Amyloidosis Support Group

I believe I have AA or AL Amyloidosis and I need some advice! My GI doctor dismissed the idea yesterday. Please help!

I'll keep this as brief as possible.

I am a 28-year-old female. I have been struggling with strange symptoms for almost 2 years now. Due to the fact that my symptoms present too much of a challenge to most doctors, I have been forced to do my own research. My main symptoms (sudden onset two years ago) currently are:

Chronic abdominal pain, global but intensely focalized to lower right quadrant. Cant sneeze or lay flat without pain. Tender to touch.

Chronic intermittent low grade fevers (up to 100.5) with night sweats.

Nausea

Severe constipation with intermittent diarrhea.

New symptoms: fainting and intermittent drastic drops in blood pressure, high white count (>130000) and headaches on right side.

I've had laparascopy, historoscopy, and colonoscopy, all of which indicated evidence of severe 'adhesions' surrounding my colon, small intestine, and other abdominal organs. Everything was otherwise pathologically normal.

I found a manual visceral therapist who can break up these 'adhesions', making digestion and pain easier for me.

I'm concerned about the recent bouts with low blood pressure (90/45) and fainting. I'm dizzy often. My GI doctor thinks that the adhesions are constricting my nerves,causing a vagal response. I faint when i am sitting which is very concerning for driving.

My GI doctor thinks these rapidly recurring and spreading abdominal adhesions are endometriosis. I don't think so because I do not have periods (specialized birth control).

Please, please, please help! Does this sound like amyloidosis to anybody?

If there is a chance you have amyloidosis (very unlikely at your age) you should have the characteristic amyloid protein in a biopsy specimen of involved tissue (such as mouth, rectum, fat, kidney, heart, or liver). A needle aspiration biopsy of fat just under the skin of the belly (fat pad aspiration), originally developed at Boston University, offers a simple and less invasive method to diagnose systemic amyloidosis. Pathologists can see the protein in the biopsy specimen when it is coated with a special dye, called Congo red stain.

The presence of a monoclonal protein in the serum and urine of patients is a common finding and an important diagnostic feature. However, the underlying monoclonal gammopathies can be subtle and are undetectable in 5-20% of patients, depending upon the sensitivity of the electrophoretic method used. A serum free light chain test is always useful.

You should see your doctor again if you are worried.

Please pardon as am seriously sleepy and though your post is from January still felt the need to respond.

First regarding Amyloidosis... There are three centers for research and treatment. We chose Boston as they have the highest survival rate.

To diagnose, one would need a bone marrow biopsy. Not fun but a definitie diagnostic tool. This disease, although considered extremely rare; thus, often overlooked/not familiar with many physicians... those of us truly familiar/dealing with the disease believe it is more prevelant than believed because of issues noted above. Please consider Boston or one of the other three Amyloidosis Treatment & Research centers if not already done so.

BTW, there are definitely Amyloid patients your age.

As for Endometriosis... Definite possibility no matter where a lady is in time of life. As for myself, more than one GYN plus fertility specialist when I was much younger informed us with the degree to which I had it, it's something we'd have to keep an eye on for the remainder of my life. As unpleasant as Laparoscopies, etc. can be, I can tell you from our experience, we'd much rather this diagnosis than that of Amyloidosis.

Best of luck to all suspecting, newly and struggling with Amyloidosis diagnosis. It's a long, tough ride but it can be treated with a decent outcome if caught early enough. BTW, whatever you do, DON'T read all those awful horror stories about Amy dating back years. Research and treatment of this disease has seen tremendous progress!!! My spouse began having symptoms in 2006, was diagnosed and treated in 2007 and is doing reasonably well considering the many cancers diagnosed and still dealing with ... from 2007 continueing thru present.

Gentle hugs