Has anyone had a test for gastric emptying or brain scan since GBS?
AnonymousMarch 27, 2009 at 6:55 pm
I put this in the main forum by accident but then didnt know how to delete it!! So I have relisted it here. Sorry guys!
Just wondering if anyone has had any tests conducted for slowed gastric emptying and a scan for reduced blood flow into the brain. I ask as my specialist that i have had since getting the GBS 5 years ago sent me to a specialist for the fatigue and he ordered these tests. He is now saying that since they came back showing the above that this medically proves ‘Chronic Fatigue Syndrome’. I am not conviced as i think the fatigue is a residual of the GBS. So I was wondering if anyone else has had these tests conducted.
AnonymousMarch 30, 2009 at 7:05 pm
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.
AnonymousApril 1, 2009 at 11:47 am
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.
AnonymousApril 2, 2009 at 11:41 pm
My gastric emptying study showed that I had slowed emptying of both solids and liquids. Interesting as they say this is what is causing my nausea. I have had the nausea since the GBS started 5 years ago. The medication they gave me to aid in speeding up my gastric emptying hasn’t helped my nausea however. I have been taking the meds now for 4 months. The other medication i use to take for the nausea worked. That use to act on my brain not my stomach which is where they thought the damage was at first!!! Maybe it still is???
It is a bit of a long test to have. I had to eat a radioactive hamburger and then sit in front of a scanner for a few hours as the burger went down my digestive system. I also had to have a drink with radioactive traces in it. Take a good book with you.
Best of luck
AnonymousApril 30, 2009 at 4:52 pm
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…..).
AnonymousMay 1, 2009 at 5:27 am
Thanks for the reply. I am 5 years post GBS when my test was done and they are telling me the slowed emptying is telling them that I have Chronic Fatigue. I am telling them it is GBS residuals???? Oh well still isn’t going to make it empty any quicker I guess but i just want them to be better educated here in Australia!!
AnonymousMay 1, 2009 at 6:26 am
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!
AnonymousMay 1, 2009 at 9:51 am
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.
AnonymousMay 1, 2009 at 1:27 pm
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?
AnonymousMay 2, 2009 at 6:19 am
The brain scan is called a cerebral spect scan where you have a radioactive tracer injected into you before hand and then you are made to lay in darkness for sometime and rest your brain before they scan your brain.
How freaky waking up during a procedure. Not a nice experience!!
AnonymousMay 8, 2009 at 2:06 pm
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,
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Has anyone had a test for gastric emptying or brain scan since GBS?
AnonymousMarch 27, 2009 at 6:05 pm
AnonymousMarch 27, 2009 at 8:23 pm
I just Googled Chronic Fatigue Syndrome symptoms. I got a link to the CDC website.
Here that link is:
And here is the text under diagnosis:
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.
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.
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
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.
AnonymousMarch 28, 2009 at 12:24 am
You are a lifesaver. I have been looking for something like this and you have found what i have been looking for. I have been sent to counselling for 2 things. One being my lack of acceptance that I have Chronic Fatigue Syndrome and the other being that I need to slow down so that I will improve my health. I know the second is still probably needed but i fear slowing down too much as I thought if I had Chronic Fatigue and not just the residuals of GBS then I might end up just giving in and staying in bed all day like I imagined other Chronic Fatigue sufferers do. I mean no disrespect to other sufferers of CFS by saying this as the illness is so terrible and debilitating. I may still be a sufferer of it too as I do fit 5 of the above categories that were listed but this Professor who in South Australia is a leader in Chronic Fatigue told me these tests Medically diagonosed the illness. Now I have something to question it with.
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