Lots of people start out with gbs for a dx only to “graduate” to cidp. Us included. It’s not so much that it went from gbs and turned into cidp, it is more on the lines of it was caught and treated before it was allowed to progress and worsen to the time frame of cidp. For instance, if the progression goes on for more than 4-6 weeks from initial onset with no plateau, but is continual, it is cidp. If you have a good observant doc, they catch it and dx prior to that. Good in that ivig or pp or whatever is administered and additional damage is spared, but bad if the doc is not equally as aggressive if the symptoms pop back up. For example, a gbs patient could have “symptoms” of weakness, tiredness, fatigue etc., but if it is gbs, they are classified as residuals of the initial attack. If this gbs person exhibits continual INCREASED symptoms, the doc has to realize based on clinical presentation along with diagnostic tools such as a new ncv/emg, biopsies or just the persons description of the issues that are happening and then proceed appropriately.

Don’t know what your doc is thinking or has in mind, but asking about the diferentiation between gbs/cidp would be a good idea. Are there increased symptoms that are continual and progressive? Was his clinical exam worse, ie, walking on his toes, regular neuro assesment? If so, then your doc is on the right track with more ivig and you are fortunate. We too are fortunate that our doc does not do a wait and see and listens to us. Good luck

I’m not sure if my orginal dx 5 yrs ago first dx as mg and treated with hgiv 4x then after 84 days in hospital and pt dx 4 months later as gbs. Now can’t walk on toes and have no sense of vibration in them with tuning fork.

Peggy 80

Dawn kevies mom is right. GBS is acute and comes on fast, whereas CIDP is chronic and comes on more slowly. Because people today are often treated before the speed of onset is known, a diagnosis of CIDP is often not made initially. Also, GBS does linger in some people and almost everyone suffers from residuals which some doctors inaccurately think is CIDP.

Confused? Unfortunately, GBS/CIDP are rare and not a lot of money or time goes into studying them. I had GBS over 30 years ago and not a whole lot more is known today.

Take Care

Being right is perhaps not the best question to ask. People can definitely have GBS twice. People can also have CIDP that shows up looking all the world like GBS with a long space between episodes and with a relapsing remitting course meaning almost complete recovery between episodes (although more people on this site have an underlying progressive baseline to untreated CIDP). Usually GBS is faster in onset of problems and more severe, but not always. Classically GBS is caused by autoimmune damage that happens and stops and CIDP is autoimmune damage that continues unless treated. On another thread, you say that you are being treated with IV IgG and that the tingliness has increased with a delay in therapy. This sounds a little CIDPish. There is probably a continuum between the two diseases and really what is most important for you is that the IV IgG has helped you and how you are now. I also would guess that, because she loves you, your mom wants very much for you be treated as CIDP with continuing immunoglobulin if it is helping you. The right name is not as important as the fact that you are getting better.WithHope

Dear Carolyn,

I agree with your mom…and evidently your doctor thinks you have CIDP too. You had GBS 2 years ago, right? So, if you do not have CIDP, why does your doctor have you on IV IgG (IntraVenous Immuneoglobulin Gamma)??

If you had GBS 2 years ago, and it was just classic GBS, your doctor would not have you on IV IgG. A good idea may be you and mom set down with your doctor and get some answers from him/her.

Best regards.

Jethro

Whether GBS is acute or chronic has to do with the onset of symptoms. Symptoms that come on suddenly and reach their peak within two to four weeks is considered acute. Chronic GBS or CIDP is suspected when the symptoms come on more slowly or insidiously, and usually do not improve without treatment. You may have problems from GBS but that does not mean you have CIDP. I know several people who were told they had CIDP but in fact they had damage from GBS. I also know a woman who does have CIDP and must continually have treatments. The real problem is that most doctors don’t know the difference. I had GBS over 30 years ago and still have problems from it.

Dear Boomer,
[QUOTE]You may have problems from GBS but that does not mean you have CIDP. I know several people who were told they had CIDP but in fact they had damage from GBS.[/QUOTE] Most people that get CIDP via GBS will have residual damage(s) from GBS, and most people that get CIDP following GBS have a relapsing remitting course (as stated above by WH), but not always. I can site my own case as an example: Even though I was misdiagnosed, had no treatment, also contracted Transverse Myelitis along with GBS, I did start to recover after approx 4 months. However, my lower extremities did not recover nearly as fast as my upper, and my right side was slower recovering than my left (right handed). After 2 years my lower extremities were still lagging, and from what I had researched, it was my opinion that I had CIDP. I then told my pcp that after researching GBS, it was my opinion that I had CIDP and needed IVIG treatments, and it was my opinion the IVIG would improve the strength in my legs. What I heard was, “IVIG is expensive and sometimes hard to get.” I told my pcp I had good insurance, to make the arrangements for IVIG treatment. My next pcp appt was 4 mos later. I asked about the IVIG treatmernt – again, I heard, “IVIG is expensive and sometimes hard to get.” He suggested I see my neurologist (yup, same one that misdiagnosed me). Well, about 4 mos later I went into his office. I told him I had been doing research on GBS, and that it was my opinion I had CIDP, and needed IVIG treatment. So help me, the next words out of his mouth were, “IVIG is expensive and sometimes hard to get.” I got up and walked out of his office! Next move, I called the University of Louisville Neurology Dept and made an appt. About a month later I had an EMG-NVS and was diagnosed CIDP and have been on IV IgG since then. And I had a spinal tap 3 years ago for suspected MS, and still have an elevated protein level. By the way, I got GBS from a flu shot in Nov 1996 – Was totally paralyzed Dec 29th 1996.

After starting the IV IgG my leg strength went from approx 40% to 65%, but there is so much axonal damage and the nerve cells are so damaged they do not communicate with the muscles, so the neurotransmitters are not releasing the much needed chemicals to help the muscles in my legs to function properly. And I am now 65, so age is also a factor, because that reserve supply of strength that I once had is now gone…it is just the muscles working by themselves and I am less active than I was 12 years ago.

Regards to all.

Jethro

Jethro,

So sorry to hear of your continued problems and of your inability to get treated promptly. I understand there is a type of CIDP that is relapsing and remitting, but I also know some people who have been told that they have CIDP when in fact they had nerve damage from GBS. I also believe, and this is just my theory, that GBS flares at times. So little research is done on GBS and CIDP that few doctors know the difference. I am sorry that all of us have had to suffer from this lack of medical expertise. It took several years for the person I know with CIDP to get diagnosed. She is now in her late 70’s and doing pretty well. I hope the treatments, you are now receiving, bring more improvement.

Take Care, Boomerbabe

Dear Boomer,
[QUOTE]….but I also know some people who have been told that they have CIDP when in fact they had nerve damage from GBS. I also believe, and this is just my theory, that GBS flares at times. So little research is done on GBS and CIDP that few doctors know the difference. I am sorry that all of us have had to suffer from this lack of medical expertise.[/QUOTE] One of the proplems is the many variants of GBS. Then the many different types of CIDP. Nearly everyone that gets GBS will at some time get an EMG (electromyogram), and a NCV (nerve conduction velocity) test, and many neurologists (usually the better ones) will order/give an F-wave test. The doctors will use these tests and the patients clinical history to make a diagnosis, relying on the test probably more than 70%.

I agree there is not enough research on GBS/CIDP, but what research is available, and what is known about these diseases just aren’t getting out to the doctors. One of the biggest problems today is that most GP’s, Emergency doctors, and many neurologist just do not know the symptoms, and in many cases, the treatments for GBS.

I don’t want to make this long, but I think it’s important that we all understand what the EMG, NCV, and F wave test are and how they work:

An EMG (electromyogram) is usually performed when patients have unexplained muscle weakness. The EMG helps to distinguish between muscle conditions in which the problem begins in the muscle and muscle weakness due to nerve disorders. The EMG is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity. EMGs can be used to detect abnormal electrical activity of muscles that can occur in many diseases and conditions, including peripheral nerve damage (damage to nerves in the arms and legs), inflammation of muscles, muscular dystrophy, pinched nerves, etc. EMGs can also be used to determine the level of nerve irritation or injury.

A NCV (nerve conduction velocity) test is normally done at the same time as an EMG. With the NCV test, the nerve is electrically stimulated while a second electrode detects the electrical impulse ‘down-stream’ from the first. This is usually done with surface patch electrodes that are placed on the skin over the nerve at various locations. One electrode stimulates the nerve with a very mild electrical impulse. The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the speed of impulse transmission (nerve conduction velocity). A decreased speed of transmission indicates nerve disease. The NCV test can be used to detect true nerve disorders or conditions that indicate muscles are affected by nerve injury.

An F wave is the second of two voltage changes (potential differences) observed after electrical stimulation is applied to the skin surface above the nerve away from the spinal cord (distal region). F waves are used to measure nerve conduction velocity, and are useful for evaluating conduction problems in the group of nerves near the spinal cord (proximal region of nerves). In a typical F wave study, a strong electrical stimulus is applied to the skin surface above the distal portion of a nerve, away from the spinal cord, so that the impulse travels both distally (toward the muscle fiber) and proximally (back to the motor neurons of the spinal cord) — also known as orthodromic and antidromic, respectively. When the orthodromic stimulus (or forward impulse) reaches the muscle fiber, it elicits (causes) a strong M wave that indicates muscle contraction. When the antidromic stimulus (return impulse) reaches the motor neuron cell bodies, the impulse is reflected and travels back down the nerve towards the muscle. This reflected stimulus evokes the second, weaker F wave when it reaches the muscle. Axonal damage or dysfunction generally results in loss of nerve or muscle potential amplitude; whereas, demyelination leads to prolongation of conduction time. If the remyelination process occurs properly, then electrical impulses with proper nerve conduction and velocity will be seen with the EMG/NCV and F wave tests.

Regards to all.

Jethro

Hi everbody! I can’t sleep and while I’m on a roll I may as well get more helpful information out there.:)

What is CIDP? [COLOR=”Blue”]Chronic[/COLOR] [COLOR=”Red”]inflammatory[/COLOR] [COLOR=”Blue”]demyelinating[/COLOR] [COLOR=”Red”]polyradiculoneuropathy.[/COLOR] [COLOR=”Blue”]Chronic refers to the gradual course of illness;[/COLOR] [COLOR=”Red”]inflammatory means there is strong evidence that it is inflammation that causes the nerve damage;[/COLOR] [COLOR=”Blue”]demyelinating means there is evidence the damage is primarily to the insulating myelin sheaths around the nerve fibers;[/COLOR] [COLOR=”Red”]and polyradiculoneuropathy: poly means many, radiculo means nerve root, neuro means nerve and opathy means disease;[/COLOR] [COLOR=”Blue”]so, polyradiculoneuropathy means a disease of many peripheral nerves and their roots, which are the points of origin of the peripheral nerves from the spinal cord.[/COLOR]

There are four basic types of CIDP: a) Subacute – where symptoms continue to progress and worsen for at least four weeks, but not more than eight weeks before leveling off or improving. b) Chronic progressive – where symptoms continue to progress and worsen for a period exceeding eight weeks. c) Chronic relapsing – where there is more than one episode in which symptoms progress and worsen for a period greater than four weeks. d) Recurrent GBS – where each bout has a progressive phase of less than four to six weeks.

However, we are lucky to get a correct diagnosis of just CIDP…figuring out the type will probably be determined by research you put into the disease yourself…and that’s just the plain old truth in most cases.

This is what I told my neurologist. I look at my diseases as a long trip and we are sharing a planned map of how to get there. You are in the driver’s seat, but I am up-front in the passengers seat. Unlike many of your patients, I’m not thrown in the trunk with the luggage. We will both discuss the planned map, and if I have an idea of a slight detour, or treatment or new/different medication, than we will discuss my alternate route. And, of course, if you should have any opinions of detours or different treatments, we certainly want to discuss those. But I want to make sure we are both using the same map on the journey. My neurology said “excellent plan!”.

And many patients do not set up-front and discuss their disease – instead they ride in the trunk with the luggage…but when something goes wrong, they just don’t understand and are taken by complete surprise!! Every patient should know and be involved in the map their doctor is taking…GET INVOLVED, UNDERSTAND YOUR ILLNESS!

Warmest regards.

Jethro

I have been reading this thread and also talking with other people with GBS and it seems to me that there are a lot of neuros who are completely unfamilar with CIDP. They diagnose everyone with GBS and alot of the time are wrong. alot of the time it should be CIDP. If you have a patient who gets GBS many times or has flare ups then its CIDP. chronic GBS is CIDP. These two diseases are very similar but one is acute and the other is chronic. The acute form is GBS it happens once maybe twice but if you get it more than that then its chronic and is CIDP. If you have CIDP you will have to have consistant treatments to get better.
for those who get flare up or GBS more than once or twice please seek a neuro who knows about CIDP and seek more tests to get a correct dx.

Good luck and happy new year