- Waldenstrom Macroglobulinemia
- Interviews
Loretta's interview
How did all start?
In 2005 diagnosed with IgM MGUS after incidental blood tests. IgM rose from 3mg/L initially to 16mg/L this year. I have a lot of neuropathy and have never been sure if that was from all my back issues. I had more back surgery in February and my surgeon said my bones were soft. This is why my haem-onc ordered full body ct scan and BMB and the biopsy came back positive for LPL.
Do you already have a diagnosis? How long did it take you to get it?
Two weeks after my BMB
For what medical specialties have you been treated? What has been the most useful specialty for your?
I saw a neurologist last year who ordered a huge battery of tests including nerve conduction. The paraprotein was present of course but the nerve conduction tests were not conclusive for small fibre nerve issues. Nothing else rang any alarm bells. And I see my haem-onc previously 4 monthly but now 3 monthly.
What has been the most useful thing for you so far?
Joining some Facebook groups relevant to IgM and WM. They are an amazing source of information, clarity and friendship.
What have been your biggest difficulties?
Understanding the BMB results.
Remembering enough about what I have read on the disease to explain it to my family.
How has your social and family environment reacted? Have your social or family relationships changed?
I think I may have down-played the issue and hence my family is doing ok. I know they will each in their turn ask me for more details as they get used to the idea.
Nothing has changed in my relationships. I only learned
What things have you stopped doing?
I only got my diagnosis during this last week so it's 'business as usual' at the moment.
What do you think about the future?
I am hopeful of the future because I feel that knowing about it at such an early stage and regular doctor visits should keep us on the ball and ready for whatever may come.
So far, which years have been the best years in your life? What have you done during them?
To be honest I think my late teen years were my best because that was before I hurt my back and I was able to physically do whatever I wanted. I have been restricted ever since. In some respects that has prepared me to be accepting of any disability I may have in the future.
What would you like to do if you didn’t have your condition?
I would love to go travelling with my husband. I haven't physically been fit enough for that. I had hoped by the time all my children had flown the coop I would be in a better condition and position .
If you had to describe your life in a sentence, what would it be?
Fortunate in so many ways with a supportive husband and children and friends to laugh with.
Finally, what advice would you give to a person in a similar situation?
I would recommend they read everything possible on their disease. Ask many questions and have a supportive group of people with whom to laugh and cry.
