This topic contains 12 replies, has 7 voices, and was last updated by 
I was diagnosed as having Mgus/borderline myeloma in May 2014 following visiting my gp with the bones in my arms & legs hurting especially at night time. I also had tingling and numbness in my hands and feet. My gp did a range of blood tests including Immunoglobulin – which came back as abnormal with a level of 11. My haematologist did more tests including skeletal survey , MRI of spine (I have had lower back pain for a while) and bone marrow biopsies. The skeletal survey &bloods were ok but the bone marrow was abnormal showing IgA and confirmed definitely mgus. I am on the watchful waiting list and have to see the Haematologist every 10 weeks for review of blood results. My IgA has gone up to 13 at its highest and dropped to 10 at its lowest before going back to11 so is classed as stable at the moment. I had never heard of Mgus and was pretty shell shocked at first but surprisingly didn’t get too upset and was quite calm. The dr has said that I shouldn’t get any symptoms with Mgus even though I told her that my hips and pelvis are really painful – she seemed to think this is to do with the herniated disc that I have at the bottom of my spine which showed on the MRI scan. However, over the last 4 weeks or so the long bone in my right arm and shoulder and ribs / upper back have been really painful – keeping me awake at night. I feel so confused suddenly about everything. Could anyone please give their thoughts. …….many thanks
Hello, I was diagnosed last October with asymptomatic myeloma IgG kappa but only just, as it was only my bone marrow showing 2% that changed it from MGUS and it is a very confusing time but you have come to the right place to ask advice ..I’ve been given lots of helpful advice, and also contact the myeloma nurses they are really helpful and kind. I did find once I was told what I had I started to have lots more aches and pains than normal but once the xray was out of the way they went away, mine seem to be stress related and as long as I can try and take my mind off things for a moment or two i don’t hurt as much. Its my check up on the 25th Feb and I am dreading it and to be honest feel really rubbish aches and pains everywhere and having trouble sleeping. You come to the right place for advice though, take care
Helen
Hi Helen,
Thank you for your reply. The Myeloma nurse that I was referred to at hospital downloaded an information sheet from this site and said it was the best one to go to for up to date information. I haven’t really discussed any of this with anyone in my family really either…..just Steve & my 2 sons and daughters-in-law and that’s just the basics. My work colleagues obviously know but as far as they’re concerned I’m okay….its just Mgus. Its like its just sort of hit me emotionally …..it might never become Myeloma but it could. Its a bit like being between a rock and a hard place. Its good to be able to get this out of my system speaking to people who are going through the same thing and can empathise. My next appt at hospital is March 4th so I am starting to feel a little edgy again.
Please keep in touch.
Thanks
Yvonne x
Hi Helen and Yvonne, I share your fear and sleeplessness. My appt is on Monday so I’m currently tortured by nightmares. The days aren’t too bad but I’m a basket of rattling anxiety at night. I’m trying to convince myself that worrying won’t change anything and is wasted anxiety but I have a head/ heart battle going on. Fingers crossed for all of us – life is bloody cruel. Do we have to spend the rest of our days under a cloud?? Everyone wants to turn us into the cliché of the positive, brave, courageous fighter but at the end of the day, I Just want to be human – not transformed into the cancer personality!! Sorry, I’m having a blue moment today.
Hi Chrissie,
Thank you for your comments which I can relate to totally. Its very difficult some days to carry on as normal with all the worries going round in your head. We’ll just have to go with it and hope for the best. We’ll give each other as much moral support as possible. I already feel better for talking to you & Helen.
Many thanks….keep in touch Xx
Hi Yvonne,
I was actually diagnosed with MGUS in 2003 with a PP of 2 and monitored till 2007 when it went up to 4. The initial diagnosis was a shock. As the years of monitoring went on and the final consultancy came in 2007 with the words you may get it when your 70 i resigned myself not to worry about something that may never happen.The stats say you have a 1% chance per year of developing to full blown myeloma. I unfortunately developed full MM in 2014 and have gone on to have a SCT and am currently in sCR. To quote a phrase used quite often here i really did lock it away in a cupboard so much so that when i started my MM journey on this website last year i mentioned my MGUS journey started in 2005. When i checked recently with the consultant he provided me with the information stating i started my journey in 2003.This would indicate that MGUS did not dominate my life,living did lol.We are all very different much like this disease and although myeloma has my full attention now i feel very fortunate that in the 11 years previous it was locked away in that cupboard.
I wish you the very best for the future,
Stanley
Hi Stanley, thank you for your comments. I will indeed try to take your advice on board re “putting it in cupboard”. To be fair I am usually too busy at work to think about it. Ironically I work in a busy gp surgery so am always dealing with other peoples problems which is a good thing I suppose. I don’t know why but its just in the last few weeks that its preyed on my mind. Its a case of just having to go with it though. I hope that your treatment is successful and you are feeling better soon. One of the drs I work for said there are new treatments being developed all the time so as you say we must stay positive.
Take care
Yvonne
Hi Yvonnese
Sorry to hear you’re having a difficult time. I am in a similar position to you in terms of being classed as mgus/borderline myeloma – and yes, I hurt alot of the time!! Bone ache/muscle pain….. it sounds horribly familiar! – & I am an active person who does Pilates 5x per week. When I spoke to Ellen ( one of the Infoline Nurse Specialists) she confirmed it is not uncommon and if you go to the American Myeloma Beacon website you will find more discussion on it. We are not imagining it!!
I ended up at Haematology via Neurology ( like you I have pins & needles which was diagnosed as peripheral neuropathy) & the neurologist recommended gabapentin &some other drugs but I decided I didn’t want to take stuff 24/7. My Gp is very good & he has prescribed painkillers which I take if I’m desperate. Stress & lack of sleep do make it worse but when you’re struggling to function because you’re in pain & worrying about appointments & what the future holds, life becomes stressful so it’s all a bit chicken & egg !!
I don’t think there are any easy answers but I know from personal experience that there is alot of support on here & it helps knowing you’re not alone. I’m also getting into mindfulness which seems to help me .
Be kind to yourself & try & stay positive:)
C xx
PS Helen & Chrissie – sorry to hear you’re having some tough days. I’m sending virtual love & hugs to you too xx
Well I saw my Haematologist yesterday. Paraprotein crept up slightly again. Had to tell her that having bad bone pain mainly in right femur, right humerus and ribs so she immediately sent me to have xrays taken. I really cannot fault the care and attention I have had with the NHS since I was first referred last May. Dr says she will call me when xrays have been seen by Myeloma bone specialist if there are any lesions and get me back pronto. My Myeloma nurse was in with us as well. She has referred me to have some more complementary massage treatment again. I had several sessions last year and it really helped. I did get tearful for the first time with them. My hubby Steve was with me as well but I felt really overwhelmed with everything this time. This bone pain is new and I have had it for a few weeks and its not going away so I had to say something. Just bit scared. Now waiting for the phone to ring….or not.
I was diagnosed with smouldering myeloma may2014 I had pains in legs arms and ribs doctor told me it was not myeloma related had Mir scan and full body X-ray no bone damage found I then asked for a second opinion and was sent for a pet scan on February 10th 2015 found lesions in pelvis spine and ribs start treatment tue10 March on myelomax1 trial. Do not let doctor fob you off you know your own body. Best of luck dave
Hi Dave,
Many thanks for your reply. These bone pains are definitely not normal aches and pains. The pain in my femur and arm / shoulder take my breath away at times and have had many sleepless nights with it. I’ve not heard anything yet….but if they say not Myeloma related then I may follow your lead and request another opinion. Just shows that the easiest tests to do aren’t always showing the full picture as in your case. Its a good job you persisted or things would have got a whole lot worse for you. Hope you are okay. Keep me posted.
Take care
Yvonne
Dear Dave
Thank you very very much for your imformation.I have had a negative mri but positive pet scan which I can now regard as a genuine first myeloma bone lesion and not a false positive .There are few references in the literature comparing mri and pet scan in myeloma (usually comparisons with skeletal xray survey .There are proposals to develop combined pet/mri scans.
It seems likely that despite false positves with the pet scan, it can detect both myeloma outside bone and plasma cell infiltration in bone in which there is not structural changes which would have beeen expected to be seen on ct or mri and hence also may not cause pain ,as in my case. The true incidence of painless lesions in myeloma is unknown unless both type of scans were done on regular surveillance basis .If pain is present both scans are required there and then .This is not established practice yet because of the absence of supportive evidence in the literature and the assumption that monitoring blood tests .M spike and FLCs are the gold standard .
Mike
http://myeloma.org/ArticlePage.action?articleId=4359
there you have it !!Mike
The topic ‘mgus/borderline myeloma’ is closed to new replies.
