MGUS

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MGUS

by LJLewis on Sun Dec 15, 2013 09:04 PM

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Hi My name is Leise and I am 46 and was diagnosed with MGUS in July 2012. I had all the tests done, bone marrow, skeleton and a blood test every 6 months. This year I have been in so much pain with my lower back, legs and feet, that at one point I was on 4 different pain and anti-inflammatory tablets and was still in horrific pain! Couldn't walk far, do any chores and would result to lying on my back over a gym ball to relieve the pain. I'm now on 3, which are Amitriplyine, Naproxen and paracetamol, goodness knows how many of them I take in a day and I'm connected up to a TEN's machine till bedtime!! I have only just realised yesterday after reading the Myeloma website again that all my symptoms are listed. Every time I go to the doctors about my pain they either try a different painkiller or refer me back to the consultant! They don't seem to know much about MGUS symptoms. I found this blog only last night and I'm really shocked at how may of us are suffering! If there's anyone out there that could shine some light on these issues I would be really grateful. Thank you for reading my blog, if you have any answers please reply. Leise

RE: MGUS

by JudeH on Mon Dec 16, 2013 06:44 PM

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Hi Leise. I was diagnosed with MGUS in August 2013. It was a complete shock especially as my GP referred me to all the myeloma websites. I have since seen a.Haemat ologist, and am being monitored with 3 monthly blood tests. For the past year+ I have been suffering from a painful left hip radiating into my back. Even sitting in a chair and lying in bed was painful. After my MGUS diagnosis I spent hours researching the net. One site that I've found really informative is Margaret's blog - myeloma. After reading her story and doing further research I now take curcumin 8gm, quercetin, vitamin D and fish oils rich in omega3. I started this concoction at the end of October. The pain in my hip and back has completely gone.I am looking forward to my blood test due early next year as I feel it will have improved. Hope this information is of help. Regards Judy

RE: MGUS

by Mausyf on Sat Dec 21, 2013 07:40 AM

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Hi Jude! Surely you shouldnt have that much pain with just MGUS at this stage, have you had all the tests done?

RE: MGUS

by fossey on Mon Dec 30, 2013 03:56 AM

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Hi Leise,

Where do you live?  It sounds much like my experience with Doctors who have no clue about MGUS!!  I finally went to a Haematologist in Sydney who agreed that some patients do suffer bone pain with mgus.  He also explained in depth what to look for in the way of changed blood results etc.  I now make the trip to see him each year - he's one of the few I trust and who doesn't think I make up all my symptoms.  I was diagnosed in 2004 and have my bloods checked every 6 months at the moment.

Good luck with it all - feel free to put your worries and comments on this excellent forum.  I would be lost without it.

Fossey

RE: MGUS

by JudeH on Tue Dec 31, 2013 09:17 PM

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Hi Mausy Thanks for your reply. I was told that I have MGUS in August. Since then I have had a full skeletal set of x-rays which were OK, and I was told that I needed monitoring because I have a raised Kappa Lamda ratio of 8.07. I do have some questions when I see the Haematologist next after my blood test in 2 weeks. Pain had been a problem for some time but definitely resolved now - ? Due to curcumin.

RE: MGUS

by SheilaSoCal on Wed Aug 16, 2017 03:12 PM

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I was diagnosed last year with MGUS. My symptoms include neuropathy in legs, feet, arms. My joints in my thumbs hurt. When I first get out of bed I look like I'm 100. I'm a young 61 but starting to feel like an old 100 . I ache deep in my leg, arm, and leg bones. I've had bone marrow biopsy, full-body MRI, full-body x-ray, and a fatty-tissue sample. At this point no multiple myeloma but oh man, I am scared. Ive had 2 followup appts at the 6-month interval and at next one doc said he may switch me to 1-yr. I wish there was a support group where I could actually talk with another MGUS person.

RE: MGUS

by SheilaSoCal on Wed Aug 16, 2017 03:13 PM

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I should have included hip bones ache too.

RE: MGUS

by fossey on Sun Oct 01, 2017 01:41 AM

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I was diagnosed in 2005 but think it's clicked over to MM. Since June I vomit a lot, have stomach pains, bruise easily and a persistent cough!!

RE: MGUS

by Annie02 on Tue Feb 06, 2018 11:51 PM

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Omg I so understand how u all feel I have recently been diagnosed with mgus I have been going for blood work as well Every time I walk in there I hold my breath Is this the time it shows it’s ugly head Since I’ve been diagnosed with this I’ve been having Hip ,knee pain and shooting nerve pain threw out my Body and tired all the time When I spoke to the doctor she said oh u shouldn’t Have any pain mgus does show any symptoms and looked at me like I had two heads I since had more blood test and the numbers are going up and she wasn’t even aware so I’ve asked for a second opinion Have a Appointment in Hamilton in April I’m really hoping they will Give me a better understanding on were this is all going What are the chances of this processing I come from a long line of cancer victims within my family If there is anyone that can help me understand what these numbers mean I would welcome any information ,worried

RE: MGUS

by DAleinad on Wed Feb 14, 2018 03:45 PM

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Hi Annie, I'm a Multiple Myeloma survivor. I was diagnosed in 2011 and spent the next year (2012) in hell. My journey was brutal but I survived and I am now doing VERY well. I've been in remission for over 5 years. My year in hell was a result of very bad medical treatment and my doctor’s inability and stupidity to diagnose my condition. Looking back on it, I blame myself for not taking more control of my own condition. Anyway, my story is for another time.

I see you have been diagnosed with MGUS. While that doesn't always progress to MM, it very well could. I don't how old you are or where you live but I have some suggestions for you. First, take control and don't rely on doctors. Diet and supplements are the most important things you can do for your condition. You are in the early stages and in my opinion, knowing what I know now, you can keep MGUS from progressing to smoldering MM or full blown MM. You have time and there are lots of things you can do. I've done them and I'm sure you can too.

First, watch this YouTube clip.https://youtu.be/wrbS3t2sfZYIf after you watch it you would like to discuss some ideas, please reply to my message.

All the best,

Dan A

 

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