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ReplyI have a dx of MGUS as of September, 2017. It started with severe bone pain and nerve pain, especially in my feet and calves, cramping, dxed w/polyneuropathy. That is eased up some, but eventually someone checked and I have IgG Kappa MGUS. Not sure what my M-protein count is, but they said it was so low it barely registered. Yet, I had symptoms. They also did a d-dimer test today and that was really high, but no clot so far, so they said it could be from inflammation. I’m also on a lot of medicine for PCOS that I’ve had since puberty. I feel like a walking, inflamed chemical factory, yet I have to take some of the meds forever for the PCOS. I need to make lifestyle changes and want to stop the progression of the MGUS. Thanks for being available.
ReplyHi Debbie-
I am sorry to read of your mgus symptoms. Though conventional oncology refers to pre-MM (mgus, smm) as an “asymtomatic” blood disorder, several symptoms of mgus have been well-documented. Bone and nerve pain are common. DVTs or blood clot can also occur. I took nattokinese after my own blood clot and it resolved itself eventually. I now take fish oil daily.
If by PCOS you are talking about polycystic overy syndrome, I don’t know of any relation between mgus and pcos. But I will say that green tea extract has been shown to reduce cysts and green tea extract also reduces the risk of MM.
I can also say that inflammation has been documented as a cause of cancer so reducing inflammation would be an important step for you.
I agree with you. You can follow nutritional guidelines, supplement guidelines and lifestyle therapies shown to reduce your risk of MM.
Hang in there,
David Emerson
ReplyI have lupus and have had it since 2001 along with neuropathy, scjrogens and gluten intolerant. I have been recently diagnosed with mgus.I am having bone biopsy next week. This has been the longest 4 months of my life getting to this diagnoses. They say it is IgA kappa monoclonal band. My question is what do I do to stay ahead of this? I am eating healthy and exercising everyday to stay on top of the other stuff going on. Is there anything else I should do?
ReplyHi Dana-
I am sorry to learn of your health challenges. While I can’t speak to lupus, Sjogren’s or gluten intolerance, I can speak to evidence-based therapies that have been shown to reduce the risk of MGUS progressing to full-blown multiple myeloma. The pre-myeloma cancer coaching program is designed to “stay ahead of” your diagnosis.
BTW, eating healthy and exercising are both positive steps to stay ahead of your possible blood cancer. Let me know if
you have any questions.
Thanks
David Emerson
ReplyHello,
I was diagnosed with IGG Kappa MGUS 2.5 years ago with a low M-spike of .2. My specialist is in Milwaukee and does not believe that a BMB is warranted yet. But in the last few months I have felt more fatigued and have had three infections. I work with children and am 68 years old.
Should I request a BMB? They terrify me but maybe it’s worth having. My doctor does use sedation so hopefully it won’t be as bad as I’ve heard.
Hi Susan-
I am sorry to read of your MGUS diagnosis though you are correct that your m-spike is low at .2. Requesting a BMB is up to you of course but there are other tests (blood an imaging) that may give you the assurance you seek yet cause less pain. Further, you can undergo evidence-based non-toxic therapies shown to reduce the risk of full blown MM.
David Emerson
ReplyHello – I just rec’d my MGUS diagnosis yesterday, with a M-Spike score of .6 and have been told to wait and watch. I am doing more labs to get another result to see if there’s a change in my numbers since July, which is when it was at a .6. This diagnosis was obtained totally by accident, as we have been trying to determine the reason for my having swelling in my arms and legs for about the last two years. Is this a symptom? I’m 48 years old, so all of the other issues I’m having with back/hip pain, I am totally chalking up to my age. I am pretty active btw, as my husband is a bodybuilder, so I’m in the gym 3-5 times a week. My doctor said that heavy drinking and obesity are the only known precursors for MGUS…?
ReplyHi Mary-
Several things. First, I am sorry to learn of your MGUS diagnosis. Keep in mind however, that you are young, active and your m-spike is very low. All these are positive prognostic factors. There are several factors that increase the risk of MGUS in addition to alcohol and obesity.
RE your swelling aka edema, yes, this can be a rare symptom of MGUS. See the link below. Bone pain is also a possible symptom. Your oncologist should order a bone scan of some sort in order to have a closer look at your bone health.
I know of several MGUS patients who have managed to remain in a “pre-MM” condition for years. Please consider evidence-based, non-toxic therapies to remain pre- full blown MM.
David Emerson
ReplyHello again. I watched your webinar and purchased the booklets, but I think I’m missing something from the cannabis guide. It indicates I must begin to understand dosing or how much to take and how to take it, but there is no links or list or information after that. Just the studies section. Although I read almost all of the studies section, I couldn’t find anything on which type to get, or how to use it. Above it’s listed as Cannabidiol/THC oil, so that’s what I bought, but I would love to know if I’m using it correctly. Thanks!
ReplyHi Mary-
My name is David Emerson. I am a long-term MM survivor and MM cancer coach. Cannabis, Cannabidiol and other forms of medical marijuana have not been well studied for MM. There is some research coming out of the UK and Israel but nothing for pre-MM, MGUS or SMM. Those MMers that I know of who take Cannabidiol do so slowly and build up as they can. Further, in addition to dosing is the issue of strain or the percentage of cannabinoids in Cannabidiol.
There is no standardization of strains or percentage of cannabinoids. Cannabidiol that is purchased in CA may be different than Cannabidiol purchased in Oregon or Canada. Lastly, while studies talk about increased cytotoxicity of a 1:1 ratio of Cannabidiol to THC, again, there is not set info on strains or dosing.
My point is that I have included as much info and research as I can in the guides. I believe the day will come when there is more research to draw on but that day is in the future.
Let me know if you have any questions.
Thanks
David Emerson
ReplyMine is very low – all other body functions normal except given Stiff Person Syndrome Dx and have to take Baclofen and Diazepam daily or my legs will lock up and become very stiff, very tight painful cramps. I can ride a bike, but anything that requires accuracy – throwing something like horseshoes, or skiing, I can no longer do after 53 years of a very active normal competitive life where I was very good at any of those activities. Dx was almost 2 years ago…I can ride bike, get around, but tightness, and lock-ups in tight spaces – muscular neurological disorder of unknown origin is what they say.
I am much more ambulatory than first onset…very strange ailment.
Monoclonal Protein level is 0.3 H
ReplyHi Daniel-
Several things. An M-spike of .3 is low. Yes, MGUS. According to the online discussion below, Stiff Man Syndrome is rare by itself. Even more rare with MGUS. However, the oncologist who replies in the discussion, Dr. Jason Valent may be someone to talk to.
I hope this helps. Hang in there,
David Emerson
ReplyDave,
I am a 48 year old male recently diagnosed with MGUS. My oncologist told me there was nothing I could do to improve my chances of it not progressing, but I find that difficult to believe. Can you point me to nutrition or other therapies that could help improve my chances? My M-Spike Score is .8.
I am having symptoms. Extreme fatigue and tingling in my hands/feet.
Hi RT-
I am sorry to read of your MGUS diagnosis. However I agree that you can follow evidence-based, non-toxic therapies to reduce your risk of MM. Please click the link below, look to the right of the page and click the blue button to watch the free webinar. The MGUS program provide those therapies shown to reduce your risks- nutrition, supplementation, lifestyle, etc.
Let me know if you have any questions.
David Emerson
ReplyI am now getting ready for a Bone Merrow Bopsy on Tuesday morning. Do I need to change my diet watch what I eat. I have MGUS
ReplyHi David-
Several things. First of all, I am sorry to read of your MGUS diagnosis. Secondly, your bone marrow biopsy will give you more information about your current status. The more diagnostic information the better. Lastly, studies document the ability for specific nutrition, supplementation and lifestyle therapies to reduce your risk of progressing to multiple myeloma.
Do you know your monoclonal protein aka “m-protein” number? Are you experiencing any symptoms? Yes, MGUS is supposed to be asymptomatic. However MGUS patients sometimes experience a little bone or nerve pain.
I don’t mean to sound nosey. I’m just trying to get a clear picture.
Let me know, thanks.
David Emerson
ReplyGood Morning,
Have the MGUS Dx and now monitoring going forward (was discovered because of an initial diagnosis of acquired angioedema!)
Feel well and in good shape on both accounts and numbers are all good.
What’s the word on receiving vaccinations…in particular the flu and pneumococcal vaccinations?
Any information you can provide would be useful.
Thanks,
Michael
ReplyHi Michael-
The issue of vaccinations is debated amongst MMers so I am not well versed about the issue with MGUS and SMM patients. Meaning, the main issue of debate is that the immune system of full blown MMers can be compromised. Therefore, is it better/worse to undergo a small about of live virus in order to reduce the risk of getting a larger dose of live virus.
The bottom line is that conventional medical doctors to recommend vaccinations though MMers debate the issue. I personally do not get vaccinations. I can say with any certainty if my not getting the flu in the past 20 years is a function of my anti-MM lifestyle or if it is chance.
I am sorry I can’t provide more specific info. Let me know if you have any questions.
David Emerson
ReplyHi Michael, maybe I can help you make that decision? I’m a retired nurse and was the NCOIC of the immunization clinic in the Army. After I lost a grandchild to vaccine injury, I began doing a LOT of research on the safety, etc of vaccines. It may help you to make a decision if you know some evidence based information. First, the most effective ANY vaccine is in producing immunity is at best 20-30%. So only 2-3 people out of 10 receive any immunity at all. 100% of the people who receive the vaccine are exposed to the virus and all the preservatives and heavy metals that are in the vaccine. It might also help you to know that out of all the vaccines in the world, the Flu Vaccine has more claims filed on it in the National Vaccine Adverse Event Reporting System. For me, it’s totally NOT worth the risk. Hope that helps.
ReplyHi Gerald-
Let me know if there are any questions you have about your MGUS diagnosis.
David Emerson
Survivor, Cancer Coach