Hi. I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS) 3+ years ago after going to the doctors with leg pain. Every step I took was painful. I also have recurrent bouts of sinusitus which I usually need antibiotics for. I’ve had an MRI which shows I have bulging discs and x-rays show arthritis in my knees and lower back. I get intermittent bouts of pain in my ear which radiates into my top left jaw, roof of my mouth and into my chest. These only occur every few weeks and only last a few minutes. As I’m writing this it feels like every bone in my face is aching, there is pain in my ears and I have a headache. At the moment I’m on Brufen Retard and Lanzoprazole to protect my stomach plus steroids because I’ve not been able to catch my breath for the last few days. I feel totally drained and have asked if I can have my yearly blood test early, so it’s booked in for next week.
Sorry for the long blurb but I have also been using Dr Google (bad, I know) and all the symptoms I have plus dry mouth and eyes which I forgot to mention are symptoms of Sjogren’s Syndrome. It mentions Monoclonal gammopathy of unknown significance (MGUS) in the article I read. Has anyone else heard of this? I have mentioned it to my doctor so they are looking at blood tests for this.
I feel totally drained, and haven’t really felt great since the Monoclonal gammopathy of unknown significance (MGUS) diagnosis. Not sure if it’s psychological or what.
Thoughts are with those who are feeling the same.
Wow @JoPea you have a lot going on.
I was exhausted reading your post I am not surprised you are exhausted and drained…
Is Dr Google your best friend or worst enemy?
Please do let us know how you get on and be really kind to yourself, I certainly can relate to your feelings so really look after yourself
Thanks Erica. Dr Google probably is my worst enemy but like @Palmsprings said doctors said Monoclonal gammopathy of unknown significance (MGUS) doesn’t show any symptoms. I’m just trying to make sense of why I feel like this.
Thanks for your reply.
Yep - been diagnosed with M-Gus recently and waiting to see an haematologist . The doctor I first saw said that my neuropathy was separate from my M-Gus which was picked up while having blood tests ! She said M-Gus doesn’t have any symptoms? But obviously it does ! My neuropathy was caused by my M-Gus so it seems to me , as I did read that M- Gus can cause numbness etc ? Had a reading of 2.5 not sure and can’t totally explain things at present . But it will be interesting to know what my Haematologist has to say . Having a blood one week prior to my appointment.
I’ve never been referred to a haematologist and wonder if this is something that should have been done when diagnosed? I’ve had blood tests annually but all they seem to put my painful legs down to is a touch of arthritis in my knees and lower back.
I’ve recently been feeling tired and generally unwell so had bloods taken. Some tests were out of range but it’s always ‘no action’. ESR was elevated and Serum Folate was lowest it’s ever been. The pain in my legs (left one especially) stops me from wanting to do everyday activities, hence I am feeling really unfit and lazy. Both eyes have got a haze over the lens and just wondering if this could be to do with Monoclonal gammopathy of unknown significance (MGUS). Has anyone else experienced this?
I have sweats during the day/night and painful legs prevent me from sleeping a lot of the time. I am 67 years old so not menopausal.
I was prescribed Amitryptiline and then Naproxen, however, I was hallucinating so managing my pain with Brufen Retard plus Lazoprazole to prevent stomach issues. I only take these when I know I’m going to be doing any walking or other activities that will affect my leg pain. After walking soles of my feet are hot and tingly.
I have an appointment to discuss legs again plus eyes and blood results. As we can only discuss one issue with our doctor at a time I’m wondering whether to put them all under the Monoclonal gammopathy of unknown significance (MGUS) umbrella?
Take care everyone.