MGUS and chronic infections

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MGUS and chronic infections

by Majolica on Tue May 26, 2009 12:00 AM

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Hello Everyone,

    I am hoping someone can answer some questions I have had. I am the one with severe ACQUIRED  Von Willebrand less than 8 % factor VIII and MGUS.  I have been having chronic kidney & urinary infections for a year now. I got fed up with my primary doctor that I have had for 6 years. So, the last infection went to new primary doctor. I still can't get anywhere!! Does anyone else with the MGUS get chronic infections? Even a scratch gets infected now. I am also running low grade temperatures. I can't afford to go to a hematologist anymore. My crappy insurance now only pays for $300.00 a year in tests ( that would last for about a minute!) Also, what if and when I do advance to myeloma, would the treatments make my bleeding worse? I have had no communication with any doctor, I think my case is so unusual, they don't know what the heck to do for me. I have spent every dime I have to get no answers AND STILL FEEL ILL!!. Does anyone here also have leg & arm weakness? My fatique has also gotten worse over the past three years. Everything I take effects my blood, even tylenol. I try so hard to ignore my symptoms, but the infections are now 6 weeks apart. Any suggestions would be great. This site has been very helpfull.                          Thanks for Everything!

RE: MGUS and chronic infections

by stevem57 on Tue May 26, 2009 12:00 AM

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I have MGUS and fatigue. The MGUS was found because of neuropathy and fatigue. I also have weakness in my arms and legs. I have lost 40 pounds in the last 6 months and I'm losing muscle in my arms and legs. My hematologist just ordered a freelite test and I'll see him next week to interpret the results. I'm guessing my MGUS is more than that. I know it's expensive but don't give up your hematologist, MGUS can be dangerous. I'll let you know how the tests turn out. 

RE: MGUS and chronic infections

by mmsurvivor on Tue May 26, 2009 12:00 AM

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Dear Majolica:

Like every chronic disease there is problems and tiredness as your immune system is fighting off disease constantly.  Have yoou looked in to adding natural immune booseters like Cod Liver oil, Immune support, Kidney support, (in form of vitamins and minerals) Using fresh vegie Juice. Taking Pure cranberry juice or cranacton caps.  Read up on all the natural ways to help yourself.  I am appalled at the number of docs who just ignore Mugus and say you will either get better or worse...

Do what you can to help yourslef.  You might wat to speak with someone at www.cancercenter.com they have great live help and maybe, if you have the right insurance, can direct you to a more understanding doc.

All the best with this.  MMS

On 5/26/2009 Majolica wrote:

Hello Everyone,

    I am hoping someone can answer some questions I have had. I am the one with severe ACQUIRED  Von Willebrand less than 8 % factor VIII and MGUS.  I have been having chronic kidney & urinary infections for a year now. I got fed up with my primary doctor that I have had for 6 years. So, the last infection went to new primary doctor. I still can't get anywhere!! Does anyone else with the MGUS get chronic infections? Even a scratch gets infected now. I am also running low grade temperatures. I can't afford to go to a hematologist anymore. My crappy insurance now only pays for $300.00 a year in tests ( that would last for about a minute!) Also, what if and when I do advance to myeloma, would the treatments make my bleeding worse? I have had no communication with any doctor, I think my case is so unusual, they don't know what the heck to do for me. I have spent every dime I have to get no answers AND STILL FEEL ILL!!. Does anyone here also have leg & arm weakness? My fatique has also gotten worse over the past three years. Everything I take effects my blood, even tylenol. I try so hard to ignore my symptoms, but the infections are now 6 weeks apart. Any suggestions would be great. This site has been very helpfull.                          Thanks for Everything!


 

RE: MGUS and chronic infections

by artsyamerican on Tue May 26, 2009 12:00 AM

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On 5/26/2009 mmsurvivor wrote:

Dear Majolica:

Like every chronic disease there is problems and tiredness as your immune system is fighting off disease constantly.  Have yoou looked in to adding natural immune booseters like Cod Liver oil, Immune support, Kidney support, (in form of vitamins and minerals) Using fresh vegie Juice. Taking Pure cranberry juice or cranacton caps.  Read up on all the natural ways to help yourself.  I am appalled at the number of docs who just ignore Mugus and say you will either get better or worse...

Do what you can to help yourslef.  You might wat to speak with someone at www.cancercenter.com they have great live help and maybe, if you have the right insurance, can direct you to a more understanding doc.

All the best with this.  MMS

On 5/26/2009 Majolica wrote:

Hello Everyone,

    I am hoping someone can answer some questions I have had. I am the one with severe ACQUIRED  Von Willebrand less than 8 % factor VIII and MGUS.  I have been having chronic kidney & urinary infections for a year now. I got fed up with my primary doctor that I have had for 6 years. So, the last infection went to new primary doctor. I still can't get anywhere!! Does anyone else with the MGUS get chronic infections? Even a scratch gets infected now. I am also running low grade temperatures. I can't afford to go to a hematologist anymore. My crappy insurance now only pays for $300.00 a year in tests ( that would last for about a minute!) Also, what if and when I do advance to myeloma, would the treatments make my bleeding worse? I have had no communication with any doctor, I think my case is so unusual, they don't know what the heck to do for me. I have spent every dime I have to get no answers AND STILL FEEL ILL!!. Does anyone here also have leg & arm weakness? My fatique has also gotten worse over the past three years. Everything I take effects my blood, even tylenol. I try so hard to ignore my symptoms, but the infections are now 6 weeks apart. Any suggestions would be great. This site has been very helpfull.                          Thanks for Everything!


My dear - I feel your pain. I was diagnosed w/ MGUS last fall - only because I MADE a primary care physician order an immunofixation - I actually thought I had Waldenstroms disease at the time.....but it appears I am MGUS of the Multiple Myeloma flavor.

There seems to be no rhyme or reason to this assanine disorder. Uninformed doctors want to call it a benign condition w/ no symptoms - but knowledgeable doctors will tell you that monoclonal gammopathies (abnormal proteins) can wreak havoc on your body and your immune system.

I battle high levels of inflammation, bone (rib) pain, headaches, short term (to the very embarassing extent), a skin rash that will not go away, erratic nerve and spine pain that feels like I'm being hit with a bb gun, vision problems, etc, etc, etc.

Today I saw a Rheumatologist.  He said something that really hit home.  He told me that something is "brewing" and that my body is fighting it - for now. He told me that MGUS can cause inflammation - which can account for a lot of my pain - and low immune response. He told me to have a bmb. I guess the bottom line is...MGUS...no matter how you dice it is a wait and see disorder. But it is REAL and it can effect your body in a plethora of ways.   I don't know if that helps...but from now on...I'm blaming a hang nail on MGUS...and at least that will give my mind an answer..instead of wondering....what does this mean...what does that mean....which is very troubling to me.  Hugs, Amy

 

RE: MGUS and chronic infections

by Majolica on Tue May 26, 2009 12:00 AM

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Thank you for your kind words and support. I have already tried several immune builders for the past 3 years. I have pretty much been a healthy eater, I cook alot of homemade soups. I take cranberry tablets, which at first did wonders for my immune system, then all of a sudden back to infections and the antibiotics don't seem to do the job now. I drink green tea, and try to get alot of walks in. I have IgG lambda mgus .4, beta-2 1.89, borberline anemia, and alot of time high white cell count probably do to infections. I guess I just wanted to see if any other mgus people are getting the infections. I will continue to take care of myself and hope things don't get worse. Thanks again

RE: MGUS and chronic infections

by K_C_1 on Wed May 27, 2009 12:00 AM

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Good Morning Majolica;

Does anyone else with the MGUS get chronic infections? Even a scratch gets infected now. I am also running low grade temperatures.

The chemo will lower all your blood counts. But perhaps you might wish to consult with a specialist concerning your constant infections.

I can't afford to go to a hematologist anymore. My crappy insurance now only pays for $300.00 a year in tests ( that would last for about a minute!)

Have you considered contacting the AMERICAN CANCER SOCIETY and inquirying about any financial assistance. I know Revlimid has a Rev-Assist program, perhaps other med companies do also.

On a side note, it always amuses me how these docs go out of country to help some third world nation but when there's a local need, such as yours, they're nowhere to be found.

Also, what if and when I do advance to myeloma, would the treatments make my bleeding worse?

I read here from a poster who stated: "Don't borrow tomorrow's troubles". Sound advice! Your chance of progressing to MM are low. Concentrate on what effects you today.

I have had no communication with any doctor, I think my case is so unusual, they don't know what the heck to do for me.

You should consider contacting Dr. Tricot (sp) he has answered some of my questions by e-mail.

Does anyone here also have leg & arm weakness?

I don't have the strength I used to have. I believe that DEX has an affect on our muscle mass. Not to mention the low blood counts contributing to the loss of stamina.

Everything I take effects my blood, even tylenol.

Tylenol will thin the blood.

Take care;

Kevin

RE: MGUS and chronic infections

by Majolica on Wed May 27, 2009 12:00 AM

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Hello K.C

      I am not on any treatments what so ever, yet everything I take seems to thin my blood. I don't know what to expect when and if I ever do need chemo. I would think it would add to my severe bleeding condition. If one doctor would ever talk to me for more than 15 mins I could ask if the chemo would actually reverse the bleeding condtions if it caused by the adnormal proteins. But, I am i in 10 million that acquired this condtion, especially the very low factor VIII. I had only had a brief internet conversation with a Jason Carpenter (mens health magazine editor in NCY) who has the same acquired von willebrand. He is only 34 and it took several doctors in different countries to figure him out.  He did progress to mm , but the diagnoses was difficult because his bleeding condtion was giving off false blood test readings because we are making extra white, red, & platelets to make up the poor clotting. He only emailed once, so I can't ask any more questions. I do know he said I need BMB often because that is where the MM showed up more. However, I will probably never get another one because I could not stop bleeding for days. With only few cases like mine there is no comparison to go by, even my symptoms can't be explaned. For the past 3 years since diagnoses I have done so much research, but still can't make any sense to all my symptoms. I would love to find a doctor or hospital that would at least try some kind of treatmenton me. The only thing they tried was IVIG to get me through surgery (which is experimental) . It got through the surgery, but with complications. So, if I ever get in a accident....probably will be dead meat. BMB 3 years ago 6%                 Thanks so much for your help again!

RE: MGUS and chronic infections

by Judy1959 on Wed May 27, 2009 12:00 AM

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You need an oncologist, you need treatment. You need to call the IMF 800-452-CURE International Myeloma Foundation, west coast, open 9-4 M-F. Maybe they can get you help and direct you to have it paid.

Don't delay you are going to get worse. Have you applied for disability? How old are you? Places will pick up costs, even these drugs for MM if you can the company they too will help.

Get an oncologist! Get help now! Hopefully the IMF can help direct you to a onc in your area and someone then can help with the cost.

Write your senator, scream to be heard but please get into treatment.

Judy 49

RE: MGUS and chronic infections

by K_C_1 on Wed May 27, 2009 12:00 AM

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Good Morning Majolica;

I am not on any treatments what so ever, yet everything I take seems to thin my blood.

You may be looking in the wrong direction. Do you have a bleeding problem that is compounded by the MGUS?

I don't know what to expect when and if I ever do need chemo. I would think it would add to my severe bleeding condition.

I don't agree with this comment. I take an aspirin daily to keep my blood thin. Otherwise, I may be succeptable to clots.

Jason Carpenter is only 34 and it took several doctors in different countries to figure him out.  He did progress to mm , but the diagnoses was difficult because his bleeding condtion was giving off false blood test readings because we are making extra white, red, & platelets to make up the poor clotting.

If his case is similiar to yours this is where I would invest some time. Find out the name of the doctor who last treated him.

Do not lose hope. There are many doctors in this country, you just need to do some research and find the one who is familiar with your condition.

Take care;

Kevin 

 

RE: MGUS and chronic infections

by Majolica on Wed May 27, 2009 12:00 AM

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I think no one knows why I acquired the bleeding condition, probably will never know.  The m-protein is so small that it might be not from that, but the fact that my symptoms all started at the same time of diagnoses you would sure think it the mgus or some other blood cancer. All I heard was I am very complicated and I think they have only seen 1 other person like me and he was older, I am 47, but feel like 80.  I keep saying I need to right a book, its been so so frustrating and I put up a good front around the the people I love. The only support has been from this forum (THANK GOD!) because a spouse of 30 years that has turned his back in time of need has been salt on the wound.   Thanks so much!
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