[hoffgradParticipant]

Mulberry

One of the reasons I am slightly reluctant to join ‘any’ forums online… on any topic at all… is due to some people being assumptive. Your message reads as if I haven’t a clue about MGUS or in fact on how to navigate my way though the system. I am a very intelligent woman and a trained therapist so I do know how to manage myself. I also am extremely clued up on MGUS being a precursor to many other conditions.

Thank you.

[hoffgradParticipant]

Hi Matt

Thank you so much for this.

I wonder if I should be on this forum as I do not have Myeloma (that I know about), but the whole MGUS thing is something I feel I need to keep on top of. I have a good GP but she is not a specialist and so whilst she has referred me to a haematologist in my area, I am waiting forever for an appointment and… not being negative, I don’t hold out much hope. Warwick hospital, is understaffed and struggling. Specialists who visit there for outpatients appointments, are overstretched. It’s at times like this I wish I could afford private but sadly that is not at all possible.

I have read about Amyloidosis… I’m sorry you have this… but don’t think I have it. To be honest though, this is an area of health that even an intelligent lay person like me, finds totally confusing. But I feel that my diagnosis of CFS/fibromyalgia (from 2014) is really something that is related to my later diagnosis of MGUS (2018). It just doesn’t make sense to me that I am so exhausted and in so much pain at times when other blood tests have me as ‘normal’ and within range.

I wonder if it would be possible to be referred to the hospital you mention, when I live in Stratford Upon Avon. It’s so frustrating. The whole healthcare system seems to be a postcode lottery.

Can I ask you how you started your MGUS/amyloidosis journey? How did you come to be diagnosed/tested? It’s not a routine test and it was just by chance for me that I had seen an immunologist (a private one off consultation) that he wrote to my GP to ask her to test my immunologlobulins. I am definitely going to take a look online at the hospital you mention but you know what it’s like, I don’t want to be pushy if I am still within range and stable. Whatever stable is, with this condition.

[hoffgradParticipant]

I meant to ask you Bronwen, are you in the UK or in the US? Reason for asking is that you mention a Myeloma Society, and upon doing a search, I only came up with one, which is an American site

Thanks.

[hoffgradParticipant]

Bronwen

Many thanks for your post and, I am sorry you have been diagnosed with MM.

I am pretty up to date with all that you suggested, thank you. I am the sort of woman who would ask for these things anyway and yes, aware that my GP is not experienced enough with this. A specialist I spoke with recently, informed me that it is extremely commonplace for people over 50 to have MGUS, but for it never to develop into Myeloma or indeed to have any symptoms. Although yes, am also aware that unfortunately there are people like yourself, whereby there has been a development.

Best wishes to you and thank you again.

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