Annoying stomach discomfort and brain fog

[kangaSue]

WOW, @kangaSue, you blow me away with that post. Where did you learn about that?

MALS was one of the differential diagnoses that could fit for the severe GI dysfunction symptoms I have. Others were SMA Syndrome and renal Nutcracker Syndrome (NCS). This latter one (NCS) was what I was diagnosed with but have somewhat atypical symptoms for this in having mostly GI dysmotility symptoms.

It's not that uncommon to have all three conditions together and it may still be the case the case that I have MALS too but tests don't show "any significant celiac artery stenosis." That casts just an element of doubt as imaging is not 100% accurate or infallible and it's not uncommon for MALS to be eventually found in repeating imaging studies multiple times.

It's worth noting that NCS has been misdiagnosed as CFS in some cases as it can affect your left adrenal gland from increased venous pressures and cause significant fatigue in some people. All 3 conditions mentioned here also cause POTS too in about 20% of cases.

 

[yurybx]

I did a dopplerography of the celiac trunk, and it showed that my vessels are completely healthy. MALS is excluded. That's why I keep searching.
The day before yesterday, I did an interesting experiment: I limited my food intake and ignored the feeling of hunger. And I noticed that the discomfort in the right hypochondrium was almost gone! But last night other problems began: I felt exhaustion, I could not go to bed because of exhaustion and a strong feeling of hunger. I realized that if I do not eat more food, then tomorrow I will be overwhelmed. And I began to eat without restricting myself. As a result, the feeling of hunger did not go away, but it decreased significantly. The feeling of exhaustion disappeared, but the discomfort in the right hypochondrium will return.
From this I conclude that the feeling of discomfort in my right hypochondrium may be due to overeating. Perhaps because of the constant feeling of hunger, I eat more than my digestive system is ready to digest. But where does hunger come from? Why do I stay thin with unlimited access to food?

 

[kangaSue]

I did a dopplerography of the celiac trunk, and it showed that my vessels are completely healthy. MALS is excluded. That's why I keep searching.

Did they do the test taking flow velocity measurements during both deep inhalation and exhalation?

 

[yurybx]

@kangaSue, no, the doctor simply measured the diameter of the arteries and the speed of blood flow and did not say anything about breathing. And is it important?

 

[kangaSue]

@kangaSue, no, the doctor simply measured the diameter of the arteries and the speed of blood flow and did not say anything about breathing. And is it important?

The doctor here is probably only versed in looking for plaque stenosis of the which will show up regardless of doing any particular breathing.
The celiac artery is most compressed by the diaphragm during exhalation in MALS though, more so with doing deep exhalation and the point of compression likely won't show up without doing the breathing measurements. Unless they have some experience with diagnosing MALS, few Sonographers know the proper procedure.
https://gastroenterologen.no/2013/11/the-celiac-ganglion-artery-compression-syndrome-cgcs/

 

[yurybx]

@kangaSue, unfortunately, I could not find another clinic for the diagnosis of MALS in my country.

 

[kangaSue]

@kangaSue, unfortunately, I could not find another clinic for the diagnosis of MALS in my country.

It seems to be a problem across much of Europe and I checked in a couple of other MALS forums for any doctor recommendations in the Ukraine, nothing I'm afraid.

If it's possible for you to get to Germany, a Dr Thomas Scholbach has developed an enhanced ultrasound technique for diagnosing any of the abdominal vascular compression syndromes.
https://scholbach.de/en/wissenschaf...askompressionen/truncus-coeliacus-kompression

 

[yurybx]

@kangaSue, thanks for the advice, but unfortunately, I have no money for a trip to Germany.

 

[FromHolland]

@yurybx hi, just came across this thread and curious: how are you now doing? Have you been able to find a diagnosis and or alleviate/solve the symptoms through treatment?

 

[yurybx]

@FromHolland, unfortunately, I have no news. My diseases are with me, and I do not know their causes. I also noticed that digestive problems are very related to general physical and nervous fatigue. As before, a long rest and a slow meal in small portions help me. Also, drugs help a little: gastritol (weak), vitamin C (but it harms the kidneys), phenibut (but causes a hangover the next day) and lamotrigine (provokes compulsive behavior and exacerbates osteochondrosis).
Now I better understand the suffering of my deceased mother in the last years of her life. My condition seems to have an inherited nature. I thought to do a DNA test for hereditary diseases, but in the list of identified diseases, I see the basis of fatal and severely disabling disorders.

 

[FromHolland]

@FromHolland, unfortunately, I have no news. My diseases are with me, and I do not know their causes

Sorry to hear that, was hoping you had found some improvement since your last post.

Now I better understand the suffering of my deceased mother in the last years of her life. My condition seems to have an inherited nature. I thought to do a DNA test for hereditary diseases, but in the list of identified diseases, I see the basis of fatal and severely disabling disorders.

What hereditary diseases are you considering and one the basis of what if I may ask? Is it based on your symptoms alone or did you already have results from examinations suggesting you might have one of those hereditary diseases?

 

[yurybx]

@FromHolland, I found only one clinic in my country where they do an extensive test for hereditary diseases. I have not yet done DNA tests (they are very expensive) and I have no idea what kind of hereditary disease I may have, but given my mother’s similar symptoms, this should be inherited. These are just my logical conclusions.

 

[EddieB]

I’m sorry for what you are going through. I too have suffered for many years and tried many things, none of which has helped. My troubles are more stomach, but there always is that feeling, sometimes pain, from my lower right side. Many test, like you’ve had, show nothing. With rest and time, it has gotten better, but always returns. And as of now, it’s been 6 months and shows no signs of letting up.

You might look up chronic enterovirus on this site and see if it sounds like something that could be a problem. One of the symptoms is pain on the left or right or middle. Some believe it is one of the root causes of CFS/ME. I am currently trying to get testing to see if I have it.