question for oldtimers

Hi @janetlen, I’m a mentor in the Blood cancers and Disorders support group and very involved in the forum for the past 4 years. While I think I understand what you’re saying, I don’t really feel anyone coming here for answers, after being told ‘they’re fine’, have a desire to be ill.

These are generally people who have something going on and searching for answers. They may feel brushed off by their doctors for having some ‘nebulous’ symptoms that don’t fall into a definitive diagnosis. These members may not be accepting of what their physician’s are telling them because they know their bodies better than anyone…and not willing to rest until they find the right answer.
I had similar experience with my doctor with whom I had a great relationship. But she failed, 3 weeks in a row to listen to what I was telling her…that I’d never felt this sick in my lifetime of 65 years. Something is wrong! I kept getting dismissed until blood work, 3 weeks later, showed I had acute myeloid leukemia and about 24 hours to live. So, had I accepted her answer, I’d be dead for 5 years and not be able to answer this question now. 😉

This forum has proven to be a lifeline to many members who just need someone to listen and to care. It’s a safe place to come and talk with other people who may be experiencing the same symptoms.
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I joined the forum last year due to long covid, and received a lot of useful info. I cross topics in my discussions because I have MGUS, celiac, TBI (30 years ago), osteoporosis, hypothyroid, and a few other collections. None of these cause me problems. I'm a retired research scientist so love learning and sharing information. Are there people that are trying to find out what is wrong and can't get diagnoses or are dismissed by doctors? Yes. Are some emotionally struggling? Of course. Regarding diagnoses, I am a 69 yo woman that bikes 5000-7000 mi/year and got a lump "down there" (nasty bike saddles). MRI doctor just diagnosed a normal pelvis with some arthritis in lower spine. So...I got the MRI, found images with the lump and attached peer-reviewed research papers on ishial hygromas (they mostly hit male pro cyclists) in women athletes and sent that back to my doctor. No response but I finally got an appt with a sports medicine doctor, who sent me off for an ultrasound that didn't show a cyst because I didn't have one, so she decided it was all in my head (might work if I was a guy [kidding]). So after a year I got an appt with a gynecologist interested in sports medicine who viewed the MRI and signed me up for pelvic PT (also highly recommended for ED, post pregnancy, and incontinence). Now the lump and I are fine biking. My interest in medicine started at 13, my appendicitis was diagnosed as constipation, with resulting ruptured appendix and peritonitis. I am a doctor, just not of medicine. I've lot a few friends that have accepted misdiagnoses, so better to search for answers than to hope something will go away.

I have to agree with you. I always am seeking good information. Sometimes I wonder if I’m in the right group. I hope we can get back to positive solutions and information.

So do I. Few doctors want to dig deeper for better info. “0h it’s only blood cancer, not anything we can take out to cure”!

Yes, I am in a low point today. Had an Aransep 300mg injection yesterday but no pep even today. Maybe overcast day or just wearing down from disease! Nurse never discussed lab results. Guess we just guess and hope for best.

@mkt24 ugh. I’m sorry. I sometimes am driving home from an appointment and realize we didn’t discuss something I have questions about. I call them. My fault, their fault…doesn’t matter. Sitting with questions is not good for me. I need reassurance, a plan, or both. I am that squeaky wheel until they call me back. I have also utilized the Cancer Center’s social worker to run interference for me.
I hope you feel better today. Have you had success getting information from your provider in the past?