Hello,
Before I go into my story, I just wanted to say I think this forum is wonderful, as I'm a lost MGUS diagnosee (is that a word) and I didn't know where to turn.
To explain, i'm a 43 year old male from the UK (husband and father to an amazing wife, son and daughter) and in January 2014 I picked up a nasty virus in the office and some serious coughing ensued. Up until then, I'd been a pretty fit guy, played golf every week, played an active part at my sons soccer club, and was always busy doing well, what I now view as pretty much mundane tasks.
However, I was diagnosed a couple of years back as being asthmatic and had had glandular fever a few years prior. Little did I know that that virus was going to come back and haunt me. (Who knew that EBV can lie dormant for so long)
Anyway, back to the story. After seeing various specialists (hematology, cardiology, gastroenterology, rheumatology) and going to my local Accident & Emergency ward, it was eventually agreed to run a complete count on me in June 2014. Up until this point, I'd had a fairly good set of results from each of the various departments and was being viewed by my local doctor as an anxiety case.
The results came back and my hematologist sat down with me to explain things. I kind of knew then that things were starting to change. He continued to explain that all of my results were good (WBC slightly low) apart from one slight abnormality at the end, where a paraprotein was found. It's something called mgus, he explained.
I'm sure he said my M spike was around 1 then, though I later found out it was 1.9 UK measurement, IgM, so perhaps I was just in a daze. He repeated the test early July 2014 (results take an age to come back) and, sure enough, my M spike was now 1.5 IgM and, interestingly, I was found as EBV positive 8 weeks prior.
From this date, and I don't know if it's just general fatigue and wear and tear through six long months, but I've started to develop muscle and bone pains like I've never experienced before (neck glands, arms, leg, back, fingers and my original problem of having sore ribs). I'm just all over sore. So you can relate to having to go in for my first marrow biopsy yesterday. Little pain they said! Still in agony newly 24 hours later....
It's still a bit of a daze even now as I'd chased for 5 months to get some results. Now somebody had shaken my world upside down in the space of 6 LONG weeks.
So that's my journey to date (currently sat on my bedroom floor in pain from the biopsy yest and a constant sick feeling I can't shake) and awaiting my next results in 10 days time.
I'd sincerely appreciate hearing any knowledge or wisdom people are prepared to share with me. Particularly things you've learnt along the way that are useful (e.g., does nutrition make a difference) and what are logical things for me to consider as next stages (therapy etc).
I'm also starting to think about the family and making them secure, so perhaps we'll sell the house - though that's for another day.
Thanks for listening, take care and God bless all.
Simon
Wiltshire, UK
Forums
5 posts
• Page 1 of 1
Re: Recent MGUS diagnosis - scared and confused
Thank you for sharing. I'm sorry you are here on these forums, but if you need this, this is a wonderful place to be.
I haven't time right now, but I wanted to wish you all the best and welcome you. I think the fear of the as yet unknown is very hard.
All the best and God bless you!
I haven't time right now, but I wanted to wish you all the best and welcome you. I think the fear of the as yet unknown is very hard.
All the best and God bless you!
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Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Recent MGUS diagnosis - scared and confused
Hey Simon,
Sorry you joined the club.
It's easy to leap to worst-case scenarios in your mind with any stage of this disease ... especially when you first get diagnosed. I remember being there. But with MGUS, you really need to remember that the chance of MGUS advancing to symptomatic multiple myeloma is only about 1% per year. That's an incredibly small percentage. Many people in the world have MGUS and never know they have it, and are no worse for it throughout their entire natural life.
Eating very healthfully and getting lots of exercise is always a good idea. I have smoldering multiple myeloma (one stage up from MGUS) and I do both and I can say that I absolutely can't tell I have the disease. Since my diagnosis, I've gotten into the best shape I've been in over 25 years. This is not to dismiss the fact that you have some maladies going on and to suggest that this will absolutely cure those maladies. But building up ones health (and therefore immune system) is always a good idea and it will certainly help minimize or prevent any side effect maladies.
Also, I wouldn't make a decision like selling your house based on having MGUS. But it's always a good idea to have your financial state in order (regardless of the status of one's health) and it does give one peace of mind. After all, we can all get hit by a car on any given day.
The more time you take to understand this disease and talk to folks on this forum, the better you will feel about this disease over time...really.
Lastly, it sounds like you will be getting your bone marrow biopsy results back soon to further confirm the diagnosis. Once you get that, you might be well advised to also ask for bone imaging to confirm if any bone damage has occurred (you mentioned you have rib and back pain). I have no idea what your choices are for front line imaging in the UK, but this is a great article on the subject: https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
Sorry you joined the club.
It's easy to leap to worst-case scenarios in your mind with any stage of this disease ... especially when you first get diagnosed. I remember being there. But with MGUS, you really need to remember that the chance of MGUS advancing to symptomatic multiple myeloma is only about 1% per year. That's an incredibly small percentage. Many people in the world have MGUS and never know they have it, and are no worse for it throughout their entire natural life.
Eating very healthfully and getting lots of exercise is always a good idea. I have smoldering multiple myeloma (one stage up from MGUS) and I do both and I can say that I absolutely can't tell I have the disease. Since my diagnosis, I've gotten into the best shape I've been in over 25 years. This is not to dismiss the fact that you have some maladies going on and to suggest that this will absolutely cure those maladies. But building up ones health (and therefore immune system) is always a good idea and it will certainly help minimize or prevent any side effect maladies.
Also, I wouldn't make a decision like selling your house based on having MGUS. But it's always a good idea to have your financial state in order (regardless of the status of one's health) and it does give one peace of mind. After all, we can all get hit by a car on any given day.
The more time you take to understand this disease and talk to folks on this forum, the better you will feel about this disease over time...really.
Lastly, it sounds like you will be getting your bone marrow biopsy results back soon to further confirm the diagnosis. Once you get that, you might be well advised to also ask for bone imaging to confirm if any bone damage has occurred (you mentioned you have rib and back pain). I have no idea what your choices are for front line imaging in the UK, but this is a great article on the subject: https://myelomabeacon.org/forum/pet-scans-for-multiple-myeloma-t3687.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Recent MGUS diagnosis - scared and confused
Hi Simon
I'm a 31 (today!) year old lady from the UK and totally know what you mean regarding the anxiety! I was so upset when found to have an IgG paraprotein back in October, and still slightly obsess over it (hence why I check this forum daily), despite the fact that the medical professionals I've spoken to were quite reassuring. Slowly I'm starting to think about it less.
If you are talking in UK measurements (g/l as opposed to g/dl) then the size of your m spike is pretty low, as is the difference between your M-spike (I've heard that they can go up and down a bit).
It's important to remember that MGUS is of unknown significance because of just that - it may (but most likely will not) cause any problems.
All the best.
I'm a 31 (today!) year old lady from the UK and totally know what you mean regarding the anxiety! I was so upset when found to have an IgG paraprotein back in October, and still slightly obsess over it (hence why I check this forum daily), despite the fact that the medical professionals I've spoken to were quite reassuring. Slowly I'm starting to think about it less.
If you are talking in UK measurements (g/l as opposed to g/dl) then the size of your m spike is pretty low, as is the difference between your M-spike (I've heard that they can go up and down a bit).
It's important to remember that MGUS is of unknown significance because of just that - it may (but most likely will not) cause any problems.
All the best.
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ADUK
Re: Recent MGUS diagnosis - scared and confused
I have MGUS, also have been doing tests since November. I know how you feel. There are uncertain things about this disorder. I just had a visit again with my doctor; he wants to do another MRI and CAT scan; a lesion was found on my last one. I had bone marrow biopsy cleared for no cancer. I have an M-spike and urine high kappas Bence Jones.
After my next MRI and tests, my doctor wants to do a head biopsy, where my lesion is. All this testing makes me nervous; every 3 months I am monitored.
It just makes me feel like the doctor keeps looking for me to go to the next stage multiple myeloma.
I am 66 and hope to make it until at least 76 or 80.
My family doctor told me the chemo for myeloma is very hard to take. This has turned my life upside down. I keep trying to forget about it; no real signs or aches and pain or bone pain yet.
When the 3 months roll around with testing again, I worry myself sick. Hope I can get over worrying so much, just wish testing would be done and over.
Hope my visits and testing can be further apart, like 6 months, so I can rest my mind of all this.
After my next MRI and tests, my doctor wants to do a head biopsy, where my lesion is. All this testing makes me nervous; every 3 months I am monitored.
It just makes me feel like the doctor keeps looking for me to go to the next stage multiple myeloma.
I am 66 and hope to make it until at least 76 or 80.
My family doctor told me the chemo for myeloma is very hard to take. This has turned my life upside down. I keep trying to forget about it; no real signs or aches and pain or bone pain yet.
When the 3 months roll around with testing again, I worry myself sick. Hope I can get over worrying so much, just wish testing would be done and over.
Hope my visits and testing can be further apart, like 6 months, so I can rest my mind of all this.
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lafletch
5 posts
• Page 1 of 1
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