confused about mgus

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confused about mgus

by Debbie_jo on Tue Apr 17, 2007 12:00 AM

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I was recently diagnosed with mgus following several botts of "Flu's" which seem to last longer each time. the doctor said he was just taking the test to rule it out because everything they were testing for came out negative-however mgus camr back positive. now i dont understand something -everything i have read states mgus has no symptoms. i have pain, headaches, swelling at times and total fatique. my physican thinks these symptoms may be pscho-somatic. does anyone else have symptoms?

RE: confused about mgus

by Oncrx on Wed Apr 18, 2007 12:00 AM

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On 4/17/2007 Debbie jo wrote:

I was recently diagnosed with mgus following several botts of "Flu's" which seem to last longer each time. the doctor said he was just taking the test to rule it out because everything they were testing for came out negative-however mgus camr back positive. now i dont understand something -everything i have read states mgus has no symptoms. i have pain, headaches, swelling at times and total fatique. my physican thinks these symptoms may be pscho-somatic. does anyone else have symptoms?

Generally you will read that there are  no symptoms, however many patients report the things you describe.  Here is a message board devoted to MGUS which may be of assistance.

http://www.choosehope.com/forum/viewtopic.php?id=11&p=1

 

RE: confused about mgus

by Pattin on Wed Jul 25, 2007 12:00 AM

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Hi Debbi Jo,

It is my understanding that Mgus does not have symptoms.  

I was diagnosed with Mgus in April of 2007 after a routine physical exam.  My primary care decided to run blood tests based on my complaints of fatigue.

I had subsequent tests ordered by my oncologist, including an MRI of my spine, bone survey and bone marrow biopsy. Bottom line is the amount of abnormal protein is very small that it is undetectable.  I will require 3 month follow blood tests with my oncologist indefinitely to monitor these findings. 

What I decided is I will report any unusual symptom to my oncologist. There are symptoms that can be related to cancer but not always.  My oncologist is aware of my fatigue and his quest is to find out what is driving this fatigue.  The hope is and for all of us with Mgus is that it does not progress to cancer.  It is my understanding that 1% of patients a year with Mgus progress to Multiple Myeloma or other cancer. That is good statistic.   I understand your confusion regarding the symptoms you describe and if they are in fact related to Mgus.  I continue to feel fatigue, pain and also have run down flu like days.  I do believe, that there is something driving these symptoms, however I do understand that Mgus is not causing the symptoms. 

Take care of your self - Patti  

RE: confused about mgus

by jwlearnnow on Sun Nov 04, 2007 12:00 AM

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Yes I was just diagnosed with mgus after years of being tired and feeling like I had the flu. I am sure the medical community is missing something by saying this disorder has no symptorms. My stomach and digestion also give me fits. I wonder if anyone has ideas of what people like us could do to lessen symptoms.

If I eat no carbs, only meat and greens I feel much better, more enegy ...as I think the mgus may create an enviornment in the body that effects gut bacteria. I am committed to finding out what is up here and what to do to improve those with symptoms like mine..any one heard of anything that might help? Thanks, JW

RE: confused about mgus

by terryt on Fri Nov 30, 2007 12:00 AM

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On 4/17/2007 Debbie jo wrote:

I was recently diagnosed with mgus following several botts of "Flu's" which seem to last longer each time. the doctor said he was just taking the test to rule it out because everything they were testing for came out negative-however mgus camr back positive. now i dont understand something -everything i have read states mgus has no symptoms. i have pain, headaches, swelling at times and total fatique. my physican thinks these symptoms may be pscho-somatic. does anyone else have symptoms?

I have recently diagnosed with mgus and have had fatigue a good bit of the time.I also have had problems with constipation and my legs becoming numb. maybe,just maybe we know something the doctors do not. I have had a doctor tell me that maybe my symptoms are psycho somatic. So I reccomend that you do what I did and find another doctor .

RE: confused about mgus

by myronlarson on Mon May 10, 2010 05:14 PM

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This is exactly what I worry about!  I went to the Rocky Mountain Cancer research center and was told nothing can be done about MGUS.  The doctor there did acknowledge the symptoms that I am experiencing as apart of MGUS:

Fatigue, Aching, Confusion for starters.  The strange part in this is a lot of this began with the concern for heart attacks that I experienced a couple years back.

My biggest problem now is finding a doctor who can at least relate to these symptoms without calling me a hypocondriac.

 

RE: confused about mgus

by artsyamerican on Wed May 12, 2010 12:27 AM

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It is horrible indeed to have our symptoms negated by doctors. I can not recommend being a part of the MGUS study at the NIH enough!!!  I am putting alot of stock in this study! I am so looking forward to being among caring, highly expert professionals.  Dr. Landgren is like the Y Ching of MGUS and Multiple Myeloma!! I am sick to death of being treated by a lunatic.  When I complained about my electrifying jolting pains in my legs - to the point of falling down...all the darn Neurologist asked was how long had I been on Prozac and if I had ever seen a psychologist!!! OMG! And this...is not the first time I've had an inadequate response to my condition.  These doctors act as if MGUS is like saying I am worried about a hangnail!  Its time for PCP's, Neurologists, Rheumatologists, Hemos/Oncs to wake up and smell the coffee.  MGUS HAS SYMPTOMS! DEAL WITH IT.  DEAL WITH US. HELP US!

Sorry...I'm very passionate about this issue!

Hugs to all MGUS'rs.

Amy

 

RE: confused about mgus

by jimbo2 on Tue May 25, 2010 11:45 PM

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Hello,

Im like your theory about gut flora.  I have MGUS and have found that drinking Kiefer has helped with my energy level, mental clarity, and mood.  I also have good results with B12 shots and a liquid B12 called Total B by Real Life Research.

All the best to MGussers!

Jim

RE: confused about mgus

by a6brooksie on Wed May 26, 2010 09:37 PM

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I'm glad I found this group. I was diagnosed with MGUS a couple of years ago. Had the 24-hours urine test (twice now), bone marrow biopsy, blood tests galore, spine x-rays and MRI (found a lot of herniation). I have migraine aura (very weird ones), headache, fatigue, back pain (increasing), shoulder pain, that "electric current" feeling, low platelets, etc. Just about everything everyone on here has talked about. Interesting, comforting, dismaying...

It will be great when the medical community agrees with all of us that MGUS is not symptomless. Just having someone agree that it's not "all in your head" is very relieving.

Good to be here. God Bless!

Diana

RE: confused about mgus

by mmsurvivor on Thu May 27, 2010 04:19 AM

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On Apr 17, 2007 12:00 AM Debbie_jo wrote:

I was recently diagnosed with mgus following several botts of "Flu's" which seem to last longer each time. the doctor said he was just taking the test to rule it out because everything they were testing for came out negative-however mgus camr back positive. now i dont understand something -everything i have read states mgus has no symptoms. i have pain, headaches, swelling at times and total fatique. my physican thinks these symptoms may be pscho-somatic. does anyone else have symptoms?

Debbie you cannot believe everything.  MGUS has symptoms and sometimes they are ignored.  I was ignored for over a year and I truly believe I had MM at the time.  No you are not having psycho somatic pains or symptoms they are real.  Make sure they follow up and start some treatment if you are having a lot of symptoms.  This is my pet peeve, Ignore the patient till they are really ill then figure the treatment. Symptomatic disease, in my humble opinion, needs treatment!! Be Assertive get a second opinion. Demand to see your results and get to a MM specialist.

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