My Doctor (Diagnostic) Team

It is an exaggeration to say my doctors are members of a team... of a “doctor team” focused on finding me a diagnosis.


That said, I have seen many different specialists in the search for  that diagnosis,  but  where did I start?


I started with a primary care doctor who had me tested for all the common conditions that cause my symptoms. After she exhausted her knowledge/skill level, she sent me to a Gastroenterologist (G.I.) specialist.


He literally had me scoped up one side and down the other, had biopsies taken, cut my abdomen open to look at my bowels, and a number of other studies that revealed … “nothing remarkable“.


Next, I was referred to a Rheumatologist (auto-immune specialist). Dr. Sanders has (unofficially) assumed the role of de facto primary care in my mind because since introduced to her, she’s seemed to take a personal interest in my case.


Dr. Sanders had me tested for a variety of autoimmune diagnosis, but has been unable to find one that fits my situation.


She referred me to a Geneticist who examined me looking for any physical or family history of any other condition that might have protein losing symptoms. He too was unsuccessful.


Although not referred to look for my diagnosis, I did see a few other doctor types for secondary issues. I saw a doctor who specialized in communicable diseases, and I saw a neurologist. Additionally, I’ve had broken bones, legal blindness, pulmonary distressing conditions, and cardiology tests; all of which required different doctor types.


All of my doctor’s except the very first one; the one that discovered my protein was low, was a general public practitioner. All the others were, or are, veteran’s administration doctors.


I called one of my doctor’s today and asked about non-veterans with my condition getting diagnosed. I asked for her advice to people trying to get a diagnosis.


She said, primary care not withstanding, her recommendation is to start with a Gastroenterologist. She also said that VA doctor’s aren’t normally as aggressive as civilian doctors so someone seeing a G.I. doctor outside the VA might have better results finding a diagnosis.


I’m writing this because I was recently asked if I knew a doctor who might be able to make a diagnosis in a case much like mine. I wish I could. And, it’s from this desire, that this post is generated.

Why Is Getting A Rare Disease Diagnosis So Difficult?

The following is an excerpt from about .com. Recently I was asked if I could recommend a doctor for someone. This prompted me to start looking.  I did go to the Mayo Clinic in Rochester, MN in 2007. 

I saw a specialist there who ordered some tests which indicated "Menetriers" disease.  The VA unsuccessfully tried to verify this diagnosis.

I had a upper-GI (EGD) endogastric duodenoscopy, as well as a few other tests.  I can't remember that doctor's name.

I came across the following article that I think explains some difficulties we have when trying to get a diagnosis.

It can be a long, frustrating process
From
Updated August 21, 2009
About.com Health's Disease and Condition content is reviewed by their

You have been waiting forever to see a specialist
It’s difficult to get an appointment with some doctors, most of all those who specialize in rare diseases. It may be 3 to 6 months before you can see someone who has a heavy schedule. It can be disappointing to wait a long time only to be told that they’re not sure what you have or that they want you to go see another specialist.

Telling your story was easy the first 50 timesI know a mother of a child with a rare disease who has typed up some pages explaining what her daughter’s disease is, her medical and surgical history and her current medications. The mother hands copies of these pages to each new doctor who examines her daughter so she won’t have to repeat everything yet again. You may feel as frustrated as she does, having to give the same information many times. It may seem as if the doctors don’t read your chart or look at your test results. Seeing new doctors adds to the stress of getting a diagnosis.

CLICK HERE FOR FULL ARTICLE!!! It is very good.Mary Kugler, R.N., former About.com GuideMedical Review Board

Idiopathic Protein Losing Enteropathy (PLE)

IDIOPATHIC PROTEIN LOSING ENTEROPATHY in a 43y/o Caucasian Male.

Mr. Taverne was diagnosed with (PLE) in the fall of 2002. He presented in the ER with c/o dependant edema of scrotum and lower extremities.

Blood workup noted a marked deficiency of Album <1 and a total serum protein of 2.0

The pt was referred to the Veteran’s Administration for tx.

I have had EGDs, colonoscopies, small bowel full thickness biopsies, gastric biopsies. All of which showed nothing remarkable. At the Mayo clinic, however, a doctor did make the diagnosis of Menetrier’s disease which is also known as hypertrophic gastropathy.

The VA was unable to confirm this diagnosis. However, the VA did prescribe the recommended tx which was subcutaneous octreotide (sandistatin) injections. This rx yielded marginal results which seemed to decrease over the course of a few months.

Prior to the octreotide, I had gone the prednisone route, the amuran, cytoxan, humera and others, It seemed the prednisone did some good keeping my protein up some, but the side effects were terrible. The Humera seemed to work very well keeping my Albumin above 2 for about a year. I then had a positive AFB in my spinal fluid which meant I’d have to be worked up and treated for tuberculosis meningitis.

My spleen clotted, and I had to have it removed after about a week. I had to have bypass surgery on my leg after I seemed to develop a neuropathy, as well as a circulation issue. My toes started turning black, and they hurt like crazy. I also developed 2 sores on the bottom of that same foot. Eventually, the toes had to be taken off, and the sores cleaned out. These procedures were performed after the bypass (femoral to distal) was deemed a success.

I had plural effusions in 2009. The doctor went to drain the plural space when he hit an artery in my lung. I almost died., but I pulled through.

I had a miraculous spike in my protein that month (June) that lasted about 2 months. It’s unclear what caused it.

I’m of the feeling that it was due to a combination of factors. 1. I didn’t eat very much during that time. 2. I was given upwards of 6 units of whole blood. There might be a few other factors such as phosphorous tablets.

The doctor recently had me try taking Budesonide which is a new tx for irritable bowel syndrome. I developed severe abdominal pains and a whole lot of gas.

So Far, 112 posts Containing Intimate Knowledge of my Hypoproteinemai Struggle

Most of the time, medical information found on the internet is cold, sterilized  and hard to understand.  


That said, the idea for this blog came when I couldn’t find real life accountings of what it means to live with hypoproteinemia.


I’d ask the doctor for a prognosis, and get, “With your particular condition, Protein Losing Enteropathy, we just don’t have enough information to know what to tell you.”

I found this hard to believe. I asked them to make an educated guess as to my prognosis, and they wouldn't give me one.


You would think that if they know the function of proteins within the body, they would be able to surmise what might  happen to me in the future, but they wouldn't.


So, I’ve been keeping this blog; a journal of sorts to document my various treatments as well as side effects, successes, failures, and general experiences that have arisen due to this condition.


If you came here looking for information about hypoproteinemia, the kind of information that might benefit you or someone you love, feel free to look through the links on the right hand side of the page or go through my archives.


I do have a medical background, so I was able to keep pretty good accountings of medications took and their relative effect on me.

I discuss Albumin replacement therapy, cytoxan, prednisone, other  drugs, diagnostic procedures, doctors, nurses, medical mistake avoidance, and a lot more.


The only problem with this ‘blog’ format is that my ability to subject index is difficult.  So for you, finding specific information can be difficult.


If you are looking for specific information, use the search box on the top left corner of this page. If your search terms don't work, try substituting other words and search again.


In addition to low-protein specific topics covered, this blog, also  covers topics that could be helpful to patients of other chronic illnesses. 


I have even posted videos explaining some symptoms related to edema, my own diagnosis, and more.


Thanks for visiting, and I hope this blog is of help to you.


Regards;


Daniel Taverne

MY (PLE): New Development (Kind of)

I had an appointment with Dr. Sanders (Rheumatologist) as well as the pediatrist Monday March 1, 2010.

My Protein levels were as follows: 
*Total Serum Protein:  4.1
*Albumin:  1.8 (I think).

Anyway that's pretty good for me.  Usually I'm 1.9 and less than 1, respectively.

New Development:

The doctor is interested in weather or not oral antibiotics are contributing to my protein increase.  She said she was going to research my records to find a correlation of protein increase and antibiotics being given at the same time.

If the antibiotics are affecting a change in my protein, I may have a whipples (sp?) disease.  The problem is that diagnosis of this disease requires a small bowel biopsy and I've already had several of them; none of which showed any whipples.

whipples disease is characterized by bacteria in the intestinal walls that can and do cause  a PLE.

I may be looking at more biopsies in the future... ewww.

5 Disciplines that Might Diagnose Your Hypoproteinemia

Hypoproteinemia is not a diagnosis, it is a manifestation of some other cause.  Hypoproteinemia simply means low blood protein.  That said, the following disciplines, and possibly others, may get involved in finding the cause of yours. 


1. Rheumatologist - A Rheumatologist may check a number of areas of the body since autoimmune causes of low protein can be found in  multiple systems. Here is a list of some: Blood and blood vessels, Digestive tract (including the mouth) Glands, Heart, Joints, and Kidneys.

2. Gastroenterologist - Since the cause of your low protein might be digestive in nature, this type of doctor may want to examine you. He/she may scope your upper and lower GI tracts.  This discipline would probably do CT scans of your digestive tract first though.

3. Cardiologist: May look at heart issues in infants, children, the elderly, or others for issues causing low blood protein. It’s my understanding that weak hearts can cause protein loss. Also, there are some heart birth defects that cause  hypoproteinemia in infants and children.  Fortunately, doctors can fix some of these.

4. Hematologist: These doctors may look for clues in the blood for what might be causing a decrease in protein.

5.  Geneticist: This kind of doctor would look at your family history, and examine you for clues as to a genetic cause of your hypoproteinemia.

As always, this list is not the end-all list of specialists that might see you. Your low protein may cause secondary issues that might require even other types of doctors.

It’s for this reason that it’s extremely important to have a good primary care doctor who can, and will coordinate your care with all these specializations.

I’ll soon post some suggestions for primary care doctor’s that may come in handy for you, the patient.

I gratefully accept corrections and/or suggestions for this blog. Any input can be left in the form of a comment, or by signing my guestbook.