Oncology (General Cancer)/Macroglobulinemia

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QUESTION: Dr. Higby,
Thank you so much for your time.  I am a 45 yr/f.  I do have a history of multiple health issues.  I will try to be concise as it relates to the subject.  I have had a pacemaker for several yrs, multiple arrythmias, TIAs, coumadin therapy several years.  Multiple blockages in upper venous area, subclavian, IVJ, and other chest wall veins, superior vena cava syndrome.  I had a neck dissection a couple years ago for what was thought to be a branchial cleft cyst.   
I have been seeing a neurologist for about a year a half for issues related.  Dizziness, double and blurred vision, on/off profound weakness usually left side.  I have tremors, bluish/ purple tinge of hands, feet (worse), lips and nose now is starting to look a bit purple.
Recently, I went to a new coumadin clinic where they went through all meds and diagnoses etc.  The nurse was reading the list on the computer and said macroglobulinemia.  I never heard that word before.  They hooked me up to access my patient portal and I saw that it was diagnosed by my Neurologist a little over a year ago.  I was never told and I'm confused.
Question:
Do my symptoms sound like this is a possible diagnosis?
What is the prognosis for this disease?
Is there a logical reason a Dr wouldn't share this?

Thanks so much again!

ANSWER: Macroglobulinemia is a disorder in which the cells in your body which make certain kinds of antibodies get out of control, and make large amounts of "macroglobulin".  This can cause lots of problems, including many of those which you've mentioned.  The macroglobulin increases the viscosity of the blood so that it is harder to move around.  (Honey is very viscous; water isn't).  Mostofr the time it's easy to treat.  You can do anything from removing plasma to using quite tolerable chemotherapy.  Properly treated, it may never bother you again, although sometimes it "escapes" the control of treatment.  An hematologist or oncologist would be able to confirm the diagnosis and make good treatment recommendations.
Do you have the disease?  I don't know -- your neurologist may have been simply listing possibilities.  But since it is very treatable and since some or most of your symptoms could be caused by it, I'd definitely get going on this.  
I don't know why a doctor wouldn't share this.  A lot of times if you diagnose something outside your own field of specialization you convey that information to the referring physician.  A neurologist would not be equipped to care for this disease or even confirm the diagnosis, and might have wanted your referring doctor to follow up.  Please let me know what happens!

---------- FOLLOW-UP ----------

QUESTION: Dr. Higby,
You answered everything I asked.  I am due to have surgery for a neurogenic bladder next week, due to an unknown  neuro disease.  MRI has not been possible for many years.  I have had countless bizarre blood results high liver enzymes, electrolyte abnormalities, obviously venograms.  And with that what I listed above.  My daughter was diagnosed with JRA at 2 yrs and this yr at 16, autoimmune hepatitis, with severe liver damage, and now epilepsy.  I' m mostly trying to connect some dots.  I am trying to stay on top of her issues, as she has had such a rough time (still high honors, track star;) but I feel I can't put my stuff in a box anymore and I have to try to connect some dots.  
My new questions are:
What should I say to my Neurologist when I see her this  Monday, without putting  her on the spot about the diagnosis of macroglobulinemia.
Any questions I should ask?
If she says no, it was just mistake or question, should I negate seeing a Hematologist/Oncologist?  
She recommend I see a Rheumatologist because my RF was a bit elevated, but i just didnt want to add a new specialist to evaluate a small rf.  I was and am driving my daughter back and forth from Children's Hospital while working.  It has to be important for me to be going to a new dr.
Thanks again.  You have been very helpful and I thank you ahead of time for your answer.

Answer
If you have macroglobulinemia, a lot of tests might be a little abnormal, and it wouldn't be a surprise to have an rf elevated.  As for your neurologist, if she says you have macroglobulinemia, I'd consult a hematologist or oncologist;  if it's just a mistake, then I wouldn't.  The other thing, however, is that there may be a connection between your disease and your daughter's. Your situation and hers sound bizarre enough to consider going to a diagnostic clinic in a University hospital or some place like the Cleveland or Mayo Clinic.  There you would be reviewed by several specialists all working together, and they might come up with something your doctor(s) haven't thought of.  Hope this all helps.  

Oncology (General Cancer)

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Donald Higby, M.D.

Expertise

I can answer almost all questions related to the treatment and natural course of most kinds of cancer, especially cancers of prostate, colon, lung and breast.

Experience

I have been a practicing medical oncologist for 36 years, and have been chief of service at a major medical center for 25 years. I've also done research in cancer treatments.

Organizations
American Society of Clinical Oncology

Publications
New England Journal of Medicine American Journal of Medicine Journal of the American Society of Clinical Oncology Hematology Transfusion Medicine

Education/Credentials
MD, Stanford University Internal Medicine residency, St. Louis University School of Medicine, St. Louis, MO Medical Oncology Fellowship, Roswell Park Cancer Institute, Buffalo, NY

Awards and Honors
America's Best Physicians, last 14 years

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