A diagnosis of Localised amyloidosis – My story

//A diagnosis of Localised amyloidosis – My story

A diagnosis of Localised amyloidosis – My story

2021-11-19T10:10:47+00:00November 14th, 2021|Patient Experiences|

My journey with Amyloidosis began in November 2018 when I discovered an alarming protrusion on the surface of my right breast. That day my doctor immediately arranged for me to present at the Wesley Hospital’s Diagnostic Breast Clinic for investigation.

The tests carried out at that Clinic included an Ultrasound and a Mammogram and a biopsy of the worrying area on my right breast.  Six days later my stitches were removed from the site of the biopsy. In early December the Pathology results from the Wesley were passed to my GP who advised me that the result given was consistent with nodular localised amyloidosis.

The Pathologist also recommended further investigation to exclude systemic disease. My GP then arranged an appointment for me to see Prof. Mollee. at the Qld Amyloidosis Centre at the Princess Alexandria (PA) Hospital in Brisbane, in late January 2019.

On this visit Prof Mollee first discussed very broadly Amyloidosis disease and then my symptoms in particular. He gave me a probable diagnosis of my type of amyloidosis being of the Localised type, but considered it wise for me to have a range of tests to eliminate other forms of the disease.  I left this appointment overwhelmed with information that I found difficult to comprehend and I felt very confused. This was no fault of Prof. Mollee who was patient with my questions.

From this appointment, I had an MRI on my heart as well as blood, urine and other tests and in a follow up visit to the clinic in March 2019, Prof. Mollee confirmed that I did indeed have Localised Amyloidosis, which eased my mind considerably.

Phillipa

What I know about my Localised Amyloidosis is that it is indeed “localised’ to only one site of the body. I am told, it has a very low probability of spreading and I will only have to be reviewed every 12 months.  I feel very fortunate that I do not have other forms of this group of extremely complicated diseases.

As I mentioned above, although my outcome is very positive, there were times during the tests when I became confused and frightened.  I have come to understand how important it is to learn as much as possible about your own type of amyloidosis.  I recommend reading the booklet ‘Understanding Amyloidosis – A Guide for Patients and Families.’ for a good overview of amyloidosis.

It is good to also seek support from someone who knows about amyloidosis.  Over the last three years I have welcomed the support of the AAN patient and family advocate, Pat Neely, who has never hesitated to make herself available to discuss my diagnosis in layman’s terms and I am grateful to her, for putting my mind at rest.

Philippa Goodwin

For more information about this patient’s experience you can send them an e-mail using the form below.

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