"When you hear a hoofbeat, think of a horse first, not a zebra," is a medical principle. The first zebra was discovered in me in 2009 - SMAS syndrome. A small herd of zebras has been found over the years. The lead zebra was also discovered in March 2021.
My herd is called:
ARCPS - Abdominal Retroperitoneal and Pelvic Compression Syndromes
1th Zebra: SMAS (Superior Mesenteric Arterie Syndrome or Wilkie-Syndrom)
2nd Zebra: MALS (Median Arcuatum Ligamentum Syndrome or Dunbar- or Truncus Coeliacus Compression syndrome)
3th Zebra: NCS (Nutcracker Syndrome)
4th Zebra: MTS (Pelvic Compression Syndrome or May-Thurner Syndrome)
This also includes PCS (Pelvic Congestion Syndrome), which fortunately I do not have in my herd.
The leading zebra:
Ehlers Danlos syndrome of the hypermobile type hEDS
The hEDS is the cause of the following of my diseases and diagnoses:
These compressions resulted in:
Biliary reflux, gastritis type C, chronic iron deficiency, dyskinesia of the gallbladder, gastric emptying disorder, port a cath complications
cranio cervical instability
Bone marrow edema
chronic sleep disorder
Vitamin D deficiency
Dissektion A. vertebralis
Mastcellactivation syndrome (MCAS), that in turn in connection with
Many symptoms - many diagnoses - many pieces of the puzzle that don't seem to fit together. For years my family doctor and I have agreed that there must be a disease that can bring all of these symptoms and diagnoses under one roof.
Now the puzzle is (hopefully) done.
Recently I could compare notes with Prof. Sandmann in St. Elizabeth hospital in Volkmarsen on his research about SMAS-syndrome. His interdisciplinary work does not have any concrete results, but very good approaches. It is widely assumed that at least in a subset of patients, the reduced angle of departure is a result of weight loss. This in turn is caused by the problems in food intake. One suspects that this could be an undiagnosed congenital (nervous?)disease in the intestine.
Many doctors are unfortunately convinced that our complaints are "only" psychosomatic complaints and negate the Wilkie's syndrome. Perhaps this may be true on one or the other patients, but the majority only gets psychological problems because they are not taken seriously. A psychological support may lead to an improvement in the mental state. Many patients feel even a personal ordeal. If it is a good psychologist, he will encourage patients - if necessary - not to give up the search for the physical cause of the complaints.
What's behind the scenes,
which often do not want to know the people.
I would like today give an insight,
in the behind-the-scenes life.
In everyday life, I have to be on stage
and am seen by many people.
"You look good! Are you okay?
I see your strength and your courage! "
Dear people, if you would know,
what is behind the scenes!
To bundle energy I'm good,
sees every woman and every man.
What they do not see is the time,
in which even difficult to walk.
when I'm so tired and exhausted,
that sometimes I fall down.
But that's behind the scenes
and do not know the people,
I am having a few hundred calories a day
not enough of energy for the stage.
And three quarters of a liter in the sun
brings the body not in delight.
The do not know the people,
because that's all behind the scenes,
that now and then I simply can not be on stage.
The fact that I for days'm gone,
and most of the time in bed.
But that's behind the scenes,
and do not know the people.
If I jazz me up with artificial nutrition
with glucose, carbohydrates and fat,
and the body enough liquid has
with an infusion of Ringer's lactate.
You look great. I see it in you!
What know the women, what the man?
What is behind the scenes?
I think they would not like to know.
It was hard to coordinate the appointment with the specialist and the date for the Wilkie meeting. Ultimately I had to depend on Prof. Sandmann, who goes in holiday in the middle of August. Later, I can not go to Germany. At least it's difficult because the holidays are over. Unfortunately, some Wilkie had apologize to the meeting because her physical condition was not so good to make a trip. Finally we planned a meeting with four persons. One apologized shortly so we were we were three plus two members. Although we already knew us more than a year, have gone together through ups and downs, the exchange brought new (shared) experiences. I am very grateful for this hours in Bielefeld.
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