Doctors mystified, son worried - Rare Disorders Message Board

misha123 · 01-20-2001, 03:42 PM

My mom is 71 yrs old, in good general health.Her symptoms since May 2000 have been and continue to be:
anemia (hematocrit 25-27)
chronic fever (100-101)
night sweats
SED rate 122-150

Tests performed:
CBC
iron studies
colonoscopy
ANA titer
Echocardiogram
TE Echo (2)
CT scan of head
CT scan of chest, abdomen and pelvis
bone scan
Temporal artery biopsy
Gram negative tests
Bone marrow aspiration and biopsy

All results negative or inconclusive

Diagnoses and Treatment: (all wrong and useless)
1. Infective endocarditis - IV vancomycin for 6 weeks via catheter - no change in symptoms ("Suspected" vegetation on mitral valve was perhaps only natural thickening due to age). Infectious disease specialist thinks the skin bacteria present in the culture was due to lab contamination, and was not present in my mom's blood.

2. Temporal arteritis (even though the temporal biopsy was inconclusive) - prednisone - temporarily MASKED symptoms - as dosage decreases, sweating and fever return - SED rate reduced to 122 - hematocrit still 27, fever and sweats are back

Meanwhile, the prednisone side effects are: near blackout spells, tingling, headaches, heart palpitations. Two trips lately to the emergency with blackout spells.

Her syptoms continue and we are all worried and angry. Does anyone have any ideas?

Thanks very much, and please excuse the lengthy post.

Shelala · 01-24-2001, 09:25 PM

Misha123,
This might be a dumb question, but has your mother ever been tested for lymes disease?

misha123 · 01-24-2001, 10:11 PM

Quote:

Originally posted by Shelala:
Misha123,
This might be a dumb question, but has your mother ever been tested for lymes disease?

Shelala,
Thanks for your response. Yes, she was tested for Lymes, also cat scratch fever and a lot of other diseases like that.
This week she is having a gallium scan and an upper endoscopy. Any other ideas??
Misha

kat27 · 03-31-2001, 11:17 AM

Has she been tested for lymphoma? It took two years before a correct diagnosis was made on my mother-in-law. By that time she was in the last/fifth stage non-hodgkins lymphoma. She had some of the same symptoms your mom has. Especially the night sweats. She lived two years after numerous chemo treatments. We live in an area where they have excellent research/hospital facilities,yet this condition was not found until it was too late---after numerous tests and trips to the doctors over the previous years.

misha123 · 03-31-2001, 03:08 PM

Thanks, kat27, for your reply. It has been a year now since the symptoms appeared. My research has convinced me that my mom does indeed have lymphoma. Her doctors suspect this as well, but I am very uncomfortable with the "wait and see" approach that they have adopted. I am pushing very hard for a PET scan, because it seems that this scan can show tumors 2-3 months before CT scans or MRIs can see them. However, even though there are 2 PET sites here in Birmingham, these doctors have no experience with them, and therefore are wary. Also, the scan sites are not at THEIR hospital.
What finally led to the conclusive diagnosis of lymphoma in your mother-in-law? Do you think that there is anything that the doctors COULD have done to hasten the diagnosis?
Thanks very much, kat!! Any advice will be so helpful.
Michael(misha123)