What Is MGUS??

Hardly a "benign, symptomless" blood disorder.

I truly believe that someday MGUS will be given a different name. Something like "Halfway to Hell Disorder" or "Running From the Beast Disorder." I think any new name will do as long as it enlightens clinicians, patients, and family members to the reality that MGUS is anything but a symptomless, benign disorder. At least it is not in my case - and it is not the case with most MGUS'rs I know.

Our chief complaints include:

  • bone pain (ribs, lower back, neck, hips, jaws, etc.)
  • electrical shock pains that come and go
  • inflammation
  • headaches
  • fatigue and malaise
  • numbness and tingling sensations
  • dizziness and forgetfullness
  • depression/anxiety

My timeline:

Spring 2007: Rib pain begins. PCP suggests I see a Rheumy. Rheumy says RA and Lupus tests negative - must be fibromyalgia. PCP says no to fibromyalgia due to my high SED rate and high CRP rate.

Spring 2008: Moved to Florida. Saw doctor for escalating bone pain, and a terrible bout with the flu. Was given oral steroids.

Summer 2008: Changed Doctors (old one almost ran me over in their parking lot). Complained of rib pain, now lower back pain, and stomach pain. Blood tests showed anemia. GP ordered sonogram of stomach. Showed scattered diverticula and slightly enlarged liver/spleen. Out of frustration I googled all of my symptoms in one long string. A disease called Waldenstrom's came up. I cried my eyes out. I had every one of the symptoms. I asked my GP to order an electrophoresis. He laughed in my face when I told him I was worried about having Waldenstrom's! But he ordered the electrophoresis anyway. It came back with an M Spike of .3, positive for IGG Kappa MGUS. Which doesn't advance to Waldenstroms but could advance to Multiple Myeloma. Changed GP's.

Fall 2008: Saw an oncologist for the MGUS dx. He ordered a full skeletal xray and blood work. Skeletal x ray showed nothing related to MM e.g. lesions, fractures, etc. Blood Work came back "normal." Onc says first test must have been false positive. I ask him to rerun the test just to make sure. He huffs and puffs, then complies. Week later he calls to tell me this time my m-spike is 0.6. Changed Oncs.

Winter 2008: Saw a Gastroenterologist for anemia and stomach pain. He orders an endoscopy and colonoscopy. Dx - scattered diverticula and colon polyp. Removes colon polyp. It is benign. Tells me to eat more fiber for diverticula.

Spring 2009: See new GP. I complain of extreme fatigue and bone pain. I tell him about MGUS. He tells me MGUS is very common - not to worry about it. Just check on it every year. Tells me I probably have sleep apnea and this is causing the fatigue. He orders a sleep study.

Summer 2009:Sleep study reveals sleep hypopnea. Also reveals I wake up 28 times a night due to pain (alpha disturbances). Orders a C-PAP. Suggests I have fibromyalgia.

Summer 2009:Go to a large cancer center for the complete work up. I tell them my pain in my ribs and back have become unbearable. Expert MM Oncologist runs a battery of tests including a bone marrow biopsy. Test results are not alarming. Onc says I am low risk MGUS. Meaning there is only a snowballs chance in **** of this turning into Multiple Myeloma. Suggests I work with a new GP for pain management.

Fall 2009: New GP orders a battery of blood tests. Orders a lumbar MRI and Bone Scan. M spike is 0.2., For the first time Bence Jones proteins show up in urine. B-12 is low, SED rate high, Cholesterol is High, Sugar is high. MRI reveals disc degneration in the lower spine. Bone scan is negative for lesions. GP prescribes pain meds, steroid injections, B-12 shots. Repeats Electrophoresis. Results show no Bence Jones proteins in urine. Doctor believes MGUS is nothing. Refuses to fight insurance company for a full MRI despite the recommendation of the Radiologist.

Winter 2009:

Bone pain, electrical shock sensations, twitching, numbness, dizziness, forgetfullness, continue to grow in intensity. Depression and exasperation sets in. A local onc orders another round of bloods tests and a bone density test. Electrophoresis shows bi-clonal gammopathy has developed - IGG Kappa and now IGG Lambda. DEXA scan shows osteopenia. Local onc declares the two clones cancel each other out so I no longer have MGUS. Large cancer center disagrees. Says I still have MGUS but is not concerned by the development of bi-clonal gammopathy or osteopenia. Suggests GP order bone strengthener. Started on B-12 shots at home, nasal spray bone strengthener, and Calcium with D.

Spring 2010:Went to emergency room with jaw pain and extreme dizziness. EKG appears abnormal to ER doc. Am admitted to hosptial. GP comes to my room to visit and says EKG is fine - small glitch nothing to worry about. Has a cardiologist look at it and he agrees. Am released the same day. GP orders a Pain Doctor to see me. Prescribed Flexeril, Hydrocodone, and Klonapin. Follow up with Cardiologist, GP, and Pain Management Doctor in 1 week.

April 25th- still in pain, but most of the pain is masked by muscle relaxants and pain pills - but very dizzy and tired. Looking forward to participating in MGUS study at the National Institute of Health this summer. The NIH is trying to find the link between MGUS and MM. They are looking for more MGUS'rs and SMM'rs if you are interested contact Mary Ann Yancey, RN. Thoughts: Having MGUS is certainly not as bad as having MM. However, getting support from clinicians, friends and family members when you have "almost cancer" is exasperating. My advice - be your own best advocate. Don't let any one blow you off. What you have is REAL. The pain is REAL. Be proactive. Join a blog. Talk to those who have walked a mile in your shoes. Read research on the topic. Join a research study.

Fall 2010

Went to the NIH (National Institute of Health) to participate in the MGUS study. Dr. Landgren and Mary Ann Yancey are great people! The bone marrow biopsy the NIH conducted confirmed the biclonal gammopathy IGG Kappa and IGG Lambda - which I have read is rather rare. My M-Spike was 0.4 and my plasma cell concentration was 0.05 % of all cells with 40% of the plasma cells being abnormal (monoclonal). Dr. Landgren was very sympathetic as to all of my neurological problems and ordered (out of kindness; not protocol) many autoimmune tests - e.g. Lyme's Disease, Lupus, RA, etc but they all came back normal. My SED rate and CRP are still very high. I will return in 6 months to participate in the imaging leg of this study.

Winter 2010

A fall at work the latter part of October did not help my lowerback issues! Workmans Comp doctors ordered an MRI of my lowerback which showed moderate stenosis, disc herniation, and Tarlov Cysts. The WC spine doc said I should not be in as much pain as I was. I guess he was inferring I was exaggerating my symptoms to get out of work and sent me to a Neurosurgeon. The Neurosurgeon ordered an EMG and a Nerve Conduction Velocity Test. The results showed I had peripheral neuropathy. And because the doctor reading the test said it was chronic in nature - it was determined my pain was from reasons other than my fall. And so the vicious cycle continues....what is causing all this pain?

Spring 2011

I finally decided to see the pain management doctor again. He offered opiates...and I declined citing I'm a single Mom and a Kindergarten teacher and can't go around drugged out all the time. He asked me what then did I expect him to do? I told him about the EMG/Nerve Conduction Study and asked if I could get something for "nerve pain." He said SURE! So he prescribed Neurontin 100 mg 3x a day. OMG...finally...something worked! I couldn't believe the difference in how I felt. The electrical shock pains in my legs were gone and my sciatic pain was hardly noticeable - even my headaches seemed to be getting better. Although I had to reduce the dosage to just one at night due to incredible fatigue (I am a lightweight when it comes to meds) my pain is better than it was. However....I am now beginning to have more and more tingling sensations (vibrations) on the bottom of my feet and my upper arms - but at least it's not painful - just strange.

I also had my yearly DECA bone density test dones and although I am still at the Osteopenia stage - I lost 6% bone mass in one year - and that was while taking Fosamax! I blame myself for not taking the Vitamin D pills along with the Fosamax - it's supposed to help with absorption. But the pills give me such a horrible stomach ache! Ugh.

I contacted Moffitt and told them about the loss of bone density as well as the neuropathy and they ordered a round of blood tests. M spike is still biclonal and low at .4 %. My hemoglobin was down to 11.3, Hematocrit was low at 18.1, and RDW was high at 18.1. The Onc at Moffitt said they were not concerned and for me to follow up with my PCP. SERIOUSLY?! You are not concerned? At this rate I'll be nothing but a pile of fat and muscles in less than 10 years! Oh well...I know the NIH has my back (and marrow lol) and I go back in a few months...so I'll try not to think about it till then!

Summer 2011

Went to the NIH for this leg of the MGUS study. The trip consisted of blood work and meeting with Dr. Landgren. M Spike is at .4. CRP still high. Hemoglobin was fine. RDW still high. Free light chains in normal range. IGG Protein 1160. Albumin slightly low. ALT & AST elevated. LDH high. Uric Acid high. B2M high. It was great to see Dr. Landgren and Mary Ann Yancey, R.N. Everything looks "stable." I LOVE the NIH! They are sooo organized and efficient.

In July - I was helping my daughter rearrange her bedroom furniture and it felt like something popped in my mid back. I called my new PCP and she told me to go to the ER. They did a CT scan of my neck and brain! Go figure! I told them it was my mid/lower back! Anyway they did find I had a UTI which was suprising. I remember those being painful. I haven't felt a thing! So they gave me Bactrim and I suppose I'll follow up next week sometime. This has me a little concerned about my kidneys - first the high Uric Acid in my blood and now the unstable urinalysis. I know MM can wreak havoc on your kidneys but can MGUS???

August 2011

My new PCP tells me I have Kyphosis, Scoliosis (no surprise there), that I'm 5'6.5" (I lost an inch in a year)! This combined with the fact I lost 6% bone mass last year - I'm starting to worry. Dr. Landgren says if I am in pain (and I am) I should have a new skeletal survey and blood work done. I think this is sound advice!

BTW - he tells me the NIH has a new program for newly dx Multiple Myeloma patients -here is what Dr. Landgren wrote:

FYI: we just opened a very modern study for newly dx multiple myeloma pts. Using carfilzomib, revlimid, and low-dose dexamethasone; I expect 100 percent response rate, and I think we will be able to put over 75 percent of the pts into complete remission! Again, this study is available for newly dx multiple myeloma pts throughout the country. This is probably one of the best studies - in terms of very effective therapy with low toxicity profile! - in the entire country. We'll put the first patient on the study this week; we will have 44 more slots available. This is very, very good therapy (and the NIH gives it for free!!)!
Please help us to spread the word on the internet! Mary Ann Yancey has phone # 301 435 9227 begin_of_the_skype_highlighting 301 435 9227 end_of_the_skype_highlighting. Her email is yanceym@mail.nih.gov

November 2011

Saw a new rheumy that ran every test known to mankind! The lab took 12 viles of blood! It would appear that I now have 3 autoimmune disorders!! I've already been told I have Type 2 Diabetes...and now I have Seronnegative Inflammatory Spondylarthropathy as well as Sjogrens Syndrome. The MD ordered an MRI of my lower back and they found 2 ruptured discs, spinal stenosis, and now hip degeneration. Of course my SED rate and CRP were sky high. The doc put me on a Medrol Pack, gave me several injections, and followed up with a course of prednisone to be taken daily. I am now weening off of the prednisone and he has given me a script for Sulfasalazine. I can not begin to tell you how much I abhor this drug! I've had horrible nausea, severe headaches and an overall "out of body" cognitive sensation. I would rather be in excruciating pain than this!! I'm calling his office tomorrow and let them know I just can not tolerate this medication! Yuk! Talk about the cure being worse than the sickness! The amazing news is...after all the steroids...my inflammation markers are down. For the first time in eons...I have a normal CRP!! Woo Hoo!

Hugs,

Amy

Spring 2012

Wow - so cool to see all the new bloggers. We need each other's support that's for sure. I went back to the NIH for a BMB the end of March. For the most part my MGUS is stable. I was told by one of the docs that more than likely my MGUS is caused by the inflammation from all my autoimmune probs and the odds of it morphing into MM are slim to none - which is very good news.

My Rheumy recently put me back on Methotrexate and Folic acid given the fact my CRP is pretty high again (been off steroids for some time). He also said I can use Celebrex and an occasional 10 mg prednisone for pain mgt.

TBCH - my back is killing me! It feels like the pain/problems are crawling up my spine. For the first time - I've started having pain in my cervical spine. My kyphosis seems to be growing - yikes...wonder if they have a bell ringing job for me somewhere : \

I am worried about Ankydosing Spondylitis (AS). My Rheumy says I have seronegative inflammatory spondylarthropathy that can eventually morph into 4 or 5 different diseases. I think he was leaning toward Psoriatic Arthritis - but I'm starting to wonder about AS.

Well whatever it is - it would appear that Methotrexate covers a world of autoimmune probs - so it will probably help with this. I am going to seriously work on losing weight. This time I am going vegetarian. I hate meat with a passion and have to psyche myself up to eat eggs (the whole embryo thing grossses me out) so this shouldn't be too much of a stretch. I am already low on iron so I plan on eating lots of spinach! I'll let you know how it goes. /Take care all...and Happy Mother's Day to my momma bloggers.

Summer 2012

Methotrexate is the pits. I guess it must have been working some because now that I'm not taking it - I'm far more stiff..but I absolutely cannot stand the side effects. I was planning on going back to work - come hell or high water in August - because I've been without health insurance since February 1st...and it is terrible not to have health insurance...but I recently found out that I was approved for Social Security Disability (when a door closes; God opens a window).

The pain in my lower back due to the herniated discs/spinal stenosis/Tarlov cysts seems to be my most consistent cause of pain. I take Celebrex and Prednisone for pain relief more often than I would like to. I certainly cannot stand to gain any more weight from the darn Prednisone!

I will be seeing an Orthopedic Surgeon as part of an Independent Medical Exam for my workmans comp case at the end of this month. I PRAY the surgeon can offer a solution to this relentless pain. I used to be such an active person....now just getting up from a seated position is difficult! : ( Something has got to give - and I mean soon. I have never liked the idea of having surgery but I'm beginning to think it will be my only hope at having a quasi normal life again.

Hugs!

Winter 2012

Just got back from the NIH in Bethesda, MD. Flight up was horrific! Ugh. They ran a battery of blood tests (12 viles in all) and so far I am disappointed to find out that my CRP (inflammation marker) is back up. Under 3 is normal - mine is 24!! So...apparently the Plaquenil is not working. I am also concerned that my LDH and my Reticulocyte % is elevated. They didn't explain anything yet - I believe they are waiting till all tests are back - but after doing a little research these two tests being elevated could mean Hemolytic Anemia - which again could be traced back to Plaquenil!! UGH. That was the end of the line drug I could take because I cannot take biologics! So...for now...my New Year's Resolution is to give an anti inflammatory diet a real go! So for at least one month - as an experiment - I will not consume dairy, gluten, night shade vegetables, red meat, etc. I went to a website that listed the inflammatory value of all foods (cool right?) http://nutritiondata.self.com/help/inflammation

and chose which foods I like. So I am going to try to incorporate those foods as staples to my diet. It will be hard! I am a cheese, milk, icecream fanatic! But I'll let you know what happens. Best wishes for a wonderful New Year!

P.S. Here is a link to my FB MGUS group. Please feel free to join us! It is a closed group - meaning the general public cannot read our discussions. Just ask to be added : )

https://www.facebook.com/#!/groups/mgusstinks/

P.S.S. MaryAnn Yancey is no longer with the NIH - she was stolen by the FDA! :'( So the contact person at the NIH is Marcia Mulquin,R.N.. She can be reached by email at mmulquin@mail.nih.gov.

Summer 2013

I went to see my local oncologist a few months ago because I am feeling sooooo exhausted these days. My bone pain is unrelenting. He ran a few blood tests but did not run the SPEP...I questioned his nurse whether this was an oversight and she asked him about it. His reply "I ran the tests that needed to be run." WTH? Finding out your M-spike is the standard protocol in bi annual check ups. The M spike can not be determined without running the SPEP...so....I guess it is time to quit playing around with local ya hoos that think they understand MGUS and go back to Moffitt.

In other news...lol..I've decided to begin a campaign to elevate MGUS from a "benign, symptomless, precursor state" to an autoimmune disorder in and of itself. It is ridiculous to hear my story told over and over by countless people on my FB webpage. It is infuriating that we all have the same symptoms but are constantly told my doctors that MGUS does not have symptoms! REALLY???!

I believe getting MGUS the recognition it deserves will be a step in the right direction for clinicians to begin treating our condition as a disease state worthy of more than just a wait and see attitude.

My campaign title: Monoclonal Gammopathy AutoImmune Disorder !!!!

Easter 2013

Fall 2013

After nearly fainting for the second time in two weeks - I decided to go to the ER - this time by ambulance. Thank goodness they admitted me, because an on call doctor ordered a MRA which detected a .7 mm carotid artery aneurysm behind my right eye. Soon thereafter I saw Dr. VanLoveren at USF Health in Tampa and was scheduled for an angiogram. Dr. Kan performed the angiogram and was able to place a pipeline stent to divert the flow of blood away from the aneurysm. I am happy to report that the aneurysm is 100% gone! The pic below is of an art quilt I made for the Neurosurgery Department of Tampa General. I will be forever grateful they saved my life!

As for the MGUS - numbers are still stable but pain is on the rise.

Fall 2014

My peripheral neuropathy has gotten worse. My gait is unsteady and after falling twice, I have succumbed to using a walker....but it is a pretty nifty pink one!! :). My Rheumy has started me on a new medication called Otezla, and it seems to be slowly bringing my inflammation markers down. Not huge strides but at least it is going in the right direction. My hands have become extremely weak and I drop everything I touch! Grrrr!

My Mspike is holding steady at .3 which is good news. So the question continues....does the monoclonal protein drive the inflammation or is the inflammation driving the abnormal protein?! My CRP is 16 - (normal is less than 1). So who knows?!

Winter 2014

Pain, weakness, and fatigue seem to be the name of the game these last few months. My latest MRI of my lumbar spine does not show anything earth shaking so the Neurologist believes my problems are not mechanical in nature.

I gave my car to my son. Because of feeling unsteady, dizzy, and unable to turn my head very far to any one side - I decided it was probably not a good idea to be driving...so I have joined the ADA bus gang. I am still using my walker - especially if I know I will be out of the house for any significant length of time.

My Rheumy suggested physical therapy. The first people I went to were just plain mean. The owner told me if I would quit thinking about my medical problems they would go away! WTH?! The second therapist came to my house and usually just sat around and talked for an hour. So I will be looking into finding a new therapist.

My Rheumy says I have enthetitis which is inflammation of the tendons where they insert into the bone. The sad part is that this effects my entire body. I have rounds of pain in my sacroiliac joints, then my breast bones, then my ribs, back to my lower back....etc. It is a never ending vicious cycle! The good news is my CRP is down to 12. Still have quite a ways to go to 0 but progress is being made.

I love living in Florida!

Comments 61 comments

Majolica 6 years ago

Amy,

Thanks for sharing your mgus symptoms. Hope the mgus study will shed some light in the complexities of this disease.


DevonBoy 6 years ago

I stop and start my blog entries and have deleted many posts - mainly because one time its MGUS and then MM. it just gets so tedious. Last I heard it was MGUS, next time ?

Your blog is the best that I have yet seen for describing my own symptoms and the sheer frustration of the way in which friends deal with those of us with this weird scenario. "Do you still have a problem"; "has it gone"; "is it cancer", etc.

Maybe I'll be inspired to start writing again.

Good luck with wherever you are right now with 'your' MGUS.

Bye for now.


Jeanie 6 years ago

I hate it when people say, "Oh, you're fine. Don't worry about it." They are not the ones in pain. I have pain in my knees and feet. No strength to stand up when I'm in a kneeling or sitting position. I don't want to use a cane.


Fannie 6 years ago

My symptoms are EXACTLY the same as ArtsyAmerican.I have now gone to every doctor there is with the exception of a pediatrician.My pain is so bad some days I can't function....MGUS is .7 My pain is the worst in my hands & feet & now is moving to my arms,

shoulders, legs & back. I just need some advise. Am having bone marrow biopsy & full body X-Ray tomorrow. Plus 24 hour urine collection.


maejohnson 5 years ago

Was Dx in oct 10 with MGUS...I do have the same symptoms as Amy...sometimes worst than others...it has gotten better since i started increasing my activities when the pain levels are down...i have a follow-up this month...Im not scheduled for a 24 hr urine this time, but can anyone tell me...if it's okay that my urine is like water most of the time...not much color at all.

Prayin for all of us!!!


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artsyamerican 5 years ago from Florida Author

Thank you for sharing your experience with Lyrica. Does Lyrica give you any side effects? What "flavor" MGUS do you have?


susan 5 years ago

lyrica can cause swelling and fluid retintion which can also cause conjestive heart failure just to mention. my legs, feet, amkles and hands swelled sobad i looked like the pillsbury dough boy. i am disabled with chrinic pain in my lower back and my doctor was going to get me off narcotic's. the lyric was not working and i told that and printed out the sever side effects of lyric which i had and she fired me as a patient.


Ginger 5 years ago

I too have MGUS. I thought I was lucky because at first I had two doctors tell me I probably had lymphoma. My m-spike is .7 and has hovered around there since the beginning. Turned out my biggest source of pain was a (benign) intramuscular myxoma about the size of an egg. That was diagnosed with MRI; couldn't be seen on other images. It was removed but not without some damage to the hip socket which means (now that the hip pain has returned) I probably need a total hip replacement. Anyway, right after I was diagnosed 2 years ago I read the book Green for Life and started drinking a big green smoothie (just leafy greens, fruit and water) every day. I was amazed at the improvement I felt--no more migraines, fewer cravings for junky food, more energy, better mood, healthy weight loss, etc. I felt so much better that after a year, I went to eating about 90-95% "live" food--fruit, veggies, nuts, seeds, sprouts, etc., that have never been at more than 118 degrees. That is something I thought was kind of crazy and over-the-top when I first read Green for Life, but I am now a total believer.


Angel Eyes SC 5 years ago

The best advise I can give to anyone with MGUS is to try and forget about it and live your life! I was dx in 2004 with the IgM protein MGUS. I too am tired..but praise God I work full-time and take care of my husband who is not well. On good days I feel totally "normal"

In 2004 because of the tingling and pain, I was given monthly B-12 shots. After a year I could tell a BIG difference! The doc said that even if a person's B-12 level is in the low-normal range...they need B-12 therapy and boy was he right!

When I first looked up "MGUS" on the web in 2004, there really was very little information. Thankfully, the web now has a tremendous amount of information!

I do agree that MGUS has symptoms. Too many people complain of the same symptoms. You have to remember that most cases of MGUS DO NOT turn into a malignant blood disorder. So try ...try...try...to live your life without daily thoughts of MGUS. The stats are on YOUR side!


Michael B. 5 years ago

This is finally a step in the right direction for me.

I'm 31 years old and was diagnosed with MGUS in the summer of 2009. Starting in the spring of that year I had tingling sensations in my legs, stiffness and difficulty climbing stairs. My biggest problem seems to have been going to the wrong effin doctors! The pain in my legs is so severe that the only solace I have found is with opiates and living in NYC isn't helping. My pain management doctor is convinced that the pain is a "manifestation" of some kind that my brain is producing as opposed to being related to the elevated proteins in my blood. (IgG Kappa) it's seriously to the point where I cannot function without medication. The pain feels like my blood is carbonated and when it progresses, it's like a boiling frenzy throughout both legs and it only gets worse. Stairs are a different issue entirely. I used I have a 6th floor walkup; 120 steps to get to my apartment and there was no issue. Now I can't go ten steps without feeling fatigued like I had just worked out or ran for over an hour. This is unbearable. What's worse is that because MGUS is "asymptomatic" every doctor I've encountered cant validate treating me with the only thing that has ever alleviated anything!

What a relief it is to find that people with this diagnosis ate experiencing similar issues. Though, my pain seems to be more extreme than any case I have found up to this point.

Thank you so much for shedding a little light on this. Please email, I need help. BaumannMG@me.com


CinciGuy 4 years ago

I was diagosed with MGUS 3 days ago by my doctor. I have been feeling pain in my foot for about 3 months now like I was stepping on a nail and numbness down the left side of my foot. The numbness started about a year ago. I have also been having back pain for a few years now. I was diagnosed with degenerative disc about 3 months ago. My calcium is 10.5 my M-spike is 1.0. I am beside myself and taken back by the many websites who play this disease down as if its a common cold and say there are usually no symptoms with MGUS jut monitor for MM? If there are no symptoms then why was I diagnosed at 36 instead of in my 50s. Because one website says that it is a precancerous condition "affecting people 50 years of age and older." This is absolutely craziness to me. I don't know how to react or feel. Kinda going through the motions because if I am already having symptoms of this and I am 36 what do I have to look forward to? I am trying to be optimistic but its not easy. I am currently doing the 24 urine as we speak. My fingers shake constantly My legs and knees and hips have hurt me for a few years now. I am overweight and recently underwent gastric bypass surgery in august. Oh yeah and I am a nurse working for hospice.


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artsyamerican 4 years ago from Florida Author

I am sorry to hear of your recent diagnosis. I know it is scary. Try to settle down and realize this is going to be a marathon not a sprint.

Did your PCP recommend you see a Hematologist? That would be the first thing I would do (and did). But please try to see a Multiple Myeloma/MGUS specialist if at all possible.

Usual protocol after a MGUS dx is to order a bone marrow biopsy and full skeletal xray. A bone marrow biopsy generally paints a clearer picture of bone marrow infiltration of plasma cells.

Also - check out CancerCompass Multiple Myeloma forum for added emotional support. There are a plethora of people on there that have been in your shoes and are more than happy to embrace you as part of the fam! : )

As far as your heel pain is concerned...it sounds like plantar fascitis (sp?) (heel bone spur). I used to have those and lived from one cortisone shot to the next in my heel. Aww...sweet relief! Eventually it went away and I found Crocs are the best shoes ever to prevent bone spurs from returning.

Well I hope this helps. Take a deep breath. You will work through all of this craziness.

Hugs,

Amy


CincyGuy 4 years ago

It's not Plantar Fasciitis in my foot I had the surgery for that a year ago because another podiatrist thought it was I do have heel spurs bilaterally as well. The new podiatrist said its not Plantar Fasciitis because of the pain and the burning and numbness. Its more in the toes and behind the toes. I have had several cortisone injections and its relief was short lived each time. I thought it might be gout but the labs disproved that theory. The Podiatrist I have been seeing says that he thinks its the nerves for sure. He tried to order a nerve study but my insurance will not allow a podiatrist to refer me to a nerve specialist and I went back to my primary to get the referal and he did the labs first to see if anything was going on and he found MGUS. I asked to see a Hematologist because he is on vacation for two weeks and I want to get my results asap but he told his secretary to tell me not to worry about this that he doesn't even have a complete diagnosis yet. I am just concerned that the high calcium has been an issue for a while and now I am having issues because of bone loss especially in my spine. I have had left upper leg pain for some time now and didn't tell anyone because I thought it was related to my weight and would resolve with weight loss. I have degenerative disc and couple of bulging disc.

To compund things I moved to FL a couple years ago and because of my recent Hospital stays for my kidney problems I don't have enough money to go home for Christmas and am kinda stuck here alone throughout the holidays. I have been having kidney issues for about a year now. Thank you for your help and support. It is much appreciated.


jamie 6-4 4 years ago from milwaukee

I was diagnosed with MGUS last year. first time i ever heard of it, an it scared me to death,an still does.My blood doctor had me retested six months later an said the chang was insignificant and that i should get retested in a year(which would be 6/12) however for the last 8 weeks i thought i was getting a cold ,but i began sweeting real much especially at night and over the past weeks it has gotten worse to the degree that i cannot sleep hardly for having to change nite clothes 3-4 times nitely. my primary dr is sending me back early to the blood dr he thinks it may have to do with the MGUS because i should not sweet like this from a common cold when there is no feveror lung infections,plus my temp is always normal.my question is. Its 5 months early for the yeary retesting does this mean that MGUS is getting worse? Also i failed to mention that along with sweating my body itch'es an awful lot especially my back,arms and sholders,Please Please tell me what you think. I am very scared.ThankYou


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artsyamerican 4 years ago from Florida Author

I think your primary is to be commended for suggesting you see the hematologist sooner. Although sweating and itching is not really associated with Multiple Myeloma it could be a sign of something else stirring. I hope everything works out for you...please let me know what happens. God Bless.


terriellen 4 years ago

Hi everyone,

I am 48 years old and was diagnosed with MGUS about 7 months ago. My rheumatologist also believes I may have lupus (due to symptoms and ANA results being positive numerous times). After a lot of blood work, she referred me to a hematology/oncology group due to abnormal blood test results. My possible lupus diagnosis is somewhat on the back burner for now. I have also been seeing a neurologist due to pain and numbness. After more blood work, a nerve conduction test and skin biopsies, it was determined that I also have small fiber neuropathy. My hematologist ordered another complete set of blood work and determined I have MGUS. I just repeated my 3 month blood work and following are my results:

M-Spike: 0.2 g/dL - HIGH

Free Kappa Lt Chain: 8.38 mg/L (previous 15.67)

Free Lambda Lt Chain: 23.37 mg/L (previous 23.96)

Kappa/Lambda Ratio: 0.36 (previous 0.65)

IgG: 539 mg/dL - LOW (previous 1042)

IgA: 223 mg/dL (previous 207)

IgM: 233 mg/dL - HIGH (previous 259)

Total protein: 6.4

My Albium, Globulin, etc. were all within range, with some a little on the high end. The only other thing that came back HIGH is my ALT (SGPT), which is 47 IU/L. The doctor also pointed out that my glucose was high at 110. I also had a skeletal survey in the Fall and there were no lesions at that time. I have several other blood test results, but didn't want to list everything at this time. Feel free to ask what some of my other results are and I would be happy to post them as well.

I have been on several different medications for the symptoms and nothing really seems to help. I have had several rounds of IVIG treatments and they actually helped for a short time, but I did get sick from the treatments. I recently was on oral steroids (Oct - Jan) and then had the Solu Medrol IV treatments (1000 mg) one time per week for 6 weeks. This did absolutely nothing for me, besides make me gain weight! My last IV treatment was four weeks ago. I have now been experiencing a nausea feeling, which just comes on all of a sudden and lasts about 1 -2 hours. This has happened a few times over the last 3 weeks or so. I am in constant pain and it seems to move all over my body, but concentrates in my feet/toes, knees, hands, wrists, elbows and shoulders. I also get the dull pain in my arms and legs that feels like my bones and/or muscles are aching. I pretty much have a constant headache too. I have slight asthma, which seems to be worse - I have to use my inhaler more often than before.

Sorry for such a lengthy note, but I just wanted to get the majority of my information out there. Of course, I am concerned that this will eventually turn into Multiple Myeloma. It is most definitely a roller coaster ride. If anyone could give me some feedback on my test results, it would be very much appreciated.

Thank you for your time,

Terri


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artsyamerican 4 years ago from Florida Author

Hi Terri - thank you for your post. Your complaints are so common to all of us who supposedly have a "benign" condition.

Thank goodness though your Mspike is low and the other labs are looking pretty good also. Have you had a Bone Marrow Biopsy done? That really is the definitive test of all. I think it is a must along with a head to toe MRI or CT Scan. Xrays really don't show anything until the lesion is FAR advanced.

If you are interested in being part of an MGUS study your should consider contacting the NIH. They will review your case for free and order a BMB and additional blood work. I think I have their number posted somewhere in this blog. Make sure to contact Mary Ann Yancey at the NIH. If they are still taking new patients she is the go-to person. The NIH is located in Bethesda, Md.

Let me know how things go.

Take care,

Amy


mr eifion thomas 4 years ago

Hi Amy,

my mother had MGUS since 1979 , and passaway on december 21st 2009 she had amyloidosis since 2007


terriellen 4 years ago

Hi Amy,

Thank you for responding. Yes, it sounds like my complaints are certainly very common to a lot of us. No, I have not had a bone marrow biopsy yet, but my hematologist has talked about it.

I have heard that it would be more beneficial to have an MRI or CT Scan versus the skeletal survey, for the reason you mentioned. I may mention this to my doctor.

I will give it some thought on contacting the NIH. Sounds like it could definitely be beneficial.

Thanks again....it's really nice to have people to talk to who can actually relate to MGUS!

Take care,

Terri


Cindy Baumgardner 4 years ago

Hi Amy,

My husband also was told he had MGUS in 2007 and to recheck in a year. We did but in the mean time so many other symptoms came into play. At the year his health had started to rapidly decline. We were assured that MGUS was nothing to be concerned with. My husband passed away in Aug. 2009 from primary AMYLOIDOSIS. A rare blood disease only affecting 8 in 1 million. I however do not believe that it is that rare just goes undiagnosed.Four months after his diagnosis. So I too believe that MGUS is very serious. Please take care of yourself and good luck.

Cindy


Terry L 4 years ago

Hi Amy, just found this site. I am a patient at the NIH with Dr. Landgren. I have SMM. The care I receive there is top notch and Dr. Landgren is so accessible as to be amazing. I hope you are well. Terry


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artsyamerican 4 years ago from Florida Author

Cindy - I am so sorry to hear about your husband's disease and death. Amyloidosis mimics so many other diseases. I agree that it is often missed. Thank you for sharing your story.

Hugs,

Amy


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artsyamerican 4 years ago from Florida Author

Hi Terry - I am so glad you are aquainted with the superb Dr. Landgren. I go back next weekend. Although I am not looking forward to another BMB - I am looking forward to seeing Dr. L and Mary Ann.

Hugs,

Amy


veronica 4 years ago

I have just been diaognosed with MGUS, I have been on b12 injections for 14 months, and am also anaemic, I have been suffering from terrible paid in my back and rib area, also my fett and hips and shoulder hurt. My dr said that it may be fybramalgia, but is the bones that hurt I cant get out of bed sometimes due to the extreme pain. My haemotologist has requested mri and also nerve testing. The bone skeletal did not show any legions. Forgot to say that I also have uric acid in my blood, and in last yr was diognosed with high blood pressure and have edema. My question is will the MGUS develop into myeloma and there is so many different opinions surrounding this.


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artsyamerican 4 years ago from Florida Author

Your complaints are very common - unfortunately : (. I am glad your doctor is ordering an MRI - an xray will not show a lesion until it has destroyed about 75% of the bone. The odds are in your favor. MGUS only has a 1 to 3% a year chance of developing into Multiple Myeloma. Your doctor will run tests to give you an idea of your risk of developing Multiple Myeloma. I will be hoping for the best for you. Please let me know how it goes. God Bless.


veronica 4 years ago

when do you know if it turns into myeloma, as I seem to of got worse this last year with so many things goi ng wrong with me. I feel so tired sometimes I don't know how I make it through the day. My back is constantly hurting especially around the back rib area. Has anyone else had these similar conditions.


Margaret 4 years ago

I also have elevated M Protein. I also have suffered from back pain, severe back pain. I was getting epidurals and after 4 in a matter of 6 months I was told that I could not continue getting the epidurals for the back and leg pain and had a St. Jude spinal cord stimulator implanted in June of last year.. It has helped, but lately I'm back to the severe back pain. Legs are not an issue this time which is great, I could not walk across a room without severe pain prior to the stimulator. I don't know what the cause of the pain is. I've had back surgery for spinal stenosis, it failed, thus the stimulator. I believe it is because of the spiked M protein. I've had full body scan, plus bone biopsy done, nothing significant there. My protein levels are extremely high but they still say MGUS. My oncologist thought I was headed for Amyloidosis, but my protien level has stabelized and isn't doubling each visit every 6 months. I've had 2 iron infusions as I am borderline anemic. I have low vitamin D levels. I believe more studies need to be done. It's easy to say live and forget what's going on, its not easy forgetting it when you are in pain. Keep up messaging it does help. I know I just have MGUS at this point, but keep waiting for the other shoe to drop. I'm just going to keep on cruisin till them. lol


terriellen 4 years ago

Hello to all,

Just wanted to post an update....

I have my follow-up with my neurologist on 4/25 and my 3-month blood work is also next week. It's amazing how quickly those 3 months go by. Hoping the hematologist calls with good news and that my numbers haven't changed much. My neurologist has had me on Methadone for the pain and honestly, I have a very hard time taking it. It makes me very nauseated and sometimes I just cannot hardly tolerate it. I am also taking Alpha Lipoic Acid and taking B12 injections weekly. Both have helped give me a little more energy, but still have the pain. So, back to the drawing board next week. I have not been feeling very well. I have a lot of pain in my arms and legs...especially shoulders, wrists, knees and ankles/feet. Sometimes my bones just hurt inside...that's the best way to describe it. I have started working out with a trainer and that has somewhat helped, but I can only do so much.

It really is nice to have you all to talk to about MGUS and the issues that go along with it. Some days I am fine and other days I have a hard time and just need to vent. Today is one of those days. I'm sure it's because my blood work is coming up and I get a little anxious and nervous when that time rolls around.

Good luck to everyone. Keeping you all in my thoughts and prayers....

Take care,

Terri


Linda Workman 4 years ago

Amy, thank you for writing your story. I have to fight back tears because it is so close to my own story and I really understand what you have gone through. I know others diagnosed with "just MGUS", share some of your experiences and similar symptons feel the same.

I am going to be in a Study at NCI and have been corresponding with Mary Ann Yancy. It is comforting somehow to see your picture with her and Dr. Landgren.

I had experienced so many health issues that my HMO doctors believed that I was a hypochondriac and that made me feel worse. I was referred to psychiatry for anxiety disorder. Finally I saw a wonderful doctor who did an infinite amount of testing and diagnosed RA and other problems such as idiopathic PN. I had reactions to two initial RA meds and I live in a flare.

Right now my finger tips are stinging and burning simutanuously and it is hard to type. My wrists, ankles, toes, knees, neck and degenerative lumbar issues are constant. I am fairly young but often walk as though I am 100. I am scheduled for another knee repair surgery but I don't think my "good" knee or back will support it.

I was diagnosed with PN in 2007, MGUS in 2009, RA in 2010. I believe that radiation treatments that I went through as a child might have contributed to my current diagnoses as no other member of my large family has anything similar. I had two molar pregnancies, severe dysplasia, thryoid nodules removed, Epstein Bar, Asthma, one infection after another, etc.

Just a few years ago I was walking three miles a day for exercise and able to function without too much pain but that has changed significantly. I have lived a healthy life style. I have a positive attitude, laugh much and have fun with my family which include my three dogs.

Never shared on a blog before but feeling that writing this down is therapudic for me and I hope it might help someone else.

My best wishes to all.


Pat 4 years ago

I am SOOOO glad I found this!!! I was diagnosed several months ago, and the dr. told me no problems, we just need to keep periodic check on it. Diagnosis was result of trying to find out why I had anemia. I have most of the symptoms mentioned above and never knew why. I was beginning to wonder if I was a hypochondriac. I feel better now knowing that there is a reason for these symptoms - I am not going crazy. My biggest compalint right now is the extreme fatigue. I just vacuumed the small hall in my house trailer, and now I have to rest - get very tired and short-winded. As for putting clean sheets on the bed, my husband has to help. I do have good days and bad days. Thank you so much for shedding light on this. Do not know my M-spike, but I have requested that my dr send me the results of my bone marrow biopsy, as I did not know to ask about that in my "results" visit. I plan on having several questions to ask him on my next visit in July.


terriellen 4 years ago

Hi Pat,

I agree...having this blog that enables us to talk to others that can relate is so very important. Keep a list going and add to it as you think of things you want to ask your doctor at your next visit in July. You definitely have to educate yourself as much as you can about MGUS...that helps so much. You will learn a lot along the way. Please know that we all know how the emotional roller coaster feels and we are all here to talk anytime you feel the need. It's nice just to be able to 'vent' on here...it helps. Take care of yourself and we will keep you in our thoughts and prayers.

Terri


curtisd 4 years ago

Hi everyone, I am new to this as you all were once too so please bear with me. I have recently been diagnosed with mgus also in which the pcp doc i have sent me too a hemotologist but both of them seem to think its nothing. It all came about around nov last year when i was pulled from work for a series of problems pain in neck that radiated all the way to left hand fingers numbness tingling, so bad dropping things. Have been in er barely able too walk, back hurts so bad its hard too explain. Stomach and side pain, headaches the list really goes on and being treated for carpul tunnel, c-spine radiculopathy, ahh injections in shoulder, and malignant hyperten. bp until 3rd med daily 190/110 many days now down to 128/80 . But docs have treated for prostate inf. and haven't been cleared for work in 6mo still out now. My docs have said the bone scan clear so going to yearly keep track of m spike. This seems crazy er found protein in urine but no 24hr test no bone bio. but mri of shoulder was done in dec. before all of this and found what was written on disc to be benign fibrous lesion on prox. of humerous. It is all very confusing the doc,s seem to blow all of it off I am only 32 and just want to be back to work and seems haven't got the right insurance to get help to. Sorry if this is so jumbled i haven't really takled much about all my problems and they keep piling up some days seems might be ok then some get so tired need nap never done that. Do i need to look into new docs all together, i don't know? I really do wish the best for you all to stay strong and keep fighting.


MNielsen1043 4 years ago

Hello,

Please be aware of Methotrexate. I have a similar story (fighting with all doctors to get dx had a dry tap a bad bmb have anemia, etc) anyway a couple years back Rheumy told me to start Methotrexate Immuran IMMEDIATELY for what they thought was dermatomyositis. Two WEEKS later dr personally called me told me to STOP STOP STOP taking methotrexate as a special test came back showing IF I took it I had a 640 x chance of getting a type of cancer (I want ot say myeloma some loma) - thankfully, I had already prayed about it and felt I should NOT start metho right away. Thanks be to GOD I did not start it. NOW I have supposedly MGUS but a few CRAB criteria and sTILL Cannot get any doctors on same page now elevated D dimer emergency room visits pain that is unbelievable that pain meds do NOT help. I am ready for epidurals. At this point I do not care what it is just get rid of my back pain. UGH. Anyway read up on methotrexate and make SURE they ran that test - I will try to find name of it - I was "heterozygous for gene" meaning metho can cause cancer faster in ME and I presume YOU since you sound like my twin. O_O God Bless, M


curtisd 4 years ago

thanks i ll keep in mind stay clear of but within past few days being treated for prostate inf again but they cant figure why and put on this indomethacin. and infection meds.


artsyamerican profile image

artsyamerican 4 years ago from Florida Author

Thank you for the info regarding Methotrexate. I recently took myself off of it because of all the horrible side effects I was experiencing. I am interested to know the name of the test you are referring to???? I have to admit I was a little freaked out taking MTX given my MGUS. Now I am just taking Prednisone, Celebrex, and Neurontin....and hopefully this will be enough for now.


mgusvonwillebrand 4 years ago

Hi Amy,

Glad I found you again. Glad to hear your doing well. Have a great Summer. Majolica


bonnie canby 4 years ago

Hi Amy,

thought I was alone. my M spike is .67. I am being given nothing yet. Jult got back from mayo. All that they would admit was due to mgus is tlhe neuropothy in my feet. bonnie


Karen 4 years ago

MGUS diagnosed one year ago. I'm glad I found this blog. I've been thinking I'm crazy as my doctor doesn't seem worried. I suffer from fatigue , shoulder pain and foot/toe pain. It's as if everything locks up. It all started with my back, then leg swelling. Was told then I had a bulging disc (mRi was done). Spent 3 weeks on my back. Couldn't sit without excruciating pain. Then my hip bones hurt . Used prednisone at that time, which did help. So now currently waiting for dr appointment so I can tell him about my shoulders. Some days it's my fingers and I just can't get a hold of things without dropping . I don't know what to think. I used to be so active and now I'm afraid to do anything because I don't want to injure myself. Im 46 with two active kids. I just feel like I'm waiting for the 3 month visit to be told "yes" it's still abnormal results come back In 3 more months. Im sick of feeling like crap all the time !


Tre157 4 years ago

MGUS diagnosed in 2007 I am glad I found this blog also thought I was going crazy I have been looking at site for MGUS since 2007 and they all were sayng you shouldn't have any symptoms which is not true like everyone else on this blogs knows. My biggest problem now is lower back pain but also being tired all the time wake up tired no matter if I get a lot of sleep or not. This has been a rough year as far as going to work. I am 38 now already been thru the shoulder and neck pain, along with night sweats feeling sluggish thats how I was diagnosed. B12 makes me hurt all over for at least a week. I also have Bartter syndrome along with having MGUS M spike is 1.4...


artsyamerican profile image

artsyamerican 3 years ago from Florida Author

Thanks to all of you for sharing your experiences. I am sure just knowing we are not alone and have similar experiences is reassuring. Please keep me up to date as to how you are doing. I also have a FB page called MGUS Stinks if you'd like to join us for a real time dialogue. Hugs to all!


bonnie canby 3 years ago

Looked at your facebook group. Wish it was an opem group so I could join. Thanks for sharing with us.


artsyamerican profile image

artsyamerican 3 years ago from Florida Author

It is "closed" meaning the world can't read our conversations. Please just ask to be added and I will gladly add you!! : )


terriellen 3 years ago

Amy,

I cannot find the FB page MGUS Stinks. Any suggestions? I do see other pages out there on FB for MGUS, but just not this one.

Thank you,

Terri


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artsyamerican 3 years ago from Florida Author

Heh Terri - there is a direct link under Winter 2012 section : )


hopenordica 3 years ago

Hello Amy, I came across your page late last night, started to read your story and was blown away because it was somewhat similar to my own story. I had a bone marrow just 3 weeks ago, and the oncologist was absolutely certain I had Stage II Multiple Myeloma, but marrow came back negative. Hmmmm...I almost wanted to scream, kick and yell! Not that I wanted that diagnosis, at least I would have had an answer to all my continuing pain and struggle for the past 3 years. MGUS is truly a disturbing diagnosis. But, since I am a very persistent person, I will be having a second biopsy from a specialist in Multiple Myeloma. We shall see what happens. Thanks to everyone who understands this. Take care, and I will try and do the same.


Stacey Lawrence profile image

Stacey Lawrence 3 years ago

OMG what do I do??? I was Dx several months ago, immediately had a bone marrow biopsy and right now my protein levels are borderline.. I moved from NY to Tx a couple months ago and in NY they were testing me every 3 months, now they want to do blood labs every yr. I have all the symptoms daily ... I am so lost. I don't know what to do. depression is daily, pain is daily, fatigue etc.


Brenda 3 years ago

I am sorry to say that I am in the same boat. I was just diagnosed with MGUS. 1.7 M-spike and 6-10% plasma in bone marrow. My x-rays show no lesions, but I hurt all over. I was sure they were going to find spots in all my bones...but they didn't. I can't believe how much I hurt and how the doctors just dismiss my pain. I need support and pain relief so that I can start living again!


ljBennett 3 years ago

I had been diagnosed with MGUS in 2008 when they found my lymphoma (result of Sjogren's Syndrome) and my oncologist has been testing me annually to see if the MGUS was progressing. In the meantime I have been taking the C3 Curcumin complex and this past July, my blood test did not show abnormal results. I would encourage MGUS patients to take the C3 complex daily. It has other health benefits as well.

This link shows some research indicating the effectiveness of the Curcumin on MGUS:

http://www.integratedhealthclinic.com/assets/byCan...


kk. June 2013 my 45 yr old husband was diagnosed w/ MM & AL Amyloidosis. He'd shown no symptoms of either until April 2013 then he went downhill very quickly. After his diagnosis we sought treatment f 3 years ago

June 2013 my 45 yr old husband was diagnosed w/ MM & AL Amyloidosis. He'd shown no symptoms of either until April 2013 then he went downhill very quickly. After his diagnosis we sought treatment from a well known facility for rare diseases. They gave him 4-5 years but even they were fooled by his body. 7 weeks to the day from diagnosis Cardiac Amyloidosis. I'm doing my best to educate local doctors & the public about both diseases. But especially Amyloidosis. This disease can be a silent FAST killer. We were lucky we knew what took him but it doesn't make it any easier for our children & I to go on w/o him.


T. 2 years ago

I was diagnosed with MGUS in 2007. This is a superb blog and I'm so glad to have found it. I can relate to many of your symptoms. I've gotten another opinion medically and they feel my MGUS exists but to keep focused on my autoimmune disorders. The last time I've had a bone marrow aspiration biopsy done was in 2007 and my current onc doesn't want to repeat it if at all necessary. It seems like my symptoms of malaise are increasing with time I have good and not so good days. Keep up with a great blog and helping to educate us MGUS folks! :)


MommaBrick 2 years ago

I'm do glad I found this info.

Constant left side rib and lower back pain caused me to start with my GP at finding the cause. I had had Guillain-Barre' Syndrome in 1991, so I was curious if there was a connection. Pain was getting so bad in 2005-2006, I was sent to neurologist & pain management. No glaring cause of the pain showed up on MRIs, so the docs kept looking for the cause of constant pain that registered 6-7 on the pain scale.

I was diagnosed with MGUS in 2008 after a nephrologist found Bence Jones proteins in a 24 hour urine test. Yes, I insisted that a test be done after months of abnormal trips to bathroom. I won't go into details, tmi.....

I was sent to a large, specialty medical center where I endured a week of intense testing. At the end of the week the expert told me that I only have MGUS - to go home and be thankful it's not cancer and get on with my life. I told him I was thankful - but I still hurt. By this time the pain level was up to the 7-8 range...sometimes more if I had had a demanding day at my job as an elementary teacher and mom to 3 kids under 16.

Fast forward 5 years later - I'm now out of work. My pain level had increased so much that I was rarely less than an 8. My principal had told me that I wasn't able to keep the pace with my job. If my illness was interfering I needed to either quit or do better at keeping up. "There's no such thing as light load when you're a teacher. You either are, no matter what it takes, or you aren't." That's what I was told in January 2013. My last day to work was March 30, 2013. Those of you who experience symptoms with MGUS know what I'm talking about when I talk about the physical pain, mental & emotional stress, and mental fog I was in all the time. Not fun symptoms anytime, but put someone like that in charge of teaching fifth graders from 7:30 til 3:30 with no break, then at least 2 hours of planning & paperwork each day - and I thought I was going to just die right there in front if my class because if the intense pain!!!!

Sorry for the rant, but does anyone else have pain this bad from a supposedly a symptomatic disease???

I'm going back to an oncologist this week at the recommendation of my rheumy. No blood/urine check since 2009 when that specialist sent me home from the multiple myeloma Mecca. I'm a little nervous about what the results will be. I'll keep you all posted. Thanks for the support this forum offers.


shaylene 2 years ago

This sounds so similar to what I feel daily. I've been to many doctors that won't do tests on me. I finally gave up but recently my numbness in hands and feet lasts all day, pain in my back near my ribs down to my hip. Constant pain and popping of my back and hip. I can't walk sometimes or drive. I drop everything. I'm tired even after sleeping all day or night. I don't know how to help myself anymore. I've got stomach pains as well. I hope finding a new doctor will help.


Diana 2 years ago

I've was diagnosed with MGUS in 2008.

My story:

I'd had DVT (blood clots) in 2000 which went undiagnosed for 2 months since I didn't fit the profile (I was physically fit, hadn't traveled a long distance, could walk on my heels, etc.). I finally became so sick my husband was practically jumping up and down on the clinic's desk to get me help. The finally decided to do an ultrasound and I went from the clinic to the hospital with "extensive" blood clots in my left leg. I'd also had a small pulmonary embolism that, even though diagnosed by a hematologist, was discounted by my then PCP. The deep veins in my left leg are ruined.

What's that have to do with MGUS? I'm coming to that :-)

I was put on Plavix (nasty drug. do NOT take it.) since they hadn't found any reason for my DVT by doing extensive tests and I was at a high risk for more. When my new PCP moved, I changed docs. During my physical he said he'd like me to see a hematologist to see if I should be on Plavix. The hematologist/oncologist looked at my blood work (basic lab stuff for the physical) and said I should go off Plavix but he was concerned about some other results and wanted to do an extensive blood test. MGUS was the result.

I had a bone marrow biopsy that year (negative), 24-hour urine test (negative), so no MM.

Platelet count started going down. Kidney function went to 2/3 functional. Slight variations up or down in many of the blood results.

Started taking Life Extension Super Biocurcumin and some of the numbers stabilized. Platelet count, even though still a bit low, is back up to where I may not bleed to death from a cut [grin].

Then in 2011 I had another round of blood clots. This time I was sent immediately to get an ultrasound and the diagnosis was confirmed quickly. I was put on warfarin -- this time blood thinners for life.

My oncologist wanted to do another BMB. Other than the clots, the numbers had been stable, I'd been feeling moderately OK (yes to back pain, tingling, electric shock sensations, fatigue, etc... but still OK). So I hesitated when he said another BMB. "I'm looking for MM" he said somewhat testily. "I know you are" said I. So I made the appointment. In the meantime I did some research and found that they have known since 2008 that people with MGUS have a 37% increased risk for blood clots. Why didn't my oncologist know that? (I think he was too busy to keep up with research). So I canceled the BMB.

I didn't go see another oncologist until 2013, I was that miffed at the medical community. Still stable, thank the Lord. Just have many of the other symptoms that come along with MGUS, whether the medical community believes it or not. They look at you like you're crazy when you tell them.

And the wait continues.....


Mommabrick 2 years ago

I saw my local oncologist a few months ago. She spent less than 60 seconds with me & kept her hand on the doorknob the entire time. She said my bloodwork looked fine. No worries.

After seeing me in pain all these years, my mother in law talked me into seeing a friend of hers who is an internist. I spent a month with her, and the doc ordered all kinds of tests. He started w a 24 hour urine. Positive for Bence-Jones. After several MRIs & X-rays, he found no lesions but I have lipomas (fatty tumors) all in my abdomen and on my spine. He is sending me to a large research hospital for further evaluation. I'm so thankful for this internal med doctor who is also a family friend. He believed me & stuck with my case long enough to find part of the problem. He is still worried about MM, that is why the trip to the "big" hospital. I go in 10 days. I'll keep you posted.


GeorgiaSand 2 years ago

Hmm. There appears to be a rather large misunderstanding of what an MGUS is.

But I'll say this first: It's not a condition, it's a SIGN of a condition. Saying a faint M-spike is a condition is like saying a high mean corpuscular volume (MCV) is a condition.

So what is it?

You may have heard that the immune system is like your body's military. It's a very accurate description. Just like a military has different branches that do different things, so does our immune system. But instead of calling it a navy, army, marine corp, etc., we call it immunoglobulin G (IgG), immunoglobulin A (IgA), etc. They all have roles to play in the body.

An M-protein is like an extra cloned soldier in one of your "military branches." He's totally useless and completely harmless, but he's not supposed to be there. So why is he there? That is the big fat question. And the answer varies from person to person. If the numbers are high, it can be indicative of Multiple Myeloma. It doesn't CAUSE multiple myeloma, it's merely a sign of it--and only one sign, I might add. An MGUS can be present in other conditions, from hyperparathyroidism to bone disease to thyroid disease to inflammatory conditions like autoimmune disease. It could also be transient due to a brief but severe illness like pneumonia or it may signify bone changes like benign bone tumors.

In fact, the author of this blog should look thoroughly into primary hyperparathyroidism--your symptoms sound very similar to it, as should another commenter who posted saying he/she has high calcium levels. You'll even notice that there are also bone changes in primary hyperparathyroidism and that many of the symptoms of it are similar to multiple myeloma. And if you haven't done it already, ensure that you get your forearm checked in your DEXA scan. It's not something normally ordered in a DEXA screening, but if you have parathyroid disease, you could have osteoporosis of the peripheral skeleton but be missing it because you've not had a peripheral DEXA scan, only a central (spine and hips). Parathyroid.com is a good place to begin your search for understanding in that area. Parathyroid disease is something most doctors don't understand because it isn't commonly seen.

There's also something else you need to know about M-proteins: The SPEP is what they call a "biased test." What that means is that it is only ordered under specific conditions in patients with specific symptoms. It's not a regularly ordered test like a CBC or a metabolic panel where people of all levels of health (from healthy to severely ill with various conditions) would be included in the general statistics and understanding of the test itself. It's usually ordered for patients with fatigue and bone pain, for example. That means that all statistics in relationship to it (such as the chances of it moving onto MM) are biased. There's a general acceptance among many in the medical community that, in all likelihood, there are many, MANY very healthy people--and even many sick people--just walking around with an MGUS who are none-the-wiser.

What's more, the statistics for faint monoclonal gammopathies are interesting because over 84% of people with an MGUS will never transition to MM. In medicine, that is a massive discrepancy. What a "monoclonal gammopathy of undetermined significance" in medicine really means is an "M-protein of we don't know what the hell it means."

I'll keep watching this blog post. I have very similar symptoms with an MGUS (faint IgG kappa) and am currently pursuing parathyroid disease as the likely diagnosis.


mgusvonwillebrand 2 years ago

Not so benign if the m-protein leaves you without any clotting factors. And all the complications from the bleeding into your joints, muscles, bones and organs. Don't lump mgus into one benign condition. I been on this mgus road for over 8 years...


joyce 23 months ago

I have been just diagnosed with mgus. I have been reading about this and I find your letter very enlightning and helpful. I am waiting for blood test results and skeletal survey. I have been on sickleave for 3 years with lower back pain and proctitis, now this, ouf I must remain positive, thanks again ,joyce cantin québec canada


Kim 22 months ago

Hi all, diagnosed @ 7 months ago, pain so bad could hardly lift milk from fridge, I have had tests and tests, neurologist told me I have poly peri phial neuropathy, restless leg syndrome, fibromyalgia. Oncologist said my SPEP confirms IGG MGUS present(3 times now on blood tests). Today was brutal, feel like someone beat my feet with baseball bats and hammers. I can hardly walk on some days and on good days I over do it and pay for it with pain. I'm glad to know I'm not alone, this is just awful, soft hugs to all


Jen 22 months ago

Thank you!

My low WBC, high albumim ratio, and a monoclonal antibody in lab work ordered by my PCP led my Neuro. (Brilliant Fellow-takes care of me due to a severe iatrogenic obturator nerve injury) to examine my most recent CTS scans (spent summer hospitalized w/renal abcesses and severe infections resulting in kidney surgeries) and order more labs. He recognized an enlarged spleen and had already acknowledged my complaints of abdominal pain. Labs show a kappa light chain but no protein levels out of normal range. My PCP is saying, "No systemic inflammation and everything looks good."

I am thankful that my Neuro. is probing for the root of these abnormal, albeit if just slightly, labs.

Then I add to this the fact that following the kidney surgeries I literally slept 14-20 hrs./day from August-October and since have been extremely fatigued. I also have had excessive night sweats consistently and elevated temperature off and on.

Something is certainly amiss.

I appreciate your anecdotes and documentation of your journey. Be well!


carmenfout 20 months ago

Is there any specialist of MGUS in southern Illinois? I have been diagnosed 7 years ago and have had all these symtoms in the last two years.


julie 15 months ago

Try Low Dose Naltrexone!

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    Me, Dr. Landgren, Mary Ann Yancey, RN

    MGUS/Myeloma Specialists

    Name 
    Location
    Dr. Paul Richardson or Dr. Kenneth Anderson
    Dana Farber Cancer Institute, Boston, MA
    Dr. Bart Barlogie 
    Myeloma Institute for Research and Therapy 
    S Vincent Rajkumar, M.D. or Dr. Morie Gertz
    Mayo Clinic, Rochester, MN
    Dr. Brian Durie
    Cedars-Sinai, Los Angeles, CA
    Dr. Raymond Alexanian
    M.D. Anderson, Houston, Texas
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