I was diagnosed with MGUS 7 years ago and with myeloma 3 months ago. I had had difficulty walking, had neck and back pain, hence the tests that showed MGUS. I do believe now that the connection between anemia, "wear and tear", osteoporosis, and MGUS should be much more relevant to a myeloma diagnosis. MGUS is supposed to be asymptomatic. My doctor wasn't a greater believer of slumbering myeloma, now I know that that's what I have had for years without a full diagnosis at the time. I could not continue working, my job was physically and mentally demanding, but was too young for full pension. Had I had a slumbering diagnosis, I would have received added pension. Still bugs me.
Am heading to cycle 5 and will be meeting to discuss a stem cell transplant probably in April. I hope I can keep well for this.
I don't feel too sorry for myself, but am very angry at not been taken very seriously by some doctors over the last 12 years, when all this began to kick in. It made life so difficult.
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Re: MGUS diagnosis 7 years ago, multiple myeloma now
Welcome to the forum. It's unfortunate you have to be here. Have you seen a multiple myeloma specialist yet (rather than just a regular hematologist / oncologist)?
Like you, my dad was also angry about in the lack of progress in determining what was causing his back pain, until the day he went from going to have an MRI in the morning to trauma centre in the evening.
Like you, my dad was also angry about in the lack of progress in determining what was causing his back pain, until the day he went from going to have an MRI in the morning to trauma centre in the evening.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: MGUS diagnosis 7 years ago, multiple myeloma now
Hello Marian:
I am sorry that you need to be here, but I welcome you to the forum. I hope you will find some benefit and comfort from the many other people on the forum who are in a very similar situation to yourself. As Little Monkey has said, certainly, at this point, are you comfortable that you have hooked up with a top rate myeloma specialist? If not, I would respectfully suggest that probably should be the first order of business next up. Good luck to you.
I am sorry that you need to be here, but I welcome you to the forum. I hope you will find some benefit and comfort from the many other people on the forum who are in a very similar situation to yourself. As Little Monkey has said, certainly, at this point, are you comfortable that you have hooked up with a top rate myeloma specialist? If not, I would respectfully suggest that probably should be the first order of business next up. Good luck to you.
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JPC - Name: JPC
Re: MGUS diagnosis 7 years ago, multiple myeloma now
To add to what JPC said, members of this forum are able to suggest myeloma specialists in various places in the world. There are members here from the USA, Canada, Western Europe, Australia, New Zealand, and beyond.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
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