Newly dignosed MGUS with symptoms

Dear Carie,

Many years ago after my third baby was born, I was experiencing flu like symptoms night sweats and my bones ached so bad I would wake up at night and cry. My DR. tested my thyroid,and also for lymse disease. These test have been repeated for the last 16 years with one thing always showing up and that was an extremely high sed rate. I have also been tested for arthritis and that always comes up negative just like the other tests. I have just in the last three years been diagnosed with fibromyalgia and shortly after that MGUS.I have seen three specialists and all say the same thing, and that is that Iam depressed causing my body to have these symptoms of my bones hurting, and fatigue,feeling sick.I wonder what is being caused by my fibro. and what is my Mgus doing. IM definitely not who I use to be! I have very little energy and if I over do it I pay with extreme fatigue and my bones hurt. I really feel like Im at a dead end. In 07 I had a bone marrow biopsy, boy did that hurt! I had the Bence jones test and also had my legs x-rayed for lesions, it all came back ok. Im supppose to see the onocologist every three months but its been almost a year now and I have no plans to go back and see him. THere is nothing the medical profession can do for Mgus or fibromyalgia so I just try to make the best of every day.

Gwen1,

I am soo sorry to hear you have struggled for so long. I too get discouraged; I am turning 39 in August and I have thought to myself that I do not see myself living like this very long and then I hear your story. I believe that ther are too many coincidences behind MGUS and the symptoms it causes; one would think the medical profession would come up with some treatment to help us who suffer regularly.

Before being diagnosed with MGUS because of the severity of my symptoms and the persistance of my symptoms I would have bet I was dying. Now that I know what the cause is and have a better understanding of the cause; I feel more comfortable and know when I have to take it easy. My doctors are still considering that I may have POEMS syndrome. I see the neurologist this week; in the meantime I take one day at a time. I am always looking for supplements that will help and I continue to stay active as much as possibel.

  I do believe that with the right doctors there is some good treatments for fibromyalgia as well as alternative therapy.

Because of the chances of MGUS progressing to cancer If I were you I would find another doctor that you feel comfortable with and continue to be monitored. At least you will have some comfort knowing that if anything changes you will be taken care of right away.

Staying positive is important; keep it up!

Take care

On 7/10/2009 gwen1 wrote:

Dear Carie,

Many years ago after my third baby was born, I was experiencing flu like symptoms night sweats and my bones ached so bad I would wake up at night and cry. My DR. tested my thyroid,and also for lymse disease. These test have been repeated for the last 16 years with one thing always showing up and that was an extremely high sed rate. I have also been tested for arthritis and that always comes up negative just like the other tests. I have just in the last three years been diagnosed with fibromyalgia and shortly after that MGUS.I have seen three specialists and all say the same thing, and that is that Iam depressed causing my body to have these symptoms of my bones hurting, and fatigue,feeling sick.I wonder what is being caused by my fibro. and what is my Mgus doing. IM definitely not who I use to be! I have very little energy and if I over do it I pay with extreme fatigue and my bones hurt. I really feel like Im at a dead end. In 07 I had a bone marrow biopsy, boy did that hurt! I had the Bence jones test and also had my legs x-rayed for lesions, it all came back ok. Im supppose to see the onocologist every three months but its been almost a year now and I have no plans to go back and see him. THere is nothing the medical profession can do for Mgus or fibromyalgia so I just try to make the best of every day.

 

I was diagnosed with MGUS in June. All my results came back great. So I don't have MM and I'm doing well. But, I have extreme bone pain, fatigue,nightsweats I was hoping for some kind of diagnosis just so that I can feel better. That's pathetic. Then I read about so many other people with MGUS who have similar symptoms. What can we do to feel better?

Hi Gwen 1, I read your entry and wanted to reply to you. I have the same diagnosis of Fibro and mgus. Last eve my Boston doctor called and told me the Fibro pain I have may well be from the protein production in the mgus. I had believed mgus had no symptoms and this left me very depressed. My m-spike is very low and I find this hard to believe. Taking life as you one day at a time and trying to remain very positive. Hey, just needed to chat. Sally

How are you doing now?

Hi, I don't have the Fibro but I do have an M-spike that the M.D. wants to call MGUS.  What interests me in your posting is that you've had Lymes disease too.  I had it about 1 year before my initial M-spike.  I'm curious as to how long ago you developed the lymes disease.  Is it under control now?  Mine seems to be OK after the normal course of treatment but I wonder if there is a connection between the two?  Have you heard of any natural helps for MGUS?

I too have been diagnosed with MGUS.  This was only after, I've seen every specialist known to man.  I have skin eruptions sporadically on both breasts.  Tingling, itching, and muscle twitches.  I am constantly fatigued but not worried about what this disorder will bring. 

My neuro doc explained that the skin eruptions and all the above is a very common.  As MGUS can cause nerve damage.  I have to repeat my blood work and nerve conduction test in the next 2 months.

I realize that I am a new comer on this message board but hope to collaborate with you all.  I wish you well and hope to speak to you soon.  Take care and keep on keeping on!

Hi all, 

am glad i found this.

My dad has had MGUS for 20 years and is on edge of MM.
His brother had it and developed WM.
My aunt recently died of bonecancer and probably had MGUS before as well.

I have loads of symptoms myself, that are getting progressively worse. nightsweats, unbelievable bonepain, numbness, pins and needles, twitches, spasms, infections, fatigue etc etc.

Unfortunately here in UK most doctors are not familiar with MM, WM and MGUS ("what is that?, never heard of it")
just like you all i felt i was crazy, since even cancer research nurse said MGUS was rare and always without symptoms.

I have now found Dr James Berendson, who is an american specialist in MM and MGUS. On the off chance (desperation) i send him an e-mail with my family background and my symptoms, asking for help.

Within hours he wrote me which test he wanted me to have done, and he wants me to send him all results per fax.

Hopefully i know soon, what is going on. 

Hello,

I was diagnosed with MGUS just last month but I was never told by my GP about my blood test results. I got a call from the hosiptal that I was being referred by Kidney doctor to go see a Heomatologist. When he told me I have an abnormal blood protein I had no idea what he was saying. He told me my blood protein levels were at the level of a 65 to 70 year olds. I am not 50 until January. He mentioned the word myeloma ( dont think I spelled the right) and then I knew what he was talking about. CANCER! He sent me right away for more blood tests and then I had to wait a long scary week and half for the results. Then when I got my appointment they were running an hour behind. I got good results I suppose. I am stable and only have to go every 3 to 4 months for blood tests. The doc mentioned to me about symptoms like being tired, leg pains and getting poorly more often. I have all of those symptoms. But the leg pains I just put down to me having bad legs anyway from sports injuries and operations on my legs from when I was a child. But in the last two weeks I have had bad pains in my legs at night and they seem to fall alseep alot and I have to move around to wake them up. Also just the other day I have done something to my knee to the point it feels swollen but isnt and I can not bend it like I should be able to. And the last few days I have had cramps in my hands and fingers and keep getting dizzy. Are these symtoms of MGUS and could it be progressing to something more sinister this quickly? I would have never known I had this if I had not had to go into the hospital twice for very painful Kidney stones in July and March. Also I have a low thyroid I have to take medicine for every day. Can this be related to MGUS?

Hi there, 

Yes it can be symptoms of MGUS.

My dad has been diagnosed with it 20 years ago now (he has the one you have that can turn into Multiple myeloma).He has cramps, legpains, shaking hands, etc. It can also lower your immunesystem.

I am trying to find out whether i have it or not too, but doctors in UK don't know (i have to tell them what MGUS is) and do not want to do test untill they know.

Can i ask where you live? USA?

I found doctor James Berenson of help to me (he even offered to check my bloodtest results) who is a specialist in MGUS, myeloma and Bonecancer for 28 years now.

google him(there are video's online as well) and that might help you.

good luck