MGUS questions

Hi has anyone had issues with vision and floaters in eye since been diagnosed with MGUS?

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Hi @Maxwe3s that is an interesting thought.I have had floaters over the past few years but don’t think they were connected it can be quite common.I always had eyes checked after the experience and nothing found, suggested it was a kind of migraine !!However my eyesight has deteriorated long/short vision had a few tests last year took a while to sort.Before I was diagnosed with MGUS I developed double vision R eye so have a prism to correct that .I’m wondering how long you have been diagnosed its hard not to attribute any new changes to wondering if it’s MGUS .Hope that helps but if you’re having frequent floaters best to go to GP /Optician for reassurance .Good luck .
Bannanacake

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Hi there I was diagnosed 2 years ago with MGUS but my vision is getting worse in my right eye and now I have floaters… this started in last year … I’ve also been diagnosed with reactive Hypo Glycemia … always tired no energy at all , it’s strange isn’t it as I feel worried and yet I know that other people on here have a lot worse problems than myself… so I am sorry if I sound over dramatic :weary::see_no_evil: xx

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Hi there@Maxwe3s,no worries it’s not surprising to get anxious about new symptoms but sounds to me the floaters and vision changes are related to the Hypoglycaemia which I presume your being monitored for. Isn’t it good that the forum is here to support us along the way.
I hope your MGUS is behaving itself, I was diagnosed with MGUS in September so I’m on “watch and wait” just an…other thing .Hope you have a good day .
Bannanacake

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I know this Forum is so good for advice, with your MGUS what did they advise you… I’m same as you watch and wait … x

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Hi Maxwee3s,I think the forum is good for support and help with understanding of each person’s difficulties. I haven’t had" advice "from the forum just understanding of what it’s like to be on watch and wait and the emotional turmoil and the main thing that seems to come through is "look after yourself, "also if you have any ?to call the BCUK helpline to speak to a Nurse .I find listening to the meditation videos on the BCUK website useful ,it settles unwanted thoughts down .I also have hobbies, daily walks .Hope you’re able to find respite in-between the watch and wait, thank goodness we’re on it .
Bannanacake

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Sorry for the late response been busy with work and my family… I agree this forum is so supportive, hope your doing ok banana cake ? I’ve been so tired lately aching constantly in my hips. I also have had a lump in the crease of my elbow … going to make an appointment get it checked again … anyone else experienced lumps ? X

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Hello@Maxwee3s I dont know where the time goes I was recently looking through MGUS related "stuff"and your post so glad to hear how you are doing and good you are going to get your elbow checked and can also ask about the hip pain ?

I am sorry to hear these things are causing you bother.Do you get your bloods checked regularly to keep an eye on the MGUS?

I am coming up to my blood tests in March but Im doing ok thanks and my Dr is good at checking me out .@Erica did a recent post on checking for changes in glands spleen size and being aware of changes which is a good thing to do @Gemma is holding a zoom call today on the subject of "watch and wait "I am looking forward to the questions and answers.
You sound busy with your work and family I remember those days but Im still busy now doing one thing or an …other ,and main thing is to find five minutes for yourself to relax a bit.
I hope all goes well with your appointment
Bannanacake

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Hi @Maxwe3s I reckon your work and family are quite enough for you are the moment and obviously they are your priorities, yes, you must be exhausted and tired…
Good idea to check out all aches, pains, lumps and bumps so you medical team know what is going on and for your peace of mind.
Please let us know how you get on.

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Hi there I will let you know how I get on at the doctors , luckily I have a really good doctor so that’s good… xx

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Hi there yes I have regular bloods done every 3 to 6 months . My last result my levels of protein had increased slight but nothing to warrant an urgency 4.8 … but I know when my tests are due I get stressed and anxious… hope all goes well for your bloods xxx

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HIMaxwee@3s,thats the thing watching for the rise in paraproteins the good thing about regular tests is you can see the pattern ,my last 2 each rose the same 2.40,was yours a rise of 4.8 or is that your level? .I know if the level gets to 20 its is more likely to progress. Thanks for your good wishes im so busy with other stuff just now its not occupying me to much (so I say !)Im glad you have good support ftom your Dr ,me too and it helps. There is a good thread from @Gemma questions and answers just now.
I hope you get reassurance for your tiredness, pain and elbow lump.
All the best
Bannanacake

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Hi Bannanacake yeah they risen to 4.8 on my latest bloods … see what happens at the doctors, even some reassuring will do me good xx you take care to :slightly_smiling_face:

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Hi @Maxwe3s yep, reassuring is so good, please let us know how you get on at your doctors, look after yourself and be kind to yourself

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Hi@Maxwe3s,yes I hope you do get some reassurance from your appointment,it sounds as though you also have a good Dr,mine has guidance from the Haematologist Consultant so there is a plan and that is reassuring.
Take care
Bannanacake

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