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Anyone Else with Waldenstrom's and COPD?
I was diagnosed in February with Waldenstrom's. Here's my blood work just before the bone marrow biopsy. My IgM count last month was 634.
CBC DATA:
Test name Result units Ref. range
WBC 5.57 K/cmm 3.6 - 11.2
RBC 4.25 M/ul 4.10 - 5.70
HGB 14.0 g/dL 13.1 - 16.8
HCT 41.1 % 38.2 - 48.4
MCV 96.7 fl 80.0 - 100.0
MCH 32.9 pg 27.0 - 34.0
MCHC 34.1 g/dL 33.0 - 36.0
RDW 12.6 % 11.8 - 15.1
PLATELET COUNT 151 K/cmm 150 - 400
MPV 9.6 fl 7.5 - 11.2
The VA has been monitoring my IgM proteins since 2018 and called it MGUS. I did not experience symptoms until 2022 when I lost 40 lbs over the year and experienced extreme fatigue, and increased shortness of breath during this time. They then did a biopsy and determined that I had Waldenstroms.
They are choosing not to treat the Waldenstroms at this time and attribute the weight loss, fatigue and shortness of breath to my COPD.
Anyone else with COPD & Waldenstroms? Are there any other tests they can do to determine if my symptoms are due to COPD? Or are they due to Waldenstroms?
Thanks
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Always, Always get a second opinion and request referrals. Research some of the well known Medical Centers, Mayo., John Hopkins, Cleveland Clinic, Temple and Duke. I live inn a Medical-Care Challenged State and had to leave the State..... Duke is a great place to start. You will find a wealth of knowledge and people more than willing to help you, plus you can even self-refer. The VA physician should be willing to assist you with this......the least he can do is give you a referral. If he won't go the the Quality Assurance/ Risk management department and lodge a complaint.
Thanks for the reply to an old thread kndaustin71. I made a self referral appointment with Mayo in Rochester in October, but cancelled due to a move into a senior care facility and the confusion resulting from the Mayo scheduling. I plan to make another appointment in the spring when the weather is nicer. Hopefully, I won't be experiencing worse symptoms than I'm currently having at that time. My IgM has risen from 614 to 820 over the last year. Hope there's still time.
And I do plan to ask for assistance from a doctor this time around.
Mike - not sure where you live but if your looking at Mayo in Rochester, Cleveland Clinic could be just as convenient. Rochester is a bear to get in and out of by air. The Social Worker at the Senior Care facility could also be of some assistance in arranging transportation and certainly the Director of Nurses could jump in there. Another resource whould be the Medical Director or the Dr that is over-seeing your care at the facility.