1. < Blood Cancers & Disorders

Newly diagnosed with MGUS and so anxious

Posted by scared58 @scared58, Mar 10 4:38am

I am in the first few days of finding out I have MGUS obviously I have googled it and feel very anxious as I have had years of pain diagnosed with fibromyalgia. However, I have noticed I have been more drained pain constantly when walking the slightest walk feeling a drain on my body. I am anxious this could mean a quicker progression of the condition I am not overweight, eat healthily and used to be very fit and an avid gardener now I am finding everything an effort and mentally for a while I have felt like I am on the outside looking in on peoples lives as my health has hindered so much already.
At the moment I have just had the first appointment with a haematologist and more blood tests taken my iron levels were fine and my kidney function but the doctor paused on calcium levels so not sure
All I can think of is cancer and possible treatments and everything that is negative as much as I don’t mean to be this way
I am 58
I would appreciate any help to feel less scared

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scared58 | @scared58 | Mar 13 1:17pm
In reply to @emmiet "@scared58 Some of us have been on this journey for many years, so don't feel you're..." + (show)
@emmiet

@scared58 Some of us have been on this journey for many years, so don't feel you're behind.☺ Mine started in 2021. The lymphoma societies are great places to start.

Coincidentally, when I was first diagnosed, I leaned heavily upon the online resources from a UK organization called Lymphoma Action. I find their webinars and personal video stories comforting and informative. When I entered the "Watch and Wait" protocol last year, I viewed their video of a panel discussion of patients and doctors discussing what it's like. Again, it was pretty comforting.

Here's some info from Luekemia Action's About Page
"We are the UK's only charity dedicated to lymphoma, the fifth most common cancer. We've been providing trusted information and support for over 35 years, helping thousands of people affected by lymphoma.

Our mission is to make sure no one faces lymphoma alone."

There's another called Blood Cancer UK. Their site has a section dedicated to MGUS. (I'm sure there are more organizations, but it's a start.)
I just discovered them. It seems the UK societies collect more stories from patients, which I find reassuring.

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thank you that's really helpful I have made a note of the websites and will be checking them out asap

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emmiet | @emmiet | Mar 13 5:13pm

I'm always happy to share, @scared58.

If you're up for it, you may want to call them to find out what they offer. It might save you some time and get you the support you need sooner than later. Ultimately, you have to work within your comfort level and find that balance everyone's mentioned.

Please keep us updated about your journey.🥰

REPLY
emmiet | @emmiet | Mar 13 5:27pm
In reply to @kayabbott "ResearchGate is a good resource for peer-reviewed pubs on medical and other topics. It allows authors..." + (show)
@kayabbott

ResearchGate is a good resource for peer-reviewed pubs on medical and other topics. It allows authors to post papers that might otherwise not be available to a broader audience.

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@kayabbott Thanks. I've added ResearchGate to my resources list.

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