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Lisa54
@lisa54

Posts: 17
Joined: May 29, 2016

I have MGUS

Posted by @lisa54, Jul 2, 2016

I started having health issues when I was a very young gal around 4. I was told at a plasma center when I was 18 I couldn’t donate and I should be the one on the table receiving a donation. The doctor told me to go see an oncologist and I never did. For four years I complained to my primary doctor my symptoms and she finally told me to go see a psychologist. I did as told and they told me to get a different doctor. I did. The new doctor sent me to Roger Maris Cancer Center in Fargo, ND for some tests Sept. 12th, 2012. Within two hours they told me I had MGUS and what to look for as far as symptoms. I went to the doctors every 6 weeks for the first year.(2013) Then I became extremely anemic and hormones way out of wack. Roger Maris did nothing for me. I kept calling the nurse and telling her that I was getting sicker and sicker. Nothing again done. I made an appt with Mayo. Had many tests and stayed for 4 days seeing many doctors. (2014) Now it’s 2016 and I spent 3 weeks in the hospital. I have gone from first stage plasma cells to red blood cells to problems with white cells. Always getting infections. Anyone else out there with MGUS?

REPLY

When I was 13 a Woods lamp on my skin diagnosed Tuberous Sclerosis. Little was known of it and how it could affect you and your system over time. Most of the time they related epilepsy or partial retardation to those who had it. With my persistance to learn and live by working 31 1/2 years, getting married and raising 3 children–until 2009 when they discovered Islet Cell Cancer (in the pancreas) due to this. Fortunately, Islet Cell is slow growing and I entered hospice June 1st. Since it got to my liver, spleen, GI and GU tracts by then. Just keep on moving along one day at a time and enjoy life.

irvkay312

Liked by jharsh

Welcome to Connect @lisa54. I see that you connected with @dawn_giacabazi and @johnwburns on another discussion thread. Good to get to know a bit more about you. Please allow me to introduce you to @briansr who also has MGUS. I’d also like to tag past Connect members @anne1960 @bonniecanby @j42smith @momofthree1 who were talking about MGUS a few years ago and may come back to support you.

You’re in good hands at Mayo. I assume you’ve received information about MGUS including this overview http://www.mayoclinic.org/diseases-conditions/mgus/home/ovc-20199535 What is your course of treatment at the moment to manage the issues with the white blood cells and deal with the risk of infection?

Liked by Lisa54

@colleenyoung

Welcome to Connect @lisa54. I see that you connected with @dawn_giacabazi and @johnwburns on another discussion thread. Good to get to know a bit more about you. Please allow me to introduce you to @briansr who also has MGUS. I’d also like to tag past Connect members @anne1960 @bonniecanby @j42smith @momofthree1 who were talking about MGUS a few years ago and may come back to support you.

You’re in good hands at Mayo. I assume you’ve received information about MGUS including this overview http://www.mayoclinic.org/diseases-conditions/mgus/home/ovc-20199535 What is your course of treatment at the moment to manage the issues with the white blood cells and deal with the risk of infection?

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Feel free to post. I appreciate the feedback. Thank you

@colleenyoung

Welcome to Connect @lisa54. I see that you connected with @dawn_giacabazi and @johnwburns on another discussion thread. Good to get to know a bit more about you. Please allow me to introduce you to @briansr who also has MGUS. I’d also like to tag past Connect members @anne1960 @bonniecanby @j42smith @momofthree1 who were talking about MGUS a few years ago and may come back to support you.

You’re in good hands at Mayo. I assume you’ve received information about MGUS including this overview http://www.mayoclinic.org/diseases-conditions/mgus/home/ovc-20199535 What is your course of treatment at the moment to manage the issues with the white blood cells and deal with the risk of infection?

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nothing. Seriously..I spent 4 days in hospital and they put me on Cipro 24/7 for infection. Only gave me ibuprofen for pain and lots of fluids. They also started me on NPH an insulin, is no fun. I have type 2 diabetes also and my blood sugars where high. I have gained 40 pounds and feel like I can’t breathe normally. My legs and feet are swelled. I wear saddles because my feet don’t fit in my shoes. My breasts are very heavy and hurt day and night. I get yeast infections non stop. I eat red meat and other high Iron foods for my anemia. Mayo wanted me to do Iron Infusions and had sent orders to Roger Maris Cancer Clinic and my doctor refused the orders and told me to eat more and take over the counter Iron supplements. I don’t go anywhere much, do to fear of catching something.

@colleenyoung

Welcome to Connect @lisa54. I see that you connected with @dawn_giacabazi and @johnwburns on another discussion thread. Good to get to know a bit more about you. Please allow me to introduce you to @briansr who also has MGUS. I’d also like to tag past Connect members @anne1960 @bonniecanby @j42smith @momofthree1 who were talking about MGUS a few years ago and may come back to support you.

You’re in good hands at Mayo. I assume you’ve received information about MGUS including this overview http://www.mayoclinic.org/diseases-conditions/mgus/home/ovc-20199535 What is your course of treatment at the moment to manage the issues with the white blood cells and deal with the risk of infection?

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Often understanding and realizing others health problems and disabilities helps you realize that yours aren’t that bad. It helps you learn how to live within their means.

irvkay312

Liked by Lisa54

Could a dietician in conjunction with your doctor, come up with a solution to help your system maintain and stabilize its needs.

irvkay312

@colleenyoung

Welcome to Connect @lisa54. I see that you connected with @dawn_giacabazi and @johnwburns on another discussion thread. Good to get to know a bit more about you. Please allow me to introduce you to @briansr who also has MGUS. I’d also like to tag past Connect members @anne1960 @bonniecanby @j42smith @momofthree1 who were talking about MGUS a few years ago and may come back to support you.

You’re in good hands at Mayo. I assume you’ve received information about MGUS including this overview http://www.mayoclinic.org/diseases-conditions/mgus/home/ovc-20199535 What is your course of treatment at the moment to manage the issues with the white blood cells and deal with the risk of infection?

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type into Google american diabetes association–chat or contact for
information on your condition. Maybe you should even seek a Second Opinion
on your treatment.

irvkay312

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

Liked by Lisa54

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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I will look into that…curcumin. I just got out of hospital today. Another infection. Trying to build up my immune system. Have a nice weekend.

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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Sorry to hear you were in the hospital @lisa54. I was wondering where you went. Everything ok? How are you feeling?

Liked by Ali Skahan

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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This is briansr. Every time I try to send you direct email, post or
reply, view etc I can’t. I get a message on my screen stating ” Your
connection is not private “. I replied to a post you sent out by going to
the top of the post and using the arrows to send this. This message
needs to get to Colleen young please. I need help. briansr

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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She will see this I’m sure. You sound like you are having an emergency so if that’s the case its probably beyond the scope of this forum. If you’re in a 911 level situation don’t hesitate to call it.

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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@briansr, check your email for a message from me on my procedure for sending a private message. There may be others, but mine has been working. Martin

@bonniecanby

jHi there. I have been away from this group for awhile. My MGUS numbers have remained stable. My hematologist and I credit it to the 6 grams of curcumin that I take everyday. I also have a-fib, osteoarthritis and osteoporosis. In the ast 3 months I have fallen twice causing compression fractures. They have been fixed. Now I am scheduled for a knee replacement because that knee has been causing my falls. My anemia is under controll with b-complex injections. Is everything connected I don’t know but I hope this is the last surgery that I will ever need. Anyone that messages me I will respond..

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Put the cursor to Colleen Young at top of your message and press. Send message to Colleen.

irvkay312

Hi @briansr, I sent your issue to tech support. It should be resolved soon. Thank you @johnwburns @predictable and @irvkay312 for stepping in to help problem solve while I was absent 🙂

Brian, if you’re able to post now, I hope you’ll share your experience of MGUS with @lisa54 and @bonniecanby

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