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Does anyone have any info on MGUS treatment or risk of progression?

Posted by nick86 @nick86, Sep 27, 2023

Hi all,
I'm Nick, I'm 37 from the UK. I've just been diagnosed with MGUS. My M-spike is 1.3g d/l and everything else is normal. I had a bone marrow biopsy which showed less than ten percent and my mri scan was okay. I've been through a whole host of emotions. First, complete relief and felt as though I dodged a bullet. Now crippling anxiety has set in as im feeling like my feared diagnosis has just been moved down the line. This has also come with a huge helping of guilt as I know that so many people have things far far worse than I could imagine. I'm not the watch and wait type so I've been relentlessly researching to try and find an answer to this "problem". Does anyone have any insight into progression risk and potential ways to lower the m protein naturally? Just looking for some peace of mind that is proving very elusive.
I'm sending positive thoughts to all who read this and I really hope you're all doing okay.

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nick86 | @nick86 | Nov 12, 2023

Dear @mguspixi25, thank you so much for this. The fact that you have spent your own time to do this research on my behalf is incredibly kind. I think that there could well be something up with my immune system and I will have a look at the links you've posted. I've never seen an immunologist but it could be a good avenue to go down. I have worked in schools for the past 13 years or so and have been exposed to countless colds, flu, bugs etc plus of course covid which I've had three times fairly mildly. I have found over the last couple of years my immune system seems to be functioning better than it ever has. I've put this down to daily cold exposure (ice baths) which seems to have had a really positive impact. It's not for everyone but it seems to strengthen me from within and reduce inflammation. I'll do some research on the immune system and mgus and see what I come up with. Thank you again and have a great day.

REPLY
1 reply
mgrspixi25 | @mguspixi25 | Nov 12, 2023
In reply to @nick86 "Dear @mguspixi25, thank you so much for this. The fact that you have spent your own..." + (show)
@nick86

Dear @mguspixi25, thank you so much for this. The fact that you have spent your own time to do this research on my behalf is incredibly kind. I think that there could well be something up with my immune system and I will have a look at the links you've posted. I've never seen an immunologist but it could be a good avenue to go down. I have worked in schools for the past 13 years or so and have been exposed to countless colds, flu, bugs etc plus of course covid which I've had three times fairly mildly. I have found over the last couple of years my immune system seems to be functioning better than it ever has. I've put this down to daily cold exposure (ice baths) which seems to have had a really positive impact. It's not for everyone but it seems to strengthen me from within and reduce inflammation. I'll do some research on the immune system and mgus and see what I come up with. Thank you again and have a great day.

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No worries at all @nick86, it was no trouble at all 🙂
I hope things go well with the immunologist, and they dig a little deeper for you.
It’s very interesting regarding daily ice baths, as cryotherapy is used in other immune disorders to control symptoms and address immune function. I’m very glad it’s helping you.
Before I started losing feeling in my lower arms and legs, I was an avid motorcyclist, and would ride rain, hail, snow or shine, and I did notice a marked improvement in immune function during winter when body temp would drop due to very low ambient temp combined with wind chill at speed (ice would form on the bike and on my leathers at motorway speeds, riding at night). I used to have cold water showers to imitate the same response, however I had to stop because the change in body temp was affecting brain function (I have chronic brain inflammation on MRI and significant temperature changes cause me to sometimes faint if they’re too hot or cold).
I hope cryotherapy continues to work well for you into the future 🌺
And best of luck with the research.
I hope you get to enjoy the week ahead!

REPLY
1 reply
nick86 | @nick86 | Nov 13, 2023
In reply to @mguspixi25 "No worries at all @nick86, it was no trouble at all 🙂 I hope things go..." + (show)
@mguspixi25

No worries at all @nick86, it was no trouble at all 🙂
I hope things go well with the immunologist, and they dig a little deeper for you.
It’s very interesting regarding daily ice baths, as cryotherapy is used in other immune disorders to control symptoms and address immune function. I’m very glad it’s helping you.
Before I started losing feeling in my lower arms and legs, I was an avid motorcyclist, and would ride rain, hail, snow or shine, and I did notice a marked improvement in immune function during winter when body temp would drop due to very low ambient temp combined with wind chill at speed (ice would form on the bike and on my leathers at motorway speeds, riding at night). I used to have cold water showers to imitate the same response, however I had to stop because the change in body temp was affecting brain function (I have chronic brain inflammation on MRI and significant temperature changes cause me to sometimes faint if they’re too hot or cold).
I hope cryotherapy continues to work well for you into the future 🌺
And best of luck with the research.
I hope you get to enjoy the week ahead!

Jump to this post

I'm so sorry to hear of your troubles. It must be really difficult to not be able to do some of the things you used to enjoy. The cold baths have been so helpful. I'm very grateful that I started, no matter how uncomfortable they are at times. I will continue my research and raise this with the haemotologist that I'll be seeing in December. Finger's crossed that everything stays stable until then. Best wishes and have a great week.

REPLY
1 reply
mgrspixi25 | @mguspixi25 | Nov 13, 2023
In reply to @nick86 "I'm so sorry to hear of your troubles. It must be really difficult to not be..." + (show)
@nick86

I'm so sorry to hear of your troubles. It must be really difficult to not be able to do some of the things you used to enjoy. The cold baths have been so helpful. I'm very grateful that I started, no matter how uncomfortable they are at times. I will continue my research and raise this with the haemotologist that I'll be seeing in December. Finger's crossed that everything stays stable until then. Best wishes and have a great week.

Jump to this post

Thank you.
Yes, I think if cryotherapy is working, it’s worth it to continue. I was wondering what your haematologists’ opinion is..I’ve had conflicting preferences from various medics but I do notice the difference between being intermittently cold, and not.
All the best with your upcoming appointment in December - I hope it goes well for you.
I’ll be finding out the formal results from the latest BMB done last week, at the end of the month.
All the best to you too 🙂

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