Understanding Pre-Myeloma (MGUS)

[@hadleyhasemeier5922]

LIKE THE STYLE OF PRESENTATION BY THE DOCTOR. VERY CLEAR METHOD!

[@victoriabutler5628]

I'm tired of MGUS being brushed aside. I have MGUS, not myeloma and have extreme bone pain, fatigue, and one infection after another. I just had a sinus infection, shingles and a uti all in a 3 week period. I do not live a normal life and had to leave my job. I've read posts of people with MGUS who are suffering in the same way. Many of us are severely immunocompromised. And yes it is due to MGUS.

[@Nirobiscloset10]

Me too, change my whole life.

[@BritneyNicoleandMyeloma]

I am so happy to see this! I have terrible symptoms and they just found the M-spike. The rheumatologist all but brushed it aside and said it couldn't be responsible for my symptoms. I am sure if I didn't press the issue he wouldn't even have the M-protien typed.

[@livelikeyouareliving3581]

I agree! I too have MGUS and I am seeking other individuals who have it so that we can discuss what works for them, what does not. I am trying to learn as much as possible.

[@JD202]

I just got diagnosed with MGUS. Im 34 year old male. I have been chronically ill for 10 months now would love to chat with some people who are in a similar position as I am

[@denniscircawdm]

Get a doctor who WILL pay more attention or send you to the right specialists! You have to be a strong advocate for yourself if you feel you are being "brushed aside!"

[@BritneyNicoleandMyeloma]

A m-protein was found on my electrophoresis. I had a value of .27 gm/dL which I know isn't "bad" in the way of myeloma or my risk to progress. However, I just turned 28, so that gives me many years to progress. We also haven't characterized the M-spike yet so we really don't know which antibody it is or if there is an outside cause.... I am pretty calm after researching but I am VERY symptomatic. I have weird pains in my ribs, back, and legs and even my elbows... I guess we will find out soon. I just wish more people were studying symptoms in younger people and MGUS. And every study I've seen involved older folks (40 or older).

[@JD202]

Britney Nicole i have some issues now too

[@denniscircawdm]

Get a doctor who knows what to test so you can KNOW what your other values are, especially if you have bone pain and other chronic symptoms!

[@NaturesFairy]

Thank you for making this video.

[@sherry8288]

I have MGUS & started on LDN (low dose naltrexone) 3 months ago. The bone pain in my hips & lower back has gone away. I have heard of people with MGUS staying on LDN for years and not getting myeloma. It’s giving me hope.

[@LisaRichards_123]

I went on it for a few months, and it did nothing for me, so I went off

[@LisaRichards_123]

I had mgus and osteoporosis at 40, Lupus, Sjögren’s, and I’m in my 60’s and I have neuropathy.

[@deth2allbutmetal74]

Google Ehlers Danlos Syndrome

[@The391956]

I don't want to go back to work and work till I drop dead deal, but it seems only wheelchair persons get disability and cancer don't count as a disability. That sucks.

[@stevenoc5403]

My 76 yr old mother has myeloma, she's had stem cell treatment. Im 57 have mgus, my 51 yr old sister has mgus. We all suffer with pain , fatigue etc my specialist is knowledgable but when seeing my GP/ he/she , never get to see same one ,DWP seem to think there are no side effects . Seem to fight aloosing battle.

[@thomasfraser9072]

Was your father ever stationed at Camp Lejuene? MGUS is presumed to be related to the toxic water that people drank at Camp Lejuene between 1952 and 1987

[@AatiraSNair]

Sir my mom has m protein .7 Kappa 39 Lambda 30 ratio normal Ig G mgus She has orthostatic hypotension Bp 60 /40 sitting 50/30 standing What can be done to increase the Bp

[@The391956]

Does every MM patient have mugs illness first

[@ProAssassin63]

epic video, helped alot!

[@susanb7484]

i'm 61 and in Feb. was diagnosed with breast cancer turn out I have stage 4, but kidney dr did test for multiple melyoma and thinks i mgus i have symptoms everyone here has stated . m spike was .78 kappa 689 protein ratio kappa-lamba was 1.79 pet scan shows lesion everwhere in skeleton, now i am seeing hematologist Aug. 30th

[@thomasfraser9072]

Were you stationed at Camp Lejuene? MGUS is now presumed to be caused by the toxic water that was there.

[@LisaRichards_123]

I have MGUS peripheral neuropathy. It is frustrating that I can’t get anything for pain.

[@anitapangan6690]

Read up. on the PEA Supplement it really help with pain.

[@velvet_esc_ape]

Respected Sir, I am from India , I have been recently diagnosed with oestopoikiliosis and now at undertreatment with orthopaedic doctor, but at now I have recently visited to endocrinology clinic and doctor advised me to get a skeletal survey done. The doctor having confusion in the previous diagnosis Please advise me treatment. Please share me your contact details ( email etc.) So that I will approach you for further treatment. I am just 21 yrs old

[@sianmegginson8110]

Whats the cause of MGUS?

[@denniscircawdm]

Unknown.

[@yxnone9771]

Does anyone with Morphoea have MGUS?

[@galejelics8019]

My MGUS keeps going up. Started with .3, .6., .8 and .9 g/dl m spike. I have osteopenia. What drug did you prescribe to help bone loss? My hematologist is worried that my m spike will keep rising in a few years and then they will have to put me in a critical trial at 1.5 g/dl. Is this true? My K/L ratio fluctuates from 1.76 and 2.0 which is a little high. Should I visit an MM specialist?

[@LisaRichards_123]

I can’t understand why a doctor hasn’t put you on calcium for bone loss and for bone loss. You should be asking a doctor, these questions, not asking the Internet.

[@Isabelitamellamo]

Great, totally demoralizing for those with Mgus in their 40s. Quite unsensitive

[@melrosemiss]

Don’t you think it is better to know what may happen than to be hit with it out of the blue later? I am grateful I know. Helps me get all my ducks in a row, so to speak.

[@Iwoasasaned]

Especially if it’s not taken serious by your doctors. I am 43 with MGUS and doctors don’t think it is necessary to look more into it 😕

[@Isabelitamellamo]

@@melrosemiss what do you mean? Get ready to die?

[@denniscircawdm]

Would you rather a doctor LIE to you??

[@Isabelitamellamo]

@@denniscircawdm He says it in a very insensitive way.

[@achur4u]

Did anyone research on curcumin

[@denniscircawdm]

Yes, and other anti-oxidants. CURCUMIN is just one of many spices, foods, and herbs on an anti-inflammatory diet that can help. Likewise getting off sugar and meat but fish.

[@velvet_esc_ape]

Respected Sir, I am from India , I have been recently diagnosed with oestopoikiliosis and now at undertreatment with orthopaedic doctor, but at now I have recently visited to endocrinology clinic and doctor advised me to get a skeletal survey done. The doctor having confusion in the previous diagnosis Please advise me treatment. Please share me your contact details ( email etc.) So that I will approach you for further treatment. I am just 21 yrs old

[@velvet_esc_ape]

Respected Sir, I am from India , I have been recently diagnosed with oestopoikiliosis and now at undertreatment with orthopaedic doctor, but at now I have recently visited to endocrinology clinic and doctor advised me to get a skeletal survey done. The doctor having confusion in the previous diagnosis Please advise me treatment. Please share me your contact details ( email etc.) So that I will approach you for further treatment. I am just 21 yrs old