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MGUS Symptoms: What symptoms did you experience?
Blood Cancers & Disorders | Last Active: May 15 3:30pm | Replies (72)Comment receiving replies
Hi Everyone,
Thank you so much for your replies. I have an amazing doctor at Sloan in Manhattan. Myeloma and plasma disorder specialist. Everyone at Sloan has been amazing. I spoke to him about everything. I did meet with a rheumatologist who does not believe that I have any auto immune conditions. I was surprised bc my mom and brother have many. He sent me for a bilateral hip xray to check for osteoarthritis. I received the results on the portal. Does not indicate OA but I don't understand the medical terminology and he hasn't called me as of yet to discuss. It says- small enthsophytes along bilateral iliac crest margins. Of course I googled the heck out of that but want to hear from the rheumatologist. He also believes that the pain in my hips could be from the increased levels of protein in my blood due to MGUS. I have to run all that by the oncologist a Sloan.. I go next month for a bone marrow biopsy, pet scan and bloodwork. I also wonder (which I guess doesn't really matter) if my MGUS is 9-11 related. I was there the day of and for 5 years after. MM is one of the most common cancers.
I also have not shared any of this with my family bc I feel that there's no point in upsetting or worrying them until I have to. What do you think?
Thank you so much,
Jeannie
Replies to "@kayabbott @allstaedt57 @pmm Hi Everyone, Thank you so much for your replies. I have an amazing..."
You are going through so much. Not knowing is hard. My baseline biopsy helped as well as all the other test results. Will it ever morph into MM, how will loved ones and friends react? I hope you can escape the stresses. Eight years ago I got the MGUS diagnosis months before my little brother died of pancreatic cancer. I started collecting autoimmune diseases 50 years ago (a sucky hobby). It is unfortunate to have your rheumatologist dismiss that rather than test. Pain just from M proteins seems a stretch. It would be good to get a treatment plan for the enthsophytes. I get muscle spasms associated with attachments on my left illiac crest but control that with stretching exercises from PT. Where does MGUS come from? I doubt we will ever know. What causes plasma cells to mutate? Being at ground zero was toxic partly because the pH from concrete dust was about 11, similar to breathing Drano. The airborn asbestos wasn't as problematic because the the low concentrations and it not was the nasty (Libby Montana) variety, but still bad. My coworkers flew over ground zero and sampled the air; USGS data was published online before the EPA screwup.
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@jeannie215
It sounds as though you have a trusted medical team. It takes some time to assemble the right combination so that’s good.
The assessment of hip pain being related to M protein in the blood by your hematologist is new to me. I’d be interested in how those dots might be connected. Are all your clinicians able to share electronic medical records? It’s so helpful if they all use the same system.
9-11 exposure…I’m so sorry. Just the trauma of watching it on TV was terrifying and heartbreaking. I can’t even imagine actually being there during or after. I’m so sorry.
The bone biopsy will give your docs a lot of information and will enable a definitive diagnosis.
It’s hard to sit with all this and the anxiety. I hope you do have a close friend or family member to whom you can confide. We all need that support.
Let us know what you find out.
Hugs.
Patty