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May 3, 2007 at 9:59 pm #4927
It’s been almost 8 weeks since I got out of the hospital. This Monday I go to the neurologist for his diagnosis, either GBS or CIDP. The initial IVIG treatment wore off last week. How are the symptoms for GBS and CIDP different?May 3, 2007 at 10:26 pm #42499
I’m a relative newbie myself, but my understanding is that CIDP is the relapsing form of GBS. I’m sure others on this site can explain it much better than I can, but with my CIDP when I get symptomatic, I go down FAST. Sounds like you had good results with IVIG – I can get a possible 4-5 weeks (sometimes less depending on stress and overactivity) before I start showing symptoms. These include progressive weakness in hands, arms, and legs to the extent that I can’t walk, lift a teacup, and get VERY emotionally drained. I also feel extreme fatigue and sleep quite a bit. Hope this helps. Good luck and good health!May 4, 2007 at 12:07 am #42513
This is not true. GBS and CIDP are two diffent conditions. The main differences are that GBS is often times much faster onset and is not a chronic condition meaning that it does its damage. Where as CIDP being slower onset and the damage is done and then often times will recur at different points making it difficult to start getting better from but not the rapid onset of GBS that usually lands people in the hospital for months.
Symptoms can vary for each depending on the person but all in all the symptoms could potentially be the same for each condition depending on the individual.May 4, 2007 at 6:07 am #42517
Michael,the symptoms of G.B.S. & C.I.D.P. are the same. They are both due to damage of peripheral nerves resulting from destruction of the insulating layer of myelin. This is thought to be due to our own antibodies mistakenly regarding myelin as enemy. So we have Inflammatory Demyelinating Polyneuropathies. Acute form is A.I.D.P. or G.B.S. which typically starts in the feet and works rapidly up the body sometimes paralysing the breathing muscles, the active phase during which damage is occurring is about 4 weeks, rarely 6-8 weeks. The chronic form C.I.D.P. starts slowly, develops over months or years and is active for more than 8 weeks. So the difference is in the pattern of the disease not the symptoms.
The peripheral nerves serve two main functions. There are motor nerves which send messages to muscles, there are sensory nerves which send information from the periphery to the brain. There are several types of sensory nerves, 1. Pain and temperature 2. Light touch. 3 Vibration sense. 4.Position sense (ie where your foot is in space) 5. Pressure sense. There is also the autonomic nervous system which works without us being conscious of it, this plays a part in control of heart rate, blood pressure, peripheral circulation, bowel and bladder function and is sometimes affected by G.B.S and C.I..D.P. DocDavidMay 4, 2007 at 10:41 am #42536
Thanks again, DocDavid! ~ you make these diseases easier to understand 🙂May 4, 2007 at 11:24 am #42543
I have a question. I was told that I had GBS/MF 20 yrs ago. I was never on a vent but every sense I have been fatique and arms and legs feel heavy. I can’t squeeze my eyes shut. Anyway about 6 months ago, I was where I could only walk very slowly, extremely weak to the point of feeling shaky inside and hurting real bad all over my body. My neuro said that I had major nerve damage to the legs and some nerve damage to the arms. Do you think this is residuals or am I developing something new? I will be waiting for our answer since I am very puzzled about this.May 4, 2007 at 11:46 am #42548
My dad was diagnosed with GBS 12 years ago. It took 1 month before he had to go on a vent and then he was on it for several months. He was fully paralyzed and had a long recovery period. His numbness and tingling started in his hands and then went to his feet and then his entire body. He made almost a full recovery after a year of therapy.
6years later he started experiencing symptoms again. This time he went down very quickly and was on a vent totally paralyzed with his eyelids taped shut for five months which was followed by an extended stay at Shepherd Spinal center. He had more permanent nerve damage after this episode. The Drs started calling it CIDP only because it had returned a second time. They tell us that 3% of people have a second occurance of GBS. His pattern does not seem to match either GBS or CIDP.
This Tuesday he went in the hospital again with tingiling in his hands and leg weakness. They started him on IVIG and he is having less tingling and numbness. Is it GBS a third time or CIDP? He has had zero symptoms for 6 years.May 6, 2007 at 8:57 pm #42750
I didn’t have total paralysis when I was hospitalized 8 weeks ago. I had drop foot and total numbness in both legs, and lots of nerve pain. I also had a really bad chest cold, and this may have disguised any breathing issues.
Are most GBS patients totally paralyzed when diagnosed?May 6, 2007 at 11:28 pm #42763
Michael [SIZE=1](with the french accent 😉 )[/SIZE]
No, most people diagnosed with GBS are not normally paralyzed when diagnosed. The percentage of patients who dont become paralyzed is greater than those who do.May 7, 2007 at 5:29 am #42770
AJR I cannot give a diagnosis without much more detail and examining your nervous system, if you have neuropathy affecting all four limbs you have a polyneuropathy, the cause of which must be established by your neurologist. DocDavidMay 7, 2007 at 10:27 am #42786
It seems we all differ starting with what the neuro does initially. I was not paralized, but could barely walk (very slowly) and he sent me home with NO treatment except Neurontin. I was couch bound for a couple of months only able to get to the bathroom and feed my cat. Couldn’t drive a car either. It was a long road for several more months. And now here I am 10 years later. Someone here recently said it is more correct to say “I have GBS” than “I had GBS”. Once we get it, our lives our changed forever.
Getting plenty of rest is the main thing I have to do even to this day!May 7, 2007 at 4:30 pm #42814
I was speaking with a lady over coffee the other day, her husband had/has GBS 7 years ago. Funny thing is she said exactly the same as you, she said we should say that we have GBS because there are some (and like all of us she said she doesnt understand where the 80 – 90% recovery comes in because she’s positive its not that at all) of us who are affected by it always.:(May 7, 2007 at 7:04 pm #42824
i, too, have always said i have gbs cuz i feel i do even thought they are medically called residuals.
edited part – any normal person that would suddenly be put in my shoes would say something is seriously wrong with themself
geneMay 7, 2007 at 7:34 pm #42830
Last I looked it seems there is only one neuro [either in Italy or France] that has it and is practicing…actually doing LOTS of research. Wonder what the motivation was?
Look at the ‘history of CIDP and of GBS’ and you will find that older research used to call CIDP – ‘Chronic GBS’. Since that time additional types of GBS have been ‘added to the list’. Further, CIDP has had lots of amendments that are different from GBS symptoms to include auto-immune and agressive peripehral neuropathies. CIDP now has over 20 sub-sets and seems to be growing. GBS has at least 15 sub-sets if I recall correctly.. They all overlap with lots of other conditions -cancers, auto-immune, and toxic issues. They mimic or overlap many other conditions as well, endocrine, cancers and who knows what else? Diagnosing is the key in my mind…sooner the better. Treatments for the SYMPTOMS once all the right tests are done and in really don’t change much.
As for causes? Soo many, many life aspects can come into play: infections, toxins, stresses, environment…well we do not live in laboratories. Focus on the diagnoses and treatments, causes, may be a mystery, but you may find that as some other issues develop that, they may all be related. At what time and why and how are mysteries…But It all Happens!
Me? It took me well over a year to get a diagnosis. With my first IVIG I could walk for an hour without PAIN! That I like?!!!!May 22, 2007 at 9:54 pm #43916
I owe you the results.
When I returned to my Neurologist, the diagnosis was GBS, and not CIDP. Other than PT, no further treatment is anticipated. There are still some lingering symptoms. I’m not walking very fast and don’t have a lot of stamina, but I’m on the mend! The neuro said to expect the recovery to take as long as 18 months. I suspect it’s going to be one of those “three steps forward and two steps back” journeys.
The most important thing about this experience: The pain and exhaustion brought me to my knees. In desperation, I turned this over to the Lord, and when I did, the healing began. I find that every new day is a gift.
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