[ClaudetteParticipant]

Hi All My husband's paraproteins never went higher than the mid 30s. A friend had paraproteins in the 60s but his disease was/is much milder than my husband's. As others have said, paraproteins are only a part of the disease and is why we cannot compare individuals – as in everything else we are all different. The haemotologist can give the best information. Always go in with a list of questions and write down the answers. Memory often fails over the vital details.
Regards
Claudette

[jmsmythParticipant]

Hi Claudette

You are right it is a very individual disease. Frank trusts his consultant – what she says is law. I suppose that is a good thing to have trust. I can never remember what she tells us so I take a recorder in with me and the listen again when I am relaxed and write down what I need to ask at next visit.

I hope things go well with you and your husband.
Love Jean

[ClaudetteParticipant]

Hi Jean
Thank you for your good wishes. Sadly my husband died a year ago after 10 years illness but I learnt so much in those 10 years.

Regards
Claudette

[jmsmythParticipant]

Claudette

I am so very sorry for being so insensitive. I send my sincere apologies fort terrible mistake.
Love jean x

[ClaudetteParticipant]

Please don't worry Jean, you were not to know. Regards Claudette

[AmelieParticipant]

Thanks again to all of you for your very informative answers.

Somewhere else I read about someone who had bone damages with a paraprotein level of 3 and here I am reading about patients living well with very high levels. So it must mean that paraprotein alone says very little about the condition.

John had severe bone damage with a paraprotein level of 37 – does it mean that he will also have bone damage when it reaches that level again? Or could he be lucky to live well with a high level.

Sorry for keeping asking all these questions! 😀

[Author]

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