I hear you. It's difficult to be in the sick, but not sick enough to be taken seriously
Member has chosen to not make this information public.
Member not yet following any Pages.
My MGUS was discovered in 2012. To date my M protein has remained low, but my light chain ratio and kappa free quant chains have slowly increased. I am slightly below the threshold for needing a bone marrow biopsy. My problems with fatigue, general malaise, frequent sore throats, chills, etc. began about the same time and have gotten much worse over the years. I 've had to reduce my hours at work to half time and I only go out when I have to. Very frustrating! My physician has not associated my symptoms with the MGUS. She diagnosed me with Myalgic Encephalopathy instead. But, after reading your question and the responses, I may bring it up to her.
My hematologist tells me MGUS is not a disease and does not require treatment. She says I simply have a 5% higher chance of developing Multiple Myeloma than the general population. I hope she's right because I've decided to stop the yearly follow up appointments.
@colleenyoung , Hi Colleen, Up-to-Date also recently stopped recommending GET and CBT.
@karina77 , Hi Karina, I'm afraid I can't answer your questions about IV therapy having never tried it. But, regarding your question about talking to your doctor I asked a very similar question on this forum about two weeks ago. After reading the responses, I've decided to handle it by emailing my doctor and giving her a heads up that I've read new information on ME/CFS that I would like to discuss at my next visit. I will tell her where to find the information so she can review it herself before the appointment.
I've learned that just showing up at a doctor's office with a handful of articles from the internet often puts the doctor immediately on the defensive. If you don't have email access to your doctor, you might try calling the office and leaving a message explaining your desire to talk about the subject when you next see her.
I don't know if this approach will work, but I've decided it's worth a try.
I hope you find something that works.
I agree it's harder for older people. We have mobility issues, hearing problems, vision problems, transportation problems and aren't readily familiar with newer technology such as computer terminals for checking in. We need someone to walk with us through the system and help us understand our options.