Thankyou i will post more when i get any results good or not so .
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Hi @Erica@Nichola75and @Karin just to say my appointment went well and I will be having a neuro exam in Clinic so yes @Nichola75 it is happening face to face .Im ready for a relax now after the build up and @Karin hope your xrays go well
Thank you all for your responses.
Bannanacake
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Thanks for updating us. Definitely relax tonight. It really takes it out of you. Glad that it’s face to face next time 
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Oh @Bannanacake that is so wonderful that your appointment went well ad that you will be having a face to face neuro exam in Clinic.
What a relief, I know I get so stressed, anxious and nervous before medical appointments, and yes, you can just relax and really celebrate now.
Be kind to yourself
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Hi @Kevin1 sounds like you’ve had a lot going on - I do hope you’re doing alright. You can find our MGUS factsheet here in case it’s useful. It’s totally understandable why you have these concerns. It’s unlikely the neurological conditions you speak of would have an impact on the likelihood or speed that your MGUS would progress to myeloma. It is not yet clear why only a small minority of patients with MGUS progress to myeloma or other forms of blood cancer. Though the risk is still very low, research does point towards certain factors that are associated with an increased risk of progression, and this affects how closely MGUS patients are monitored. You can read more about these factors on pages 4-5 of this Myeloma Infosheet.
It sounds like you understandably have a lot of questions right now, so we would really encourage you to get back in touch with your GP or specialist to talk through your questions as it’s important you feel informed. As with anyone with MGUS, it’s important that you are aware of the symptoms to look out for that may indicate the MGUS is progressing, such as bone pain, kidney damage, fatigue and recurring infection, and that you report them to your doctor as soon as possible, so they can investigate whether this might be related to the MGUS or your other conditions. Some people find it useful to keep a diary Kevin, as it facilitates their conversations with their healthcare teams, so this might be useful - Your Patient Diary: For patients with Monoclonal Gammopathy of Undertermined Significance (MGUS) - Myeloma UK.
Take care and remember we’re only at the end of the phone on 0808 2080 888 if you want to talk this through further.
Alice
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Hi many thanks for your reply. Because my GBS illness has ongoing symptoms daily ,its sometimes hard to nail down any new symptoms or similar that arise. However the last 5months i have come even super fatigued.Neck pain ,lower back pain radiates around ribs and shoulder, also chest sternum dull aches.Yesterday neck xrays, my GP is also arranging MRI and Chest xrays.
Regards Kevin
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Bless you i certainly will .
Kev
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Hi @Kevin1 it sounds like you are on a roll now with all the investigations and its good to hear that your GP is sorting it .How are you managing the pain ?Its enough to have fatigue and a lot of that could be related to the neuropathy and as you say the GBS.My Neurologist put my fatigue down to the similarity of doing a 12 hr maths exam every day because my brain is working out where to put my feet ,interesting but it figures!but managing your discomfort is enough in itself so lets hope you dont have long to wait for the MRI and xrays.
All the best
Bannanacake
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Many thanks for reply,
Have suffered Peripheral neuropathy pain for many years now on off ,but as i say with last few months of new back pain and neck ,pelvis ribs,then after blood tests
Getting a call "You have mgus we wotch wait bye "
Really fretting, i know I have Anxiety depression anyway but with my current illnesses I hope the professionals not missing anything.
However hopefully hear about MRI scan soon so can tick a box either way.
Regards kev
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Hi@Kevin1 if you were able to have a conversation with your GP about what your MGUS is it may help alieviate your anxiety it is a benign condition caused by an abnormal antibody in your blood . If you ask what the name of this is called and what size it is.If it gets over a certain size yes it does cause problems and progresses .I expect that is why you are getting an xray and MRI,its very hard not to get anxious about this and yes it is a matter of watch and wait.I have blood tests every 12 weeks .Have you read the info on MGUS. I get periods when it takes over my thoughts its not nice but having a hobby ,interest ,a meditation helps.
There is a good 5 min meditation on the BCUK website which is easy to use. Fortunately I dont get pain from my neuropathy just annoying numbness in my feet which affects my mobility and mood.Re your pain ive heard that capsicum cream can help ,theres some good info on the myeloma uk website on neuropathy. Having pain is so wearing and that in itself is distressing , I hope you can ask your GP for something to help so you can have some releif.
All the best
Bannanacake
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Hi @Kevin1 there is some information on MGUS and Watch and Wait on The Blood Cancer UK website, just click on Understanding Blood Cancer at the top of the front page.
It might just help your anxiety a little bit and we are here for you and so is the Blood Cancer UK support line.
Let’s hope you hear about your MRI scan soon, I do like a tick in the box.
Look after yourself, you are not alone.
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Hi@Karin,how are you getting on and have you heard any update on getting your X rays?I was invited for a booster which was a surprise ,it must have shown up on my records and it is recomended by Myeloma UK .I didnt need to ask ,makes a change .
Hope you are doing ok
Bannanacake
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Hi @Kevin1 glad that you’re getting the required attention though you’ve been through so much. I probably had MGUS for a while but it didn’t get picked up until I had full blown Multiple Myeloma. I’m not sure whether I would have preferred to know beforehand like you that it was a possibility or just have it hit me out of the blue as in my case. I had bone problems too which led to a spinal fracture and how i got my diagnosis. I hope things get better for you.
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Hi there
Had my X-rays but no results yet but pain is less so I’m hoping all fine. They want to repeat my bloods in May/ June to see if any further progression. It’s a weird thing, I’m a calm person but MGUS is always there in the background because you have no idea if it is changing or if it will never progress but it puts me on high alert for things.
How are you doing? X
Karin
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Hi
Thank you
I’m ok no results from X-ray yet but they will let me know. Bloods repeated May/June.
I hope all good with you? X
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Hi @Karin I think it is so true what you say. I was diagnosed with a different blood cancer 18 yrs ago and I am on active monitoring or watch and wait so as you I have blood tests at intervals to see progression and I am on high alert before and during all medical tests and appointments to this day.
Yes, all good with me thanks.
Please let us know when you get your x ray results, it’s all waiting isn’t it.
Look after yourself
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It’s that unwanted companion isn’t it - they never go away!
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