What is CIDP

I have decided to start a blog to track my progression through an annoying and painful autoimmune disorder known as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). What the heck is that - it sounds complicated? This was my reaction when the Neurologist diagnosed me back in August. At that time I knew there was something neurologically wrong based on Google research along with consultations with my GP, Physiotherapist, Chiropractor and Vet (who happens to be a good friend and was actually the first to suggest it was neurological). However, I had no idea what that would actually mean and how serious/debilitating it would become. So, back to my original question:

What is CIDP? This is an autoimmune disorder that is often contracted through a flu or cold virus. It is rare - the statistics seem to settle around 1-2 in 100,000 and it is chronic (meaning there is no 'cure' but many go into long remissions). The acute version is known as GBS (Guillian-Barre Syndrome) and is equally rare. Essentially the immune system is tricked into attacking itself, in this case the attacks are launched at the myelin sheaths that cover the peripheral nerves. Think of your peripheral nerves as wires - the myelin is the plastic coating that ensures the current travels to the right place. When the myelin is damaged, the nerves misfire and can also be damaged. Myelin will regrow at a very  slow rate but actual nerve damage can be permanent. It is, therefore, a very good  thing to catch this early.

Symptoms normally affect the feet and/or hands first (the peripheral nervous system works from the outside in). Bilateral tingling, numbness, weakness, and loss of balance are the primary symptoms. People may also experience a 'brain fog', vision issues, and problems with bladder control. As with most disorders these days, there are variants depending on the symptoms. I appear to have the basic model and it has struck my feet and legs primarily. I did get some tingling in my fingers but will cover that in a later post that is more about me and less about CIDP in general.

Testing and diagnosis of CIDP is more of a 'rule out other ailments' game than anything else. In my case there was a battery of blood tests, a spinal tap (this was a most uncomfortable experience), EMG and nerve connectivity tests, and an MRI (which was ordered in August and I am scheduled to receive Jan 11 - in my case less of a diagnostic than a check up). The EMG/nerve connectivity and spinal tap were enough for my neurologist to make the call. A lot of people do not neatly fit into the criteria and I've read of many delayed or misdiagnosis as a result. Hopefully more research will be done in this area to come up with a better understanding of the disease and how to identify it.

Treatment generally follows one, or a combination of the following three options: IVIG (Intravenous Immunoglobulin), Prednisone (a corticosteroid), and Plasma Exchange. In cases where these do not work some chemotherapy drugs may be used. Another up and coming treatment is HSTC - stem cell transfer. I am currently receiving regular IVIG and Prednisone.

IVIG is a blood plasma product that is quite costly - each bottle is made up of plasma from 5000 donors. This is not an issue in Canada, but there are many in the United States who have to fight for insurance approval. The medical community is not exactly sure why IVIG works, but it does in 50-70% of cases. My lay-person understanding is that the influx of plasma confuses the immune system so that it stops attacking the myelin. Once the attack stops, the myelin can start to regrow. People on IVIG get infusions on a regular basis (normally every 2-6 weeks) and some need it for very long periods of time.

Prednisone is an immune-suppressing steroid that effectively shuts off the immune system. If used alone, a very high dose is required. Once the immune system is suppressed, the myelin can begin to regrow. The problem is that long term use of high doses of Prednisone comes with a laundry list of side effects that get scarier over time - everything from weight gain to osteoporosis.  Most doctors prefer to avoid these if possible and will use smaller short-term courses of Prednisone in combination with other treatments instead. Many Americans who face insurance problems end up on Prednisone as it is cheaper than IVIG. I am currently on a weaning does of Prednisone to help give an added boost to my IVIG treatments.


Plasma Exchange is just that - your own blood is taken out, filtered and re-introduced. This essentially re-sets your immune system. People with small veins may have trouble with this treatment. I don't know a lot about it and have not experienced it myself, so will leave it here. Google will be more than happy to help you find out more.

I'm not going to address the alternate treatments here as I know even less about them than Plasma Exchange.

Apparently the three main treatments are effective in up to 80% of cases. Recovery varies depending on a number of factors, not least is axonal nerve damage. Pretty good odds though  - especially for a 39 year old with no underlying health conditions (she says hopefully).

There is lots of information out there and I recommend you look things up if you have questions. The GBS/CIDP Foundation is a great place to start. I apologize for any errors in the above explanation - please let me know if you find any and I will correct it. My goal here was to give a brief overview, not to get into the minutia of this complex and widely varied disorder.