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Does anyone else have MGUS?

Blood Cancers & Disorders | Last Active: 9 hours ago | Replies (727)

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@migunner

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

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Replies to "Wow, you just told my last 9 years, started out heat intolerance, dehyd, ESS diag after..."

Oh my goodness - heat intolerance - that one has been a biggie for me too! I have had that! I was told it was menopause but that happened long ago.... then it was blamed on a med that they gave me for the "fibromyalgia" pain and stiffness (duloxetine)... So they added hydroxyzine to reduce the sweating which also does help with the anxiety that is now through the roof...but I am concerned about too many meds. I take gabapentin as it is for an unrelated condition (trigeminal neuralgia). Like you, I started having some tingling and numbness, and even weakness in my left upper extremity last fall. Hematologist said he didn't think related to MGUS, sent me to my neurologist---did an EMG, which showed nothing --- neurologist said must be from something also. Since then I am feeling tingling in both hands every morning. My biggest symptoms are fatigue and all over body pain . But I get up and go to work everyday. I have a physical job - Occupational Therapy. I am wiped out by the time I get home. I have to be careful about how much I complain or vent when I get home bc my family doesn't understand how much I am pushing through my day. I am barely getting through. As for benzene exposure which my doc also inquired about - no idea! I was raised in a suburban NJ town....lots of industry around us....a dump not too far away....I was born in the 67 and was running around that town in the 70s and 80s. Who knows what I got exposed to? People scoff at too many laws today - but back then you could throw anything away. Now you can't. And here we are. We are an example of why. Just one example. Anyway....so many things to discuss, right? All the best to you on this journey. xo