I want to thank you for your web site. My husband Don was diagnosed with Lypmphangiectasia
approx. two years ago. He had been sick for about 5 years prior to this and he is 54 years of age
(52 when diagnosed).
Don did not medically present as expected. Mostly he had swelling to his face, hands and feet
and chronic diarrhea. We were checking the swelling issue first. He saw numerous specialists
(Internal Medicine, Hematologist, Endocrinologist, Gastrointerologist, Dermatologist). He was first
diagnosed with an Autoimmune disease called Alpoecia Areata - hair loss from areas of the
At this point I figured there was something that the body was fighting therefore the Autoimmune
When I received a copy of all of his results, his CT showed a possible mass in the pancreatitis. I
brought this to the Doctors attention and each doctor thought the other doctor was looking after
it. They missed the Acute Pancreatitis! He was then diagnosed with Autoimmune Acute
Pancreatitis. He had no pain from the Pancreatitis and was continuing to loose weight (we expect
he possibly had the pancreatitis for at lease 6-12 months before it was diagnosed).
The doctors thought the pancreatitis was the 2nd diagnosis (first being the Alopecia
Areata) and he was treated with steroids. The first course did nothing for the
pancreatitis. Don was not getting better....he was loosing more weight and the
diarrhea did not stop. I then started to push for the pancreatitis to be resolved.
The hematologist referred to the Endocrinologist but we couldn't get an
appointment and we had waited two to three months as Don went downhill.
Finally through personal contacts we were able to see an Endocrinologist for an
Emergency Appointment. Don was admitted by the end of that day as he had
Critical Levels of Calcium, Magnesium and Potassium. (The doctors in Emerg
had not seen levels that low). Critical levels of any of these three can cause a
heart attack. (It turns out the specialist was looking for the obscure blood levels &
conducting all kinds of tests, but forgot to check the electrolytes. The family physician
thought the specialist was looking after everything and the specialist did not
communicate with the family physician)
THIS IS REALLY IMPORTANT. If you have Chronic Diarrhea - have your physicians
check your electrolytes, calcium and potassium levels to ensure they do not get too
low! Don started on supplements and we started checking these levels biweekly and
went to the Emergency for IV for them when necessary! At this point all kinds of tests
were done. They started him on a second course of steroids and this worked for the pancreatitis.
(the mass was just a very inflamed pancreatits). After a two month course of steroids the pancreatitis was resolved but
Don still had some diarrhea and weight loss.
Once Don was on a regular diet, the diarrhea and weight loss continued and started to get worse. I still believed there was
a 3rd diagnosis that had not been investigated. Don was under a doctors care and we dealt with the Acute Pancreatitis,
but he was still not getting better.
I had been researching on the Web and had about a four inch binder of different conditions. We had been seeing doctors
for 4 years by this time without a more definitive diagnosis.
Don did not completely fit into any of the disorders, but in order to rule some of them out, I suggested a laproscopic
surgery for a fat pad biopsy and a small bowel biopsy (ruling our Whipples and Amyloidosis - as he fit into these a but did
not have all of the indicators).
The doctors agreed with me and did the laproscopic surgery, a small bowel resection, biopsies and when they were in the
abdomen they SAW the Intestinal Lymphangiectasia. (whipples and amploidosis were ruled out)
Another note is that generally for an "Adult" to get Lymphangiectasia, they first have to have had pancreatitis and then only
1% of these people will get the Lymphangiectasia.
Since the final diagnosis we did well until we took a trip and most of the foods on the trip were too fatty. Don went down to
Since the trip, they have now inserted a PED feeding tube and Don is eating and taking supplements to try to increase his
weight. He still has edema and is up to 130 lbs....but not sure how much is just the edema and how much is increased
weight. He has muscle atrophy/muscle weakening, still has the diarrhea and everything that goes with chronic diarrhea,
gets muscle spasms, leg, feet and hand swelling. We still check Don's electrolytes, calcium, magnesium and potassium
Every day is a challenge for Don. Christmas is hard with all the fatty foods, but we try hard to stay away from these. Don is
fighting a good battle but it is very hard for him as before he got sick he was able to hike "The West Coast Trail". He was
very fit, so being so weak is very discouraging for both him and I.
We will both keep fighting but feel that it is so important for each patient/family to keep a copy of ALL of their medical
records. Be responsible for educating yourself and keep pushing if your gut tells you something is wrong!
Wishing you all a very Merry Christmas! Keep fighting the good fight and hopefully this horrible disease will be cured!
P.S. We also tried Acupuncture, but it did not help or resolve any of the issues.
Edmonton, AB, Canada