Hi @Kevin1
Gosh, you’re really going through the medical wringer at the moment aren’t you. Sounds like you have so much going on. Will be thinking of you later, let us know how you get on today.
Warmest wishes.
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@Kevin1,
Thank you for posting. You do seem to be very busy with medical investigations. I hope these bare fruit. I think it is dusgusting that some medics tried discount MSK pain as due to mental health issues. Surely pain causes mental health issues? I hope your op to remove the lymphoma goes well. Let us know what the results are.
Helen
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Hi @Kevin1
Just wondering how you are doing as you were waiting for some results?
Xx
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Good Sunday morning all,
X ray results regarding shoulder clavicle.
Borderline osteoarthritis in AC joint and clavicle bone it’s Rubbing together.
MRI results regarding lumbar spine,L4-L5 vertebrae compression? Or Fracture?
This was seen by my orthopaedic DR ,as he said his Spinal knowledge obviously is not his specialty.
Getting referred to his Spinal surgeon colleagues for next adventure 
Yes I worried regarding MGUS has gone to another level SM MM ,but January bloods say not.
June my next blood work.
But 14months of horrendously painful lumbar pain,hips legs.
Keep you posted
X
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Hi @Kevin1,
Thank you for taking the time to update us. I’m sorry to hear of the pain you continue to deal with- do you have any support in managing this, such as from your GP? It’s good to hear you’ve been referred to an appropriate specialist, however I appreciate there’s a lot going on here for you. Please do remember that our Support Team are if you’d like to talk any of this over (0808 2080 888 or support@bloodcancer.org.uk).
Best wishes,
Tanya.
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Hi @Kevin1 ,
I can quite understand your worries around MGUS progression but as it’s not, that’s great news. Not so good you are in pain but hopefully that can all be managed.
Take care x
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Hi @Kevin1 sorry to hear about the pain you are still experiencing.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in 2003 but between 2011 and about 2014 I fractured and compressed L1-5 and T 12 vertebrae and I lost 5 inches of height so I remember the pain I was in and the GP kept on telling me it was pulled muscles.
She really apologised and acknowledged the pain I must have been in when my scan results came back. The osteopath thought I would be wheelchair bound.
Pilates saved me and I am a great walker these days too.
Yes, I still get anxious before and during tests. If I do get good news I find it hard to accept it.
Please let us know how your tests go and look after yourself, pain is so debilitating.
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Morning,
Yeah definitely frustrated time,so much to digest.
Sometimes am sure people think I’m zero grateful for all Medical Staff,but that’s not the case .
As in all walks of life there’s that difficult 1% who lack empathy,knowledge, understanding,just so that I seem to meet that 1% .
Thanks again to you all for taking Sunday out to post.
Enjoy your day
Regards Kev
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Hi, Erica, apologies for not replying, I’ve been chasing up my consultants office to find out what’s on going, I received a letter stating “ These did show a paraprotein of 10.6 g/l, serum free light chains were slightly elevated with kappa 216, lambda 6.4 with a ratio of 34. That’ll require regular monitoring, through haematology. My haemoglobin, kidney function , liver function and calcium levels were normal. Using the Mayo Prognostic scoring system this puts me in a low-intermediate risk group, with a 21% risk of progression to myeloma or a lymphoproliferative disorder at 20 years.
Apologies but I’ve not a clue what I’ve just written, other than I’m assuming it’s fairly good news. I’ve an appointment scheduled for April for more bloods and to see consultant.
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Hi @RM952, I am not medical at all but it sounds good news to me too.
I don’t get tied up in the medical language.
I believe in celebrating all the good news myself.
Good luck with the appointments in April and please let us know how you get on
Look after yourself
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Hi@RM952,thank you for posting and I was glad to hear from you with your results .I understand them as they are simlar to mine although you cant compare as we are all different but it was interesting.
After being tested for a light chain last November and Jan my Kappa:Lambda ratio is
2.988
Which now puts me in the Low/Intermediate risk level so I have moved up a notch.
I am on 4 month testing so May for me .
As @Erica says look after yourself and let us know how you get on.
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Hi @Kevin1
Thank you for updating us. Sorry to hear you are in so much pain.
I too have mild AC joint OA on both shoulders and eight or nine years ago went through a period where I had lower back pain, pain in hips and legs and trouble walking. It resolved with physiotherapy exercises. So I can appreciate your discomfort and worries.
It is good that you are being referred on to a spinal surgeon for proper interpretation of your mri, although it means you are waiting longer for answers. Far better to get an opinion of an expert! It is encouraging that your bloods are not showing signs of progression of the MGUS.
Best wishes
Helen
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Having difficulty negotiating this forum, but I did post end of last year saying I’d just been told I had MGUS (October 2022). Have just found out from GP that it is IgG Lambda and blood levels were 30.5 in October. Not sure what they were the first test. I’m also waiting on seeing dermatology for a skin biopsy because I have a lot of skin lesions, and one of them was biopsied 15 years ago and reported as being consistent with amyloidosis. At the time it got dismissed because I was tested things like Bence Jones protein, and the Dermatologists said it wasn’t consistent with cutaneous amyloidosis, so they just decided it wasn’t anything important. The haematologist I was thought it might be useful to get another skin biopsy done before they saw me again, but obviously it isn’t being seen as urgent. How often are people with similar blood levels having tests done? My GP said that I would probably be put under the community team who would send out the blood test forms to me.
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Hi @cemc I think you are posting rather well.
I think blood testing is so individual and I have gone from monthly to 6 mthly over the years. I have also been referred by my haematologist back to my GP for monitoring and if anything goes amiss I will be fast tracked back to the haematologist.
That brought about a lot of thoughts and feelings, like abandonment in me.
I have also had 2 ops for skin cancer on the top of my head so I look like a mixture of Friar Tuck and Worsel Gummidge.
Please keep posting and look after yourself.
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I’ve read here a few times, I’m still really confused & probably in shock, I was told I had MGUS last year & have been monitored by a hematologist every 12 weeks, I have no idea about my levels etc as I’m extremely thick & suffer with ADHD (I find it all very confusing & struggle to take things in) I was 28 when I was ‘diagnosed’ I’m now 29.
I have been poorly since 2019 with what was suspected to be gallbladder problems, intense pain in my abdomen (high up right hand side) extremely sick & lost over 2 stone in weight. I have an enlarged spleen & have suffered with a few kidney infections & multiple infections in this short period of time (late 2019-now) I have had 2 MRI’s & 2 CT scans along with a fair few ultrasounds. I was just wondering if anyone else my age (now 29) has been diagnosed with MGUS? The hematologist I see said he’s never seen anyone as young to have this? But surely I can’t be the only one… xx
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Hi @LauF93 a great big welcome and I am so glad that you have had the courage to post.
I expect you are so confused and probably in shock, I was, and I freeze at that time and just do not ask any questions.
I find I have to write everything down that I want to ask for my next appointment.
I certainly do not think that you are thick, I felt the same as you when I was diagnosed.
I am sorry to hear that you have been poorly since 2019 and obviously that is since before Covid times, it must have been so difficult for you.
I hope someone your age will be able to share their experiences.
I think we have to remember that some blood cancers are quite rare and a single haematologist might not see that many of each in their careers.
I have a common blood cancer and I was the only one with any blood cancer at my medium sized GP practice when I was diagnosed, my government local authority had never had anyone working there with a leukaemia before.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Don’t be put off by the medical speak on here, some people are very knowledgeable
on here, I am not.
You say you are being monitored every 12 weeks, that is often called ‘watch and wait’ and ‘active monitoring’. I have been on that regime for 19 years, since diagnosis and I feel a very lucky girl and long may it continue.
Have you got any support?
You are now part of our forum family so please keep posting.
The main thing is that you really look after yourself and be kind to yourself.
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Thank you so much for taking time to reply, I really appreciate your kind words & advice. I’ve been getting checked for over a year now but have never asked for a print out of my levels, I think I will do this next month at my next appointment. I had a major operation when I was only 6 weeks old, since then I’ve caught every virus, bug & illness going throughout nursery, primary school & secondary school, my mum always assumed I had a very weak immune system because of the surgery & only being 6 weeks old, I think now it all makes sense. The hemotoligist I see is very helpful & I feel that I can contact him whenever I need too which is a good thing I guess. Does anyone else with MGUS suffer with frequent infections? xx
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Hi @LauF93,
Thank you for taking the time to write here & a very warm welcome to the forum. This is a safe space for you, and I’m so glad you’ve reached out. I’m sorry that you’ve been poorly. As Erica said you are not thick at all. Being given a new diagnosis can be confusing & overwhelming, & a lot to process. Would you like to talk things over with our Support Team? Please do call us on 0808 2080 888 or email us on support@bloodcancer.org.uk if so.
I wondered if you’d seen any of ours or Myeloma UK’s resources? I thought I’d share them here, just in case they’re useful-
Monoclonal gammopathy of undetermined significance (MGUS) | Blood Cancer UK
Your Patient Diary: For patients with Monoclonal Gammopathy of Undertermined Significance (MGUS) - Myeloma UK
The Myeloma UK diary has information about monitoring and space for you to write your results. May I ask whether your consultant is aware of the frequent infections you described? It must be tough having to deal with them so often. I’m pleased to hear you can approach your consultant, and I’m sure others on here will share their experiences, too.
Take good care of yourself, and please don’t hesitate to reach out to us.
Best wishes,
Tanya.
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Hi @LauF93
Welcome to the forum. Yes you are young to have a diagnosis of MGUS, but I’m sure that you are not the only person of your age to have it. It is more common in older age groups and is usually found as an incidental finding to some other investigation. I am 63 and was diagnosed just over a year ago. The important thing is that you are being monitored on watch and wait. This means that if there are any changes they can be picked up quickly and treatment started if needed.
I have downloaded the MGUS diary mentioned by @TanyaBloodCancerUK above and record my blood test results in it. If you want get your previous blood tests results from your hospital you can do this via your hospital’s access to health records service, which you will find on their website. It is free service but can take a while.
Before you go to your next appointment can I suggest you make a note of any infections you have had since the last appointment , any aches and pains, any fatigue and weight gain or loss (my consultant usually asks about these things) and any questions you wish to ask.
Being diagnosed with a blood condition that you or your family or friends have never heard of can be scary and difficult to get one’s head around and it takes time to come to terms with.
Best wishes
Helen
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carlys_myeloma_journey Carly is 38
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Check both lovely ladies out you may get more hits from the youngsters
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