How I Found Out I Had Amyloidosis

One of the reasons why amyloidosis is so devastating is that there are usually no overt symptoms until the disease has progressed into an organ. Even then, when you go to a doctor it is the last thing that they check for, since it is so rare. Add to the fact that it hits older people will weakened organs, and you can see why the prognosis for amyloidosis is usually not good.

However, I think your body knows on a subconscious level it is not well, and will let you know it in mysterious ways.

In September 2004, I started feeling a little 'blah' and not myself. I would get tired and stress out easily. I didn't worry too much, as I blamed it on stresses present in my life during that time.

In mid-October 2004, I developed a severe case of what I know now to be heartburn. I'd never had heartburn before, so I has assumed that it was just a stomach ache. I started getting worried after a week or so after the pain was not going away. I had spent $1500 on a project management class that I fought to get though (I actually left halfway through the second day because the pain was so bad). After a few weeks of this my doctor suggested some over-the-counter heartburn medication, which did the job after a few days. Afterwards, I experienced some aching in my kidneys, which lasted over a week.

In November 2004, I experienced a relapse in the heartburn. I took some Prilosec and Zantac, which cleared the symptoms in a week. Afterwards, I got the same aching in the kidneys, which went away.

For the rest of the year, I never truly felt well. I would fatigue very easy, and had little energy. I went to the doctor in January to check on my thyroid levels. I had it checked about 10 years ago, when they discovered that I was marginally hyperthyroid, but not severe to perform any treatment. Now I suspected it was causing the issues I was having.

My doctor checked me out, but came to the same conclusion made 10 years ago: that I may be hyperthyroid, but not enough to cause the issues I might be having. That seemed strange to me, so I went and got a second opinion from an endicrinologist.

The endicrinologist concurred with my doctor, that there wasn't anything there that should cause the malaise. However, he put me on 5mg of methamazole in case I was sensitive to the slightly low T4 levels. I started medication in February.

In late February 2005 I started getting muscle cramps in my legs when I walked. It was a little strange, but I figured that it was a sign that I was sitting on my ass for too long and I needed to get more exercise.

The cramping continued throughout the rest of February and March. I just lived with it. There were no other symptoms that indicated that anything serious was wrong. However, I knew that I wasn't feeling right.

In early April, I had gone on a business trip to New York. After returning to my hotel one evening, I had discovered that my feet were very swollen. I was a little scared - maybe the thyroid medication was causing the swelling?

When I returned from my business trip, I called my endicrinologist and told him what was happening to me. He didn't believe that the medication would cause this issue, but he told me to stop taking it.

On April 12th, I saw my doctor, who saw the swelling and had some lab work done. It was discovered that I had proteinuria (excess protein leaking from my kidneys in the urine). At this time, the doctor suggested I go for more tests, as it may have been a kidney infection.

At this time, the edema (swelling) was getting worse. It had moved into my ankles and lower legs, which got me scared. On April 14th, I went to the emergency room at Melrose-Wakefield Hospital, which was literally down the street from where I live. A doctor there took a look at my recent labs, and consulted with a nephrologist (kidney specialist), who determined that I should see a specialist as soon as possible. None of their initial referrals would be able to see me for weeks, so I went back to my doctor, who referred me to a nephrologist in the network.

On April 22, I met my nephrologist, who conducted some more blood tests and checked for kidney stones. The results were inconclusive, but there was no doubt I had nephrotic syndrome. As a result, my nephrologist said that a kidney biopsy would be the way to be sure what was affecting my kidney.

On May 5th, I had the kidney biopsy, with no complications. At the time, the doctor thought it to be a kidney infection. As a matter of fact, on the day of the biopsy, the nephrologist performed one more blood test to verify that the protein levels were stabilizing, so that I would not need the biopsy!

On May 16th, I learned that amyloid deposits were found in my right kidney. The kidney was functioning normally, producing normal levels of creatinine, but deposits had found themselves in the glomerulus, causing the kidney to lose the ability to filter proteins from the blood. This was causing the edema.

At this point my doctor told me how serious amyloidosis was. It was scary to learn that this was not an issue with the kidneys, but my bone marrow, and there was nothing he could do for me. He gave me 10mg of Lasix to combat the edema, and referred me the Boston University School of Medicine, which is the leading facility in the world for treating this disease.

I did not take the news very well. I became extremely anxious and stressed out on this finding. Just two months ago, I was healthy short of a little muscle cramping, and now I am very sick with a bone-marrow disorder? Needless to say, I started to deteriorate mainly because of the stress. I lost my appetite, started to have anxiety attacks, and experienced issues with my entire gastrointestinal tract. My edema continued to grow, and my Lasix medication was increased to 40mg. I also was given 1mg of Adavan for anxiety. I had stress-related issues throughout the course of May.

On June 6, I began a three-day evaluation over the at Boston University Amyloid Treatment Center. I am fortunate to be a Boston resident, and did not have to make excessive travel arrangements -- the hospital is less than 15 miles from where I live. However, my mother came down for support, so we stayed at the Best Western in Roxbury due to its close location to the facility.

During the three days I had a number of tests including blood tests, echocardiograms, a bone marrow biopsy (not fun), chest x-rays, lung tests and more. I also had to provide a 24-hour urine and stool samples.