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
- fatigue and malaise
- numbness and tingling sensations
- dizziness and forgetfullness
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.
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.
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.
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?
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!
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???
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 email@example.com
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!
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.
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.
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 : )
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 firstname.lastname@example.org.
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 !!!!
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.
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?!
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!
Me, Dr. Landgren, Mary Ann Yancey, RN
Dr. Landgren Research
- Monoclonal gammopathy of undetermined significance... [Blood. 2009] - PubMed result
PubMed is a service of the U.S. National Library of Medicine that includes over 19 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related
Dr. Landgren/NIH MGUS Study
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