` (Multifocal Motor Neuropathy)`: This involves only muscle weakness. This weakness is also asymmetrical, meaning it can affect only one area on one side of the body, or several areas in different ways.
- ` (Lewis-Sumner Syndrome): This involves both asymmetric muscle weakness and sensory symptoms.
- ` (Pure Sensory CIDP)`: This can cause numbness, pain, balance problems, and an abnormal gait. But there is no muscle weakness.
- `(Pure Motor CIDP):`: In this, muscle weakness and loss of reflexes affecting both sides of the body can be seen, but there are no sensory symptoms.
Researchers are still studying other variants of CIDP.
What causes CIDP?
As we've discussed before, researchers believe that CIDP is caused by a malfunction in our immune system . Although the exact cause is not yet known, our immune system sees the myelin sheath as an enemy and then begins to attack it (an autoimmune reaction).
The myelin sheath is the protective layer around our nerve cells. It wraps around the long part of the nerve fiber (axon). Myelin is what allows electrical impulses to travel along the nerve properly. When myelin is damaged, these electrical impulses travel very slowly, or are lost altogether. Then the "messages" don't get to where they're supposed to go. That's what causes the symptoms of CIDP.
Imagine a well-insulated electrical wire. It conducts current beautifully. But what happens if the plastic sheath on that wire comes off in places? The current leaks, or doesn't flow properly, right? That's what happens when the myelin sheath is damaged.
How is CIDP diagnosed?
Diagnosing CIDP can be difficult because different types have different symptoms. To diagnose CIDP, your doctor will:
- They will listen carefully to your symptoms and ask about your medical history .
- A physical exam and a neurological exam are performed.
- Several special tests may be ordered to confirm the diagnosis or rule out other conditions.
What tests are used to diagnose CIDP?
These are the tests that can help confirm CIDP and rule out other causes:
- Electromyography (EMG) and Nerve Conduction Tests: These tests look at the health and function of your muscles and the nerves that control them. These tests are especially useful for looking for demyelinating changes (slow transmission of nerve signals, blockages, etc.) like CIDP. This can help distinguish CIDP from other common types of polyneuropathies.
- Spinal Tap / Lumbar Puncture: In this test, a doctor inserts a small needle into your lower back and takes a sample of your cerebrospinal fluid (CSF) . This sample is sent to a lab to be tested. In 85% to 90% of people with CIDP, the white blood cell count is normal, but the protein level is elevated. Other abnormalities in the CSF may indicate another condition.
- Magnetic Resonance Imaging (MRI) scan of the lower back: If the nerve roots in your lower back absorb a contrast dye during an MRI scan, it can help diagnose CIDP.
- Blood Tests: Your doctor may order blood tests to rule out other conditions that can cause neuropathy, such as diabetes, vitamin deficiencies, thyroid disease, Lyme disease, HIV/AIDS, and lymphoma. They may also check for certain antibodies that have been found to be associated with CIDP.
- Nerve Biopsy: Very rarely, a doctor may recommend a nerve biopsy, in which a piece of nerve is removed and examined to see if the myelin sheath has been damaged.
What are the treatments for CIDP?
There are three main (first-line) treatments for CIDP:
- Corticosteroids: Steroid medications, such as prednisolone, help reduce inflammation. For many people, these steroids alone can help reduce symptoms. However, steroids can have serious side effects, so long-term use of these medications is limited. Your doctor may also prescribe other medications (immunosuppressants) along with steroids.
- Plasma Exchange / Plasmapheresis: In this treatment, a machine separates the plasma from your blood, treats it, and then returns the plasma and blood back to your body. Simply put, it filters out the harmful antibodies in the plasma that are attacking your nerves. Plasma exchange usually only works for a few weeks. You may need to have this treatment on and off for months, or even years.
- Intravenous Immunoglobulin Therapy (IVIG): In this treatment, proteins called immunoglobulins (proteins that our immune system naturally makes to attack invaders) are given intravenously (IV). This immunoglobulin is obtained from the blood of thousands of healthy people. IVIG can reduce the damage your immune system does to your nerves. IVIG may be given in very high doses at first, and you may need to receive this treatment periodically for months, or even years.
Researchers are currently studying other treatments for CIDP. You may also have the opportunity to participate in a clinical trial for CIDP. Talk to your doctor about this.
What is life like with CIDP? (Prognosis)
The long-term outlook of the disease depends on several factors:
- Your age when CIDP started.
- How the disease develops and the type of disease .
- How quickly the disease was diagnosed and treatment started .
- How your body initially responds to treatment.
About 90% of people with CIDP can be cured with treatment. But about 50% of people have a relapse. In general, the long-term prognosis of people diagnosed with CIDP at a young age is good. If you don't get any treatment for CIDP, permanent nerve damage can occur, which can lead to some disability.
Your doctor will be able to give you a good idea of what to expect going forward based on your specific condition.
Does CIDP shorten life expectancy?
CIDP is not a fatal disease. People with this disease usually have the same lifespan as someone without the disease. So there is nothing to worry about.
Can CIDP be prevented?
Because researchers have not yet found a specific cause for CIDP, there is currently no known way to prevent the disease from developing.
When should I see a doctor? / When should I go to an emergency room?
If you have been diagnosed with CIDP, you should see your doctor regularly to monitor your symptoms and receive treatment. CIDP symptoms can come and go for months or even years, so ongoing treatment may be necessary.
Very rarely, CIDP can affect the muscles needed to breathe . If you are having trouble breathing , call 911 (or your local emergency number) immediately, or go to the nearest emergency room. This is an emergency.
Finally, things to remember
It can be scary to feel like you can't control your body. But the good news is that the symptoms of CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) can be treated, especially if you start treatment early. Remember that your medical team is with you every step of the way to deal with this condition. So take heart and follow your doctor's advice.
` CIDP, Neuropathy, Muscle Weakness, Numbness, Immune System, Myelin, Nervous System, CIDP Treatment, Chronic Inflammatory Demyelinating Polyneuropathy
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