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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (942)

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@lynne756

My MGUS was also found by going to a rheumatologist after a year of suffering with joint and bone pain - he found the m spike. Told me it was "probably nothing" and sent me off to see my hematologist/oncologist of many years ago since I had thyroid cancer in 2007....and the dx was MGUS. Although my hematologist doesn't think my bone/joint pain is from MGUS...but says, maybe? I have had extensive testing that I really don't understand. I had the full body xray which did show any lesions but the doctor said it showed lots of degenerative changes and if he was looking at the xray and had to guess my age, he would guess much older than my age of 55 (great...)...I had bone marrow biopsy...Kappa Light Chain IgG - I was anemic (no ferritin stores, had to have 2 infusions, good now, but now I have low platelets). I have no IgA - apparently my body doesn't make it - explains alot - lot's of ear infections, UTIs....anyway, I see my hematologist on Monday....making my list of questions. I am full of aches every day,,,I am so fatigued...I push myself to get through everyday. Like I said, it was a year before MGUS was found. I almost lost it when one doctor suggested I start meds for anxiety - bc he thought this pain was coming from my thoughts as our mind / body connection is strong. While I believe that is true....please....there is a something happening to my body! Nobody was finding anything. My GP and the rheumatologist decided my pain should be treated like fibromyalgia pain - and they put me on duloxetine (similar thought process to what the former doctor was trying to say but delivered in a way that I could accept, understand - makes a world of difference). Duloxetine has helped, a bit. All the best to everyone here.

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Replies to "My MGUS was also found by going to a rheumatologist after a year of suffering with..."

Wow, you just told my last 9 years, started out heat intolerance, dehyd, ESS diag after 9 months of trying to get them to understand it wasn't in my head, sudden weight loss after few years struggling with digestion and gulping milk of magnesia, killed off digestive and restarted it with FODMAP diet, after 1st C19 moderna Vacc arthritis in left hand was first thing to start having real issues, nerve pains like twisting pinching in random locations lasting from few sec to several mins at a time, booster 1, did not do booster 2, am almost blind from light sensitivity to blue and white, reds yellows don't nearly as much, driving at night is real tense with migraine following, bright sun and day sky without shades triggers same, almost deaf in right ear from tinnitus, the list goes on, been on 2400 mg of neurontin for prophylactic for migraines, tried discontinuing on slow taper 3 years ago and that's when 1st experienced the twist pinch pain that did not respond to mechanical message, but if I lightly brushed a fingernail across the area of pain, even a few minutes between spells of pain, it was like I brushed it with a fire, burning pain flash triggered by light brush of an area the size of this . it's is bizarre, but now it pokes through the neurontin, now after my 2nd shingles booster triggered a full day of bone pains in both forearms, told doc to please test me for inflammation markers, came back pos developing light kappa, now raised level has doubled in last 2 months, low D Calcium ok, have to do imaging forearms and shin bones, but told doc to do more in depth testing genetically and all, she's on vaca til 23rd so I wait, retired mechanic benzene and chlorinated hydrocarbon exposure for over 25 years, before that I started at 13 instead of high school 5 years industrial refinishing, sandblasting and painting, we used to wash face and arms with laquer thinner, but heavy metals is fine, and am just starting on this, january was 1st test I had, Deacon Mitch.g

Have you tried Pregablin? I have Trigeminal Neuroalga, and the pain in my mouth and face was severe. Pregablin was the only med I could take, and still am taking.
Gina5009

You sound like me. I am in my 50’s and have osteoarthritis everywhere and diagnosed with fibromyalgia. I’m still in testing stage and had protein in my blood and high kappa and ratio. I’m eager to know what hematology will tell me.