Debbie,

As I have said on previous threads, not a lot is known about the long term effects of GBS and doctors often prescribe other syndromes and diseases to problems from GBS. I even read once that people who suffer from some forms of abnormal sleepiness have brains that look similar to people who had GBS. I don’t think anyone knows. As to your question about these tests, I have never had them.

And here I’ve always blamed it on the meds and/or the ‘condition’!

If I don’t get my mid-day nap? I’m not a happy person. NOT!

Debbie,

If you search sleepiness and GBS you will find that sleepiness and fatigue are both noted in many studies of people who have had GBS. One study said that the brain scans of people who had GBS sometimes are the same as people who have a neurological disorder that causes abnormal sleepiness. I can’t remember the name of the disorder, but it was not narcolepsy.

I am scheduled for a gastric-emptying study on April 10. Seems that GBS might have had an effect on my gastrointestinal system. I experience some fatigue, too, which I sometimes blame on GBS and sometimes on my difficulties with staying adequately nourished.

Debbie and Kelly,

I too have problems with acid indigestion. I have always just passed it off as getting older. Let me know how your studies come out.

A radioactive burger? Sounds delightful. 🙂
I will be having oatmeal. It is one of the few things I can keep down.
Thanks for the good wishes. I’ll be sure to bring a book.

Hi,
Yes, I have had a gastric emptying scan post-GBS. I was 6 yrs post GBS dx when it was done. The test showed that I do have slower than normal gastric emptying. (No radioactive burger for me, it was radioactive scrambled eggs for me…yummy!…;) My gastroenterologist believes that my slow emptying is due to damage done from my GBS, in particular the damage done to my Vagus nerve. (I am also extremely lucky to have a gastro who has a very good understanding of GBS….he has a cousin who is a GBS survivor also…..).

best wishes,
CG

I just wonder if that Brain Scan is callled PET Scan. I have had MRI”S of the brain and a PET Scan. Then way before Christmas I had an Endoscopy and they placed this capsule in the Esophagus and I had to wear a monitor for 24 hours measuring my stomach acids. Forgot what they called that test. The Endoscopy was easy but that capsule was a tiny bit uncomfortable. Not bad but I felt like a small pinching sensation. Then it eventually goes away and you end up passing it through the bowel. Really great test though to measure Gerd with.
You know! I was scared to death of something going down my throat. But that was easy! The Colonospy on the other hand I hate having done. Last one was before Christmas too and I woke up right in the middle of the procedure! LOL! They had to resadate me.When I came to I remembered what happened! LOL!

We are a “special group,” according to my doctors. Apparently it is quite rare for GBS to trigger/cause gastrointestinal problems.

LindaH, I had to laugh out of recognition for your comment on waking up during your colonoscopy. I woke up, too, but was still very relaxed – saw the camera working its way through my intestines on the monitor that was positioned on the wall – and I thought to myself, “That is one really weird tv show.” Then I fell back asleep.

My experience was not that great! Although I do laugh about it now. Poor doctor I think I scared him half to death. He was way up there inside me and when I came to I had aweful stomach cramping. I remember that pain very well. All I remember was me saying “Get IT Out! Get IT Out! OCHHHH! LOL! Then I heard him say give her more medication.
When he came to my room to let me know about the adhesions around the bowel and the Hiatial Hernia I was so drugged up that I had to get my husband to tell me what he said! LOL! He made sure I was not going to come too a second time around. But I did remember me telling him that I woke up. But was asking him if I did? He then puts his head down and nodded yes! LOL! Then he was so apologetic about it! Told me it’s rare when it happens but does happen! Just my luck huh?
Linda H

I don’t think they have given me that test before. Just MRI’s and EEG’s and EMG’s. And NCV’s along with tons of blood work. They take more blood from me than anything else. Surprised I have any left to give! LOL! And I hate needles!Hugs
Linda H

Hi again,

During my six month hospitalization with my GBS one of the worst things I had to cope with (besides the obvious of being paralyzed head-to-toe), was the agonizing pain of constant gastrointestinal cramps, along with no bowel control for four months. My doctors kept insisting that one does not have bowel problems with GBS, which is ridiculous as the nerves to the bowel and GI system are controlled by the periperhal nervous system. When a GI specialist was finally brought in he wasted no time in telling my specialists that they were very wrong, that what I was enduring was not “my inability to deal mentally with my paralysis” (as my doctors kept telling me), but a very real physiological problem that I was having due to my GBS and the pattern of nerve damage I had endured during the acute stage. Finally nearly four months to the day after I was paralyzed I regained full bowel control and function again. It was the best Christmas present ever!! 🙂 Only topped by my ability one month after this with being able to walk again.

If you are interested there is an excellent book out in softcover right now entitled: “The Autoimmune Epidemic”, the authour is Donna Jackson Nakazawa and she is a journalist and a [I]twice over[I] Guillain-Barre’ survivor. On page 7 of the book in her introduction she mentions having to be hospitalized for a “bowel neurological dysfunction-a complication that arises in some who have had Guillain-Barre’ syndrome”. It is the only mention I have seen in print acknowledging GI/bowel problems [I]post[/I] GBS.

Hope this helps, best wishes to all,

CG:)

I just Googled Chronic Fatigue Syndrome symptoms. I got a link to the CDC website.

Here that link is:

[url]http://www.cdc.gov/CFS/[/url]

And here is the text under diagnosis:

Diagnostic Challenges

Diagnosing chronic fatigue syndrome (CFS) can be complicated by a number of factors: 1) there’s no diagnostic laboratory test or biomarker for CFS, 2) fatigue and other symptoms of CFS are common to many illnesses, 3) CFS is an invisible illness and many patients don’t look sick, 4) the illness has a pattern of remission and relapse, 5) symptoms vary from person to person in type, number and severity, and 6) no two CFS patients have exactly the same symptom set.

These factors have contributed to an alarmingly low diagnosis rate. Of the four million Americans who have CFS, less than 20% have been diagnosed.

Clinical Evaluation

Because there is no blood test, brain scan or other lab test to diagnose CFS, it’s a diagnosis of exclusion. Your health care professional will first take a detailed patient history, including a review of medications that could be causing your fatigue. A thorough physical and mental status examination will also be performed. Next, a battery of laboratory screening tests will be ordered to help identify or rule out other possible causes of your symptoms. Your professional may also order additional tests to follow up on results of the initial screening tests.

Diagnostic Criteria

Your clinician should consider a diagnosis of CFS if these two criteria are met:

1. Unexplained, persistent fatigue that’s not due to ongoing exertion, isn’t substantially relieved by rest, is of new onset (not lifelong) and results in a significant rEducation in previous levels of activity.
2. Four or more of the following symptoms are present for six months or more:
* Impaired memory or concentration
* Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
* Unrefreshing sleep
* Muscle pain
* Multijoint pain without swelling or redness
* Headaches of a new type or severity
* Sore throat that’s frequent or recurring
* Tender cervical or axillary lymph nodes

Exclusionary Conditions

Chronic fatigue syndrome can resemble many other illnesses, including mononucleosis, Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders. Medications can also cause side effects that mimic the symptoms of CFS.

Because CFS can resemble many other disorders, it’s important not to self-diagnose CFS. It’s not uncommon for people to mistakenly assume they have chronic fatigue syndrome when they have another illness that needs to be treated. If you have CFS symptoms, consult a health care professional to determine if any other conditions are responsible for your symptoms. A CFS diagnosis can be made only after other conditions have been excluded.

It’s also important not to delay seeking a diagnosis and medical care. CDC research suggests that early diagnosis and treatment of CFS can increase the likelihood of improvement.

Page last modified on May 3, 2006

So it seems that no test can confirm a diagnosis of CFS. I think I would get a 2nd opinion on your diagnosis from another dr.

Kelly