First time getting an outside opinion....

Handyman018
Handyman018 Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Thanks for taking the time to read this. My name is Charles and I'm a father of a 12yo girl and 5yo boy. My wife and children rely on me heavily as a breadwinner at home. 

It all started about 6 years ago with a pain in my left side abdomen. I had numerous tests and scans and even a colonoscopy which all failed to result in any diagnosis or treatment. The doctors involved just shrugged and said thewas nothing more they could do and wished me luck. I got so sick from the pain and fatigue that i was bedridden for several months. Eventually the ordinal and fatigue subsided enough for me to function but the pain remained constant for the past 6 years. 

Over the course of the past 3 years my symptoms have gotten worse as my body seems to be eating itself alive. I've had pet scans which produced no diagnosis and every other kind of test and scan including pcr testing for autoimmune disorders which again produced no diagnosis. 

2 years ago my left acromyclavicular joint disintegrated for unknown reasons and i had to get surgery to repair it. Shortly after that i started to notice a lump in my throat and pain which i tought was related to the surgery however it remained constant even to this day. 

Shortly after that i had my tonsils removed as the possible cause for the swollen glands but after removal biopsy produced no explanation. 

About a year after the double tonsillectomy i got bleeding in my left eye and lost the central vision. My retinologist who did the exam and follow ups after surgery said that there was damage to my eye consistent with lymphoma considering my age and medical history. 

I've tried numerous times to get a biopsy of the lymph nodes which have been swollen and painful now for over 3 years and my symptoms have gotten much worse. My pain and fatigue level is now so great that all i can do is lay in bed and take ibuprofen as i refuse to take pain meds. I'm barely able to work and risk losing my job and home. 

My biggest fear at this point is that because so many doctors and specialists have signed off on me being healthy that none will perform a biopsy as a diagnosis of lymphoma at this point would certainly mean lawsuits against numerous prominent doctors who refused numerous times to biopsy my swollen nodes. 

I can feel my body slowly breaking down and it feels like I'm dying but doctors don't seem to care. Any advice would be helpful. 

Comments

  • PBL
    PBL Member Posts: 366 Member
    #2
    Odd

    Charles,

    I am sorry for your long litany of ailments and inconclusive diagnostic tests. With negative PETs, you may be barking up the wrong tree by posting on a lymphoma patients forum... 

    I assume you have been assessed by a rheumatologist further to the acromyoclavicular joint episode. What did s/he have to say about that? Have you ever been referred to an internal medicine specialist? Has anyone considered Lyme disease a possibility? Just thinking aloud here, as I do not hold any medical degree.

    Just a word of caution : ibuprofen and paracetamol are over-the-counter painkillers, but that does not make them innocuous. They can cause serious kidney and liver damage with excessive dosage or prolonged use. Organ damage can explain fatigue. If you do not currently have a trusted PCP, I suggest taking your complete medical records to one and openly discussing your history and current situation, including all medications and supplements, diet, alcohol intake etc. so that they have a clear view of where to look and what to look for.

    I hope this helps. Do keep us posted.

    PBL

  • Handyman018
    Handyman018 Member Posts: 2
    edited June 2018 #3
    PBL said:

    Odd

    Charles,

    I am sorry for your long litany of ailments and inconclusive diagnostic tests. With negative PETs, you may be barking up the wrong tree by posting on a lymphoma patients forum... 

    I assume you have been assessed by a rheumatologist further to the acromyoclavicular joint episode. What did s/he have to say about that? Have you ever been referred to an internal medicine specialist? Has anyone considered Lyme disease a possibility? Just thinking aloud here, as I do not hold any medical degree.

    Just a word of caution : ibuprofen and paracetamol are over-the-counter painkillers, but that does not make them innocuous. They can cause serious kidney and liver damage with excessive dosage or prolonged use. Organ damage can explain fatigue. If you do not currently have a trusted PCP, I suggest taking your complete medical records to one and openly discussing your history and current situation, including all medications and supplements, diet, alcohol intake etc. so that they have a clear view of where to look and what to look for.

    I hope this helps. Do keep us posted.

    PBL

    I've been tested for lyme

    I've been tested for lyme disease and the pet scans were showing some of my lymph nodes as hot but they just dismissed itand said i must have an infection even though i had no fever or elevated white cell count. Even with prolonged swelling of my lymph nodes in the side of me neck and collarbone for over 2 years i cannot get a doctor to biopsy one of them even using fine needle aspiration. I've been told several times that it's too risky of a procedure and no doctor will do it. Everything I've read about swollen lymph nodes says that when lymph nodes are swollen for as long as mine have with all of the other systemic symptoms that a biopsy is standard. What am i doing wrong? 

    P.S. Why would i not post this in a lymphoma discussion? I'm looking for advice regarding my lymphatic system issues. I also didn't describe all my most lovely recent symptoms such as loose stool for the past 4 months, fever, chills, sweating, red patches on my skin, headaches, double vision, pain in all of my joints and muscles when when resting. I've been with the same pcp for 25 years and about 2 dozen specialists from infectious disease, retinologist, rheumatologist, several ents, hematologist, dentist and about 100 visits to my pcp. I've also been in bed the last two days because i can't eat and I'm too weak to get up and my lymph nodesare so swollen i can barely swallow. Went to the emergency room and they told me I'd need to see an endocrinologist or rheumatologist. I called several and the earliest appointment is 2 months away. Which is why i posted this topic. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited June 2018 #4
    Handyman018 said:

    I've been tested for lyme

    I've been tested for lyme disease and the pet scans were showing some of my lymph nodes as hot but they just dismissed itand said i must have an infection even though i had no fever or elevated white cell count. Even with prolonged swelling of my lymph nodes in the side of me neck and collarbone for over 2 years i cannot get a doctor to biopsy one of them even using fine needle aspiration. I've been told several times that it's too risky of a procedure and no doctor will do it. Everything I've read about swollen lymph nodes says that when lymph nodes are swollen for as long as mine have with all of the other systemic symptoms that a biopsy is standard. What am i doing wrong? 

    P.S. Why would i not post this in a lymphoma discussion? I'm looking for advice regarding my lymphatic system issues. I also didn't describe all my most lovely recent symptoms such as loose stool for the past 4 months, fever, chills, sweating, red patches on my skin, headaches, double vision, pain in all of my joints and muscles when when resting. I've been with the same pcp for 25 years and about 2 dozen specialists from infectious disease, retinologist, rheumatologist, several ents, hematologist, dentist and about 100 visits to my pcp. I've also been in bed the last two days because i can't eat and I'm too weak to get up and my lymph nodesare so swollen i can barely swallow. Went to the emergency room and they told me I'd need to see an endocrinologist or rheumatologist. I called several and the earliest appointment is 2 months away. Which is why i posted this topic. 

    Plight

    Handyman,

    With PBL, I cringe at your long litany of symptoms, symptoms in search of a disease, or perhaps an assortment of diseases.

    I am certain that PBL was not questioning your welcome here, but rather saying that a truly vast array of testing has reasonably ruled out lymphoma. 

    Several PET scans that the radiologist did not view as suspicious, the negative biopsy of the tonsils, two dozen appointments with specialists, 100 trips to your PCP......  Most importantly, you listed having seen a hematologist, who if even remotely competent should have zeroed in on any blood diseases if there was significant evidence in that direction.

    I must say that you have me stumped; I have not the remotest idea.  I have known people who had suspicious nodes for years and who then did test positive for lymphoma, but such is uncommon, and they did not list half the medical tests that you have had.

    "The same PCP for 25 years ?" I do believe that that would be the first thing I would change: my PCP. What you describe is hardly "health care."

    I cannot make sense of the refusal to do a biopsy. I just honestly cannot imagine why such an assortment of doctors would refuse this, any one of whom could have requested it.     I wish you luck, but cannot relate anything helpful beyond that,

    max

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #5
    A few non professional comments

    Sounds to me like you certainly have a serious health issue but it does not sound like lymphoma. First off most people agree lymphoma swollen nodes are painless. Secondly Lymphoma would have almost certainly advanced to a crisis stage in 5 years. My non-professional guess is that you have either a chronic infection or a parasite. I would guess Lyme disease, toxoplasmosis or some similar condition. There are many tick and mosquito born infections and parasites out there.I suffered from toxo as a child and your symptoms seem similar. My nodes were swollen and painful. I had intermittent fevers, aches and pains.Many doctors have never seen Toxo. Lyme disease is tricky to diagnose and several tests are often required. I hope you find some relief. Best of luck. Remember I am not a doctor and this is just my observations based on having had both lymphoma and toxoplasmosis and several of my wifes familiy members suffering with Lyme disease. Physician are trained to go after the most obvious probable cause. If I were you I would ask for another Lyme test and a toxo test. better yet you may want to see an entirely different doctor and present your symptoms without comment to see what they come up with. Good luck.

  • PBL
    PBL Member Posts: 366 Member
    #6

    A dermatologist might know what to make of these, and possibly take a biopsy, since your lymph nodes seem inaccessible. You may want to make an appointment with one working in a hospital that also has a hemo-onc department.

    With the extensive testing you have already had, I suppose a sonogram was done at some point to look at lymph node architecture. Lymphoma would likely have disrupted that, and the report would state something along the lines of "abnormal architecture".

    PBL

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