Newly dignosed MGUS with symptoms

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RE: Newly dignosed MGUS with symptoms

by Nashville1 on Sat Jul 01, 2017 10:57 AM

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I was diagnosed with MGUS in October 2016, I had been suffering symptoms/several recogmised side effects for some time including 'Peripheral Nueropathy' but my GP poo pooed it, I was also a blood donor (I'm O Rheus Neg).

The head haematologist at my local hospital did not know if I should continue donating blood which I find amazing.

I rang the blood donor service and asked them and was tol that I could no longer donate.

It is safe to say that I have been donating blood for some years when I should not have been.

RE: Newly dignosed MGUS with symptoms

by Bassman62 on Thu Jul 13, 2017 12:48 PM

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I have had symptoms of MGUS for some years but my GP ridiculed me when a told him of the numbness in both legs and feet.

I was diagnosed with MGUS in October 2016, it would appear that I have been donating blood when I should not have been for some years due to my GPs arrogance.

RE: Newly dignosed MGUS with symptoms

by jricea on Thu Jul 13, 2017 03:20 PM

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Hi Jenn,

I am 48 and was diagnosed with MGUS in June of 2016. I also have peripheral neuropathy. I do not have a formal diagnosis yet, as the doctors are still referring to my case as "idiopathic". There seems to be some building momentum that my illness could be SFN to go along with the mgus. Could you elaborate on your symptoms so I can compare? I get tingling, pins and needles, twitching, and I have some leg weakness that tends to vary in intensity.

Thanks!

Jon

RE: Newly dignosed MGUS with symptoms

by jricea on Thu Jul 13, 2017 03:23 PM

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Hello Bassman,

Thank you for sharing your story. Could you please elaborate o your symptoms? I was diagnosed with IgG mgus last summer and I have PN also... tingling, mild burning, twitching, some weakness...

Thank you for posting!

Jon

RE: Newly diagnosed MGUS with symptoms

by christophe on Wed Sep 13, 2017 08:57 PM

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Hi Moonstone,

I found your post interesting because I also have one oligo clonal band from spinal tap and I have similar symptoms to yours. Did you get more diagnosis?

RE: Newly dignosed MGUS with symptoms

by Bassman62 on Thu Sep 28, 2017 10:32 AM

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On Jul 13, 2017 3:23 PM jricea wrote:

Hello Bassman,

Thank you for sharing your story. Could you please elaborate o your symptoms? I was diagnosed with IgG mgus last summer and I have PN also... tingling, mild burning, twitching, some weakness...

Thank you for posting!

Jon

I have many days when I feel tired and down, I have a period of nights when I sweat so much that the bedding has to be change.

I get pains down my leg, this is along with the Pripheral Neuropathy. At our main teaching hospital they insisted on testing me for a back problem regarding the Neuropathy and naturally they didn't find anything so just dismissed me.

I cannot get answers from anyone so I have finaly demanded to see someone to explain in Laymans terms just what the furure holds so I will come back and post if I do learn anything.

RE: Newly dignosed MGUS with symptoms

by jricea on Thu Sep 28, 2017 10:57 AM

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Hello Bassman,

Thank you for the reply. I can feel your frustration and concern. Having an idiopathic diagnosis is not easy. I took some comfort reading someone's reply a while back that explained that it's usually better to be "idiopathic" than to have a firm diagnosis. They said, "It's the cases that have the doctor's scratching their heads that usually turn out better." I wish you good luck and good health!

Jon

RE: Newly dignosed MGUS with symptoms

by Majolica on Thu Sep 28, 2017 01:18 PM

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Hello,

  I am sorry to hear about your mgus diagnoses.  I have had IgG Lambda mgus for almost 12 years.  Been to several doctors looking for answers over the last 12 years.  Most hematologists are told that mgus does not have symptoms.  They are finding that mgus in deed can and does have various symptoms that can impact your health.  But no treatments are usually introduced unless causing you issues.

Fatigue is one of my biggest issues as well.  I take a good vitamin that helps.  Get exercise to combat the fatigue too.

About what does your future holds?  We would all love to know that.  The fact is that your chance of getting myeloma is only about 1% a year.  So that is good news. 

RE: Newly dignosed MGUS with symptoms

by Overcomer1234 on Thu Sep 27, 2018 05:28 AM

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Hey, I am new to this and would love feedback. It’s been a year since your post; how are you feeling now? Thanks.

RE: Newly dignosed MGUS with symptoms

by jmbrown on Mon Oct 01, 2018 12:58 PM

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6 years ago my dr said that my blood tests showed that I had MGUS but this summer I collapsed and went to the ER. When they did the blood test the new dr says that I have Lyme Disease and the test shows no sign of MGUS. Go figure? Anyway, I took 21 days of medication for that and was better for awhile but lately I am lethargic, weak, arthritic in hands, other joints are stiff. This week I got a letter from the hospital that my dr left town for another job and I am to pick out a new one. I am trying to find one that specializes in Lyme Disease here in PA.

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