My Story
Written by giusi, published 4 months ago.
Dear friends on this site, I want to tell you my long history with Waldenström’s disease so you can understand that sometimes symptoms are not understood or properly evaluated by doctors.
It was about 2002 and I was working as a volunteer at a Caritas centre in the town where I live. I was doing computer work and suddenly began losing my sight. I would not be able to see the monitor for a few minutes and then slowly my vision came back, very blurred at first. Then I had small bleeds in my eyes, but my doctor told me these were due to "chills", it being winter at the time.
These were the first symptoms but were followed by a sudden loss of memory. I had made a trip by road, but after a while I did not know where I was or what had happened to me. So they started to think I was using tranquillizers or sedatives for depression, which went on for months, but I maintained something very different. Meanwhile the lymph nodes of my neck had become abnormal – I felt like one large lymph node! I was hospitalised twice after losing consciousness and since they did not understand what was going on they carried out gastric lavage thinking that I had overdosed on sedatives.
During one of the hospitalizations the physician in charge ran an electrophoresis test on me that showed a crazily high level, off the scale. I was given 18 months to live and there was a rush to perform a biopsy. You can understand the difference between being depressed and just not being listened to . . . I finished in a neurological clinic! It was a terrible terrible time, with a separation in progress in the middle of which my ex-husband took advantage of the confusion to slip away. I went to a psychologist and it was finally established that I had never used drugs either to calm me down or to kill myself.
But I had to fight. Among other things, after diagnosis the foundation wrote to me that often this disease presents as, or can progress sharply to, a state of deep emotional distress, like "SEPARATION or MOURNING”. I have travelled all over Italy and at the San Raffaele I found doctors who cared for me and still care. I know that if I get tired or very stressed the disease becomes more severe.
I ask all who are reading this whether there are any of you who have had the same symptoms as me or at least some of them. However anaemia, paraprotein and beta-2-microglobulin are the warning signs always to keep in mind. Greetings to you all and thanks.
Written by giusi, published 4 months ago.
3 comments for «My Story»
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Thank you for your story, Giusi! I am getting this translated into English so that it can be more widely read. Thank you for sharing your experiences here.
Best wishes,
Phil
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Phil Manning, English language moderator
Yes, thank you for sharing. These symptoms of yours don't seem to be typical in WM. Is that why the diagnosis was an issue do you think?
Confusion and vision problems can be an issue in WM, particularly associated with hyperviscosity, which is not an issue for all WM patients.
There is a very good article on hyperviscosity (in English only at the moment, I am afraid!) here:
www.wmuk.org.uk/documents/HyperviscositySy...
Best wishes,
Phil