3 years ago I started to get many symptoms. These are: night sweats, heart issues, small fiber neuropathy, feeling of big tounge, dry mouth, MGUS, igm, foamy urin, but no protein found, very tired and edema in my legs. I have also calsium deposits in lungs, liver and spleen.
I am not sure how to move on to get the right diagnose...
I have had fat pad, rectal, lips and BMB - all came back negative for amyloidosis.
No I am waiting for a sural nerve biopsy to check for amyloid.
I worry a lot - and have no experts for amyloidosis around here in Norway.
Last year I went to NAC in London. I had a SAPscan which did not show any amyloidosis.
It is difficult to know how to push to get the right diagnose....
I am sorry to read that you are having such difficulty getting a diagnosis--that must be very frustrating! I have light chain amyloidosis and once I found the right physician, the diagnosis came easily with a fat pad biopsy of my abdomen. From there, it was on to treatment which has gone well. But, I long for a cure for this disease and hope that I can stay healthy enough until one is found.
It sounds as if you have had all of the tests for amyloidosis--what are they saying that you might have? I would hope that they could find out something from all of the tests you have had.
In my case before diagnosis, I instinctively knew that something was going on with my body. My energy level slowly but surely went down. I eventually began having odd breathing symptoms, a CT scan showed pleural effusions, and in the search for what was going on, a simple urine dip test then a 24 hour urine analysis, showed I was dumping lots of protein in my urine (which was foamy) aka nephrotic syndrome. This led to a CT guided kidney biopsy, which diagnosed the amyloidosis. Getting the diagnosis, while devastating, answered a lot of questions about what the heck was going on with me. I truly hope you get some answers. The best course is to be your own strongest advocate for testing, and don't let the docs just write it off.
I am sorry to read that you are having such difficulty getting a diagnosis--that must be very frustrating! I have light chain amyloidosis and once I found the right physician, the diagnosis came easily with a fat pad biopsy of my abdomen. From there, it was on to treatment which has gone well. But, I long for a cure for this disease and hope that I can stay healthy enough until one is found.
It sounds as if you have had all of the tests for amyloidosis--what are they saying that you might have? I would hope that they could find out something from all of the tests you have had.
Feel free to ask me any questions. Take care.
Thank you so much for the answer! Is it possible to Write private Message to members in here?
Thank you so much for the answer. I also know that somethiing is going on With my body. But they havent found protein in the urine, even if I also have foamy urine.
Next thuing for me will be nerve biopsy...
SheSurvives said:
In my case before diagnosis, I instinctively knew that something was going on with my body. My energy level slowly but surely went down. I eventually began having odd breathing symptoms, a CT scan showed pleural effusions, and in the search for what was going on, a simple urine dip test then a 24 hour urine analysis, showed I was dumping lots of protein in my urine (which was foamy) aka nephrotic syndrome. This led to a CT guided kidney biopsy, which diagnosed the amyloidosis. Getting the diagnosis, while devastating, answered a lot of questions about what the heck was going on with me. I truly hope you get some answers. The best course is to be your own strongest advocate for testing, and don't let the docs just write it off.
I know how frustrating it can be to try and get a diagnosis. The NAC has some of the best amyloidosis doctors in the world and their SAP scan is very good at detecting amyloid in the body. However, I do know that it will not show amyloid deposits in the soft tissues. Try contacting Dr. Gunnar Husby at the UiO to see if he can help you.