Newly dignosed MGUS with symptoms

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Newly dignosed MGUS with symptoms

by luv2run on Fri Jun 05, 2009 12:00 AM

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Hi,

I have been officially diagnosed with MGUS after finding an M spike in my blood work. I have been experiencing persistent, progressive symptoms of fatigue, infections, nerve pain, sporadic inflammation, achey legs, night sweats, skin eruptions, muscle twitching and more after a very serious illness and low white blood counts for 3 months that went unexplained. I have seen many doctors who made me feel like I was crazy. I am finding that some doctors do not recognize MGUS as causing symptoms. My dermatologist suggested something "Brewing" before finding the Monoclonal gammopathy. My immunologist felt this was quite sagnificant and Hem/Onc does not feel this is the cause for my symptoms. What else could be the cause; I have been so frustrated and discouraged.

Any insight or thoughts that might be helpful would be much appreciated. Anyone else have MGUS with symptoms?

I have a serum IGG Lamba Monoclonal Gammopathy and had a positive Free monoclonal lambda chain Bence Jones Protein screen however when a quantitated test was done it was negative.

 I have had all blood tests, urine tests and a bone survey. Most recent blood works shows Monoclonal gammopathy is persistent but unchanged, other results include: Protein: 7.5 gm/dl, Albumin 4.88, Alpha-1 .16, alpha-2 .71,  Beta Globulin .67 Low, Gamma 1.10, Alb/Glob 1.85, KFLC 1.27 mg/dl, LFLC 2.11, K/LFLC ratio 0.60, B2 Microglobulin 1.5.

My quntitative urine tests showed no Bence Jones, small amount of albumin.

Bone survey shows 1.3 cm lucency in left femoral diaphysis which was recomended for an MRI. Sublte lucnecies in the calverium more likely to represent venous lakes. No other lytic lesions noted. Granulomas in the lung field.

 Onc Doc has referred me to a Neurologist and scheduled my follow up blood work for 6 months. MRI on leg will be done this month.

 Hope to hear soon,

Carie

 

RE: Newly dignosed MGUS with symptoms

by Mariee on Fri Jun 05, 2009 12:00 AM

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Hi Carie,

I don't about the cause of your problems, but MANY MGUS patients have Infections  some  of the other problems you mentionsed.  I hope they will respond to your message.   Hang in there!  This is NOT "All in your head".We are all here for you.

Mariee

RE: Newly diagnosed MGUS with symptoms

by luv2run on Fri Jun 05, 2009 12:00 AM

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Marie,

 Thanks for your reply. I am learning alot just from reading other's messages here. This is a great resource.

I am hoping to find support from people who understand and can relate to my situation. Do you have MM?

Carie

RE: Newly diagnosed MGUS with symptoms

by stevem57 on Fri Jun 05, 2009 12:00 AM

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I also have MGUS with symptoms although no doctor has agreed with me on that. It was a neurologist who found my m-spike while looking at my neuropathy, they sent me to the oncologist. I have the leg and pelvic pain with inflammation and neuropathy in both legs. We are not crazy, this stuff affects your body. I have "flu" days about twice a week in the summer and 5 days a week in the winter. It gets old quickly. Hang in there. My GP gave me Limbrel for the inflammation, it works great.

RE: Newly diagnosed MGUS with symptoms

by luv2run on Fri Jun 05, 2009 12:00 AM

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Steve,

I am sorry to hear you also have to deal with doctors who do not validate our symptoms. I don't know what's worse the symptoms or the doctors who don't acknowledge them. I too suffer with flu like symptoms more in the winter months. I will look into the Limbrel for my inflammation; I've never heard of that drug before.

How long have you had MGUS? Have you had bone survey's and/or Bone marrow biopsy? I have had bone survey only. Onc did not feel biopsy is necessary at this time although I am scheduled for an MRI for evaluation of a spot on my leg found on xray. Even with that the Onc did not seem too concerned. 

RE: Newly diagnosed MGUS with symptoms

by stevem57 on Fri Jun 05, 2009 12:00 AM

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I was diagnosed with MGUS last July, my GP at the time did not inform me. My m-spike at the time was 1.4. When I returned to the nuerologist they referred me to an oncologist and I fired the GP. I have had a skeletal survey, bone marrow biopsy, CT scan and many blood tests. My m-spike is now leveled off at 1.0 since my old doc had me on prednisone for a while. No lesions are present although my legs hurt daily. The bone marrow biopsy showed 8% plasma. My onc told me if I hit 10 he'll treat me, until then I'm not really sick. My new GP is really good and he's leaving at the end of the month :(.

Limbrel is new drug, it's a medical "food". Once I took it for a few weeks my inflammation went down dramatically. Good luck with the docs and the illness. Stay in touch here.

Oh, my MGUS is IGG kappa, K/L ratio 7.6, with low level bence jones in urine. I have studied this stuff so much I'm starting to feel like a doctor. I don't think docs like it when we study up but get the facts and be informed.

You are not alone or crazy!

 

 

RE: Newly diagnosed MGUS with symptoms

by stevem57 on Fri Jun 05, 2009 12:00 AM

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Sorry, a PS here. I found out about the MGUS in November of 2008. The doctors knew about it since July of 2008.

RE: Newly dignosed MGUS with symptoms

by mmsurvivor on Sat Jun 06, 2009 12:00 AM

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Once agian one of my pet peeves about the medical profession and MGUS and Multiple Myeloma, they seem to treat it as a joke.  ANYONE having those kind of serious symptoms, in my humble opinion, is in for more than just a few "MGUS" symptoms.  You might want to chat with someone at wwww.cancenter.com they have great help and insight and can get someone who really cares and listen. Find out all you can and do some natural supplements like Cod liver oil, anything to improve you immune system and go to a healthy diet. It all helps.  All the best and keep you energy strong.  MMS

On 6/5/2009 luv2run wrote:

Hi,

I have been officially diagnosed with MGUS after finding an M spike in my blood work. I have been experiencing persistent, progressive symptoms of fatigue, infections, nerve pain, sporadic inflammation, achey legs, night sweats, skin eruptions, muscle twitching and more after a very serious illness and low white blood counts for 3 months that went unexplained. I have seen many doctors who made me feel like I was crazy. I am finding that some doctors do not recognize MGUS as causing symptoms. My dermatologist suggested something "Brewing" before finding the Monoclonal gammopathy. My immunologist felt this was quite sagnificant and Hem/Onc does not feel this is the cause for my symptoms. What else could be the cause; I have been so frustrated and discouraged.

Any insight or thoughts that might be helpful would be much appreciated. Anyone else have MGUS with symptoms?

I have a serum IGG Lamba Monoclonal Gammopathy and had a positive Free monoclonal lambda chain Bence Jones Protein screen however when a quantitated test was done it was negative.

 I have had all blood tests, urine tests and a bone survey. Most recent blood works shows Monoclonal gammopathy is persistent but unchanged, other results include: Protein: 7.5 gm/dl, Albumin 4.88, Alpha-1 .16, alpha-2 .71,  Beta Globulin .67 Low, Gamma 1.10, Alb/Glob 1.85, KFLC 1.27 mg/dl, LFLC 2.11, K/LFLC ratio 0.60, B2 Microglobulin 1.5.

My quntitative urine tests showed no Bence Jones, small amount of albumin.

Bone survey shows 1.3 cm lucency in left femoral diaphysis which was recomended for an MRI. Sublte lucnecies in the calverium more likely to represent venous lakes. No other lytic lesions noted. Granulomas in the lung field.

 Onc Doc has referred me to a Neurologist and scheduled my follow up blood work for 6 months. MRI on leg will be done this month.

 Hope to hear soon,

Carie

 


 

RE: Newly dignosed MGUS with symptoms

by luv2run on Sat Jun 06, 2009 12:00 AM

Quote | Reply

 

On 6/6/2009 mmsurvivor wrote:

Once agian one of my pet peeves about the medical profession and MGUS and Multiple Myeloma, they seem to treat it as a joke.  ANYONE having those kind of serious symptoms, in my humble opinion, is in for more than just a few "MGUS" symptoms.  You might want to chat with someone at wwww.cancenter.com they have great help and insight and can get someone who really cares and listen. Find out all you can and do some natural supplements like Cod liver oil, anything to improve you immune system and go to a healthy diet. It all helps.  All the best and keep you energy strong.  MMS

On 6/5/2009 luv2run wrote:

Hi,

I have been officially diagnosed with MGUS after finding an M spike in my blood work. I have been experiencing persistent, progressive symptoms of fatigue, infections, nerve pain, sporadic inflammation, achey legs, night sweats, skin eruptions, muscle twitching and more after a very serious illness and low white blood counts for 3 months that went unexplained. I have seen many doctors who made me feel like I was crazy. I am finding that some doctors do not recognize MGUS as causing symptoms. My dermatologist suggested something "Brewing" before finding the Monoclonal gammopathy. My immunologist felt this was quite sagnificant and Hem/Onc does not feel this is the cause for my symptoms. What else could be the cause; I have been so frustrated and discouraged.

Any insight or thoughts that might be helpful would be much appreciated. Anyone else have MGUS with symptoms?

I have a serum IGG Lamba Monoclonal Gammopathy and had a positive Free monoclonal lambda chain Bence Jones Protein screen however when a quantitated test was done it was negative.

 I have had all blood tests, urine tests and a bone survey. Most recent blood works shows Monoclonal gammopathy is persistent but unchanged, other results include: Protein: 7.5 gm/dl, Albumin 4.88, Alpha-1 .16, alpha-2 .71,  Beta Globulin .67 Low, Gamma 1.10, Alb/Glob 1.85, KFLC 1.27 mg/dl, LFLC 2.11, K/LFLC ratio 0.60, B2 Microglobulin 1.5.

My quntitative urine tests showed no Bence Jones, small amount of albumin.

Bone survey shows 1.3 cm lucency in left femoral diaphysis which was recomended for an MRI. Sublte lucnecies in the calverium more likely to represent venous lakes. No other lytic lesions noted. Granulomas in the lung field.

 Onc Doc has referred me to a Neurologist and scheduled my follow up blood work for 6 months. MRI on leg will be done this month.

 Hope to hear soon,

Carie

 


MMS,

 Thanks for the advice. I am looking into some natural supplements to help build my immune system. I am starting to take vitamin D3 with vitamin A from fish liver oil. Your the second person I've heard from saying to take the fish liver ois. I hope it helps; I am currently fighting another sinus infection.

Sho would I be talking to from the wwww.cancenter.com ; are they medical professionals?

Thanks again!

 

 

 


 

RE: Newly diagnosed MGUS with symptoms

by luv2run on Sat Jun 06, 2009 12:00 AM

Quote | Reply

Steve,

 Me too! I was tested 6 months ago and was never told be my GP I had a monoclonal gammopathy. Immunologist I saw 3 months later saw the labs and brought it to my attention. He could not believe no one called me. Immunologist called my GP to get me into to see Hem/Onc. Here I am 6 months later with an MGUS diagnosis.

I was told MGUS did not cause symptoms so I was sure this must have been active MM. All recent tests show no progression; so MGUS it is.

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