Diagnoses of PBC not making sense anymore
I was diagnosed with PBC in Dec 2017. I started feeling very fatigued with joint pain in my wrists, fingers, elbows, hips and knees. My GP sent me to a Rheumatologist who repeated the nlood tests and tested more.
My RNP number was 6.5 a month ago and is now 6.7. The dr said I don’t have enough of the symptoms for him to make a diagnosis of MTCD. He wants me to redo the blood work I’m 4 months. My husband doesn’t think that’s an answer. Any suggestions?
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@usafretired15 You present a very interesting picture to me; a lot like mine, with a couple significant exceptions. I am 30 or so years older, and for significant reasons, I have never been pregnant. … Just Male. But I had six sisters and one brother, and almost every element you pose, at least one of us has had or does have it, plus a lot more elements in autoimmune light chain dyscrasia of some sort. Lupus, Crohn's, nickel-sized rashes (Macular Skin) with furrows, bleeding and with infection, Arthritis, Carpal tunnel, tarsal tunnel, positive ANA, LECT2, Apolipoprotein, Gelsolin, AL, etc., etc. I suggest you ask your doctor to start looking at liver and kidney protein issues such as Amyloidosis, Have the doc get in touch with Mayo Amyloidosis Clinic, and watch Dr. Martha Grogan's videos on diagnosing Amyloidosis. If the doctor does, I know a few hundred other folks who who like to have that doc's name. My first clue was that my organs started going bad. Heart, lungs, kidneys, liver, spleen, thyroid, brain, spine. Even my teeth started cracking and breaking off. One doctor group diagnosed it in 20 minutes. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl There is a list of Dr Grogan's suggest tests in there.
@usafretired15 One thing I forgot to mention. And then the macular, skin looks a lot like melanoma, But it looks like the hashtag sign, or a plowed field, #####, with the furrows at 30/60 degree angles. Melanoma typically is not hashtag.
It sounds like you have a lot of doctors looking out for you:-) Are they 'talking' to each other or comparing their findings?
I don't believe they have communicated with each other, the GP said this isn't my area and sent me back to my gastro who is treating the PBC, who then said the liver is his specialty so I should go to a rheumatologist. He redid the blood work to verify that the RNP number was right on the first blood test, and ordered other tests. He said my blood work looks good except for the 6.7 RNP number. I also had elevated uric acid. So he verified the RNP is indeed elevated, and then said I don't know why, lets wait 4 months and retest. He did order another blood test for muscle enzymes. We should have results next week. I'm not sure what that will show.
I can understand how confusing this must be for you as well as your group of specialists. Many of our members keep track of their lab results, x-rays, MRIs and other diagnostic results. They keep these in a binder and take it with them to each appointment. Nowadays, with electronic medical records, your doctors may be communicating with each other in that manner, but it still might be a good idea for you to keep track of all of your test results as well. You might be able to pick up changes that your doctors might miss in their hurried practices.
That’s a good idea. I’ll start a binder today!
Theresa good advice Ive kept the ultra 2nd folder mine since 1996
No, I have not. I will do some research. I thank you for your input.
Karen, I appreciate you saying so. Either that or a hypochondriac! Lol
After I sent this I realized that I had just assumed you were a woman! Don’t know why!