misha123
01-20-2001, 06:42 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.
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.
Sponsor
Shelala
01-25-2001, 12:25 AM
Misha123,
This might be a dumb question, but has your mother ever been tested for lymes disease?
This might be a dumb question, but has your mother ever been tested for lymes disease?
misha123
01-25-2001, 01:11 AM
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
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, 02:17 PM
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, 06:08 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)
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)
kat27
03-31-2001, 06:50 PM
Has she been tested for non-Hodgkins lymphoma?
Night sweats is one of the symptoms experienced. At least it was with my mother-in-law. She had known something was wrong with her for a couple of years. Went through numerous tests and doctors. They diagnosed it when it was in the FIFTH stage!
That is the last stage. At one time, one doctor suggested that she was a hypochondriac! She went through two years of grueling treatment and then passed away.
I guess if you don't have a textbook case or else a diagnosis doesn't just "jump-out' at a doctor then its too bad. You waste time and precious life. Hypochondriac---no, I don't think so.
Night sweats is one of the symptoms experienced. At least it was with my mother-in-law. She had known something was wrong with her for a couple of years. Went through numerous tests and doctors. They diagnosed it when it was in the FIFTH stage!
That is the last stage. At one time, one doctor suggested that she was a hypochondriac! She went through two years of grueling treatment and then passed away.
I guess if you don't have a textbook case or else a diagnosis doesn't just "jump-out' at a doctor then its too bad. You waste time and precious life. Hypochondriac---no, I don't think so.
misha123
03-31-2001, 07:01 PM
Kat,
Is there a single TEST for NHL? From what I've studied, the only way to conclusively diagnose NHL is through an actual lymph node biopsy OR finding the lymphoma cells in the bone marrow. Is there something that I don't know?
Are there any other tests that we can be doing NOW? My mom is going to INSIST on the PET scan, and if her doctor won't order it we are going to another doctor. I would have gone to another doctor MONTHS ago. My mom, however, is the world's most stubborn woman!
That, of course, is often a good quality, and I hope that it helps her to fight this disease. If only we can find it!!
Thanks again.
[This message has been edited by misha123 (edited 04-02-2001).]
Is there a single TEST for NHL? From what I've studied, the only way to conclusively diagnose NHL is through an actual lymph node biopsy OR finding the lymphoma cells in the bone marrow. Is there something that I don't know?
Are there any other tests that we can be doing NOW? My mom is going to INSIST on the PET scan, and if her doctor won't order it we are going to another doctor. I would have gone to another doctor MONTHS ago. My mom, however, is the world's most stubborn woman!
That, of course, is often a good quality, and I hope that it helps her to fight this disease. If only we can find it!!
Thanks again.
[This message has been edited by misha123 (edited 04-02-2001).]
axe
04-30-2001, 10:21 AM
Originally posted by misha123:
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.
The first thing I would be thinking of in a 71yr female with night sweats and anaemia is a haematogenous malignacy such as lymphoma. Has she lost any weight? Does she have large lymph nodes (glands) in her neck, under her arms, in her groin?
The CT scan if done over the abdomen may of seen some para-aortic nodes if this is the case. I think if she has enlarged nodes she should have an FNA (fine needle aspirate). She may have a lymphoma - there are many many types - low grade are incurable and slow growing, high grade are rapidly fatal - but curable if treated with chemotherapy.
Good Luck
Kind Regards
R.
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.
The first thing I would be thinking of in a 71yr female with night sweats and anaemia is a haematogenous malignacy such as lymphoma. Has she lost any weight? Does she have large lymph nodes (glands) in her neck, under her arms, in her groin?
The CT scan if done over the abdomen may of seen some para-aortic nodes if this is the case. I think if she has enlarged nodes she should have an FNA (fine needle aspirate). She may have a lymphoma - there are many many types - low grade are incurable and slow growing, high grade are rapidly fatal - but curable if treated with chemotherapy.
Good Luck
Kind Regards
R.
axe
04-30-2001, 10:24 AM
Originally posted by misha123:
Kat,
Is there a single TEST for NHL? From what I've studied, the only way to conclusively diagnose NHL is through an actual lymph node biopsy OR finding the lymphoma cells in the bone marrow. Is there something that I don't know?
HL, and NHL are histological diagnosis only. That means a node needs to be biopised and looked under the microscope, and stained with various stains. Sometimes finding an accessible node can be a problem and ultrasound or CT guided biopsies are required.
HL would be pretty unlikely in your mothers age group.
Regards
R.
Kat,
Is there a single TEST for NHL? From what I've studied, the only way to conclusively diagnose NHL is through an actual lymph node biopsy OR finding the lymphoma cells in the bone marrow. Is there something that I don't know?
HL, and NHL are histological diagnosis only. That means a node needs to be biopised and looked under the microscope, and stained with various stains. Sometimes finding an accessible node can be a problem and ultrasound or CT guided biopsies are required.
HL would be pretty unlikely in your mothers age group.
Regards
R.
misha123
06-09-2001, 08:51 PM
My Mom has no swollen nodes. The primary doctor turned her over to an infectious disease doctor. No results. Rheumatologist was sure she had vasculitis - he was wrong.
Skin biopsy on both legs were negative. They have sent her back to the infectious disease specialist. He is the one who put her on prednisone for no reason. The prednisone has just been masking her symptoms - first day without prednisone her temperature was 101.8 degrees.
About the only test that hasn't been done is the PET scan.
Thoughts, anyone?
Oh, almost forgot - she is feeling weakness in legs, and is so tired that just walking to the mailbox is almost more than she can do.
Her doctors are incompetent - would appreciate your ideas, because I cannot convince her to seek a second opinion.
Thanks very much.
misha123
Skin biopsy on both legs were negative. They have sent her back to the infectious disease specialist. He is the one who put her on prednisone for no reason. The prednisone has just been masking her symptoms - first day without prednisone her temperature was 101.8 degrees.
About the only test that hasn't been done is the PET scan.
Thoughts, anyone?
Oh, almost forgot - she is feeling weakness in legs, and is so tired that just walking to the mailbox is almost more than she can do.
Her doctors are incompetent - would appreciate your ideas, because I cannot convince her to seek a second opinion.
Thanks very much.
misha123