I was sent to a hematologist recently by my primary care doctor because I have all the classic symptoms of lymphoma and my labs suggest it as well. They are:
Itchy legs.. from deep within and every day
19 lbs. weight loss in 4 months... almost 14% total body weight
swollen painless lymph nodes in my groin
shortness of breath
chills and sporatic fever
pain in my lower back
and more but not sure if they are related
I was seen by the nurse practioner, not the doctor, and she seemed very thorough. The doctor came in for the final minutes of the visit and right off she said she is not convinced it's lymphoma. I asked about the swollen lymph nodes and she said "what swollen lymph nodes?". she was unaware of them (apparently was not told of them or did not take the time to look at my chart ahead of time) and had me lay down to check for herself after the NP had already done that. Turns out I have several swollen nodes throughout my whole body-which I know can be a number of things- so she ordered blood work/x-ray/scans. blood work was done there in the office and then they forgot to give me the prescription for the other tests (I had a lot on my mind and should have reminded them before I left. but they should have been on top of their game). The doctor said she would see me again in 4 weeks.
In the last month, most of my symptoms have kicked in to high gear. I wonder how I will feel in 4 weeks??? even if it isn't lymphoma, why wait so long to treat an infection if I am having a harder and harder time as the days and weeks go on? I should get a second opinion, right?
I did get the second opinion and am so thankful I took the time to do it. The second doctor sat with me for 45 minutes and asked so many questions about my current state of health and my health history. He left no stone unturned! He was everything a doctor should be... he explained things clearly and would pause occasionally to ask if I understand it all. He invited my comments and questions. I was amazed that he cared enough to really consider everything and was graciously honest about his opinions. He ordered his own round of blood work and that was done right away. I will be getting a CT of my chest this week. I meet with him again in less than 2 weeks and I should learn a lot more info at that appointment. He said he is looking at autoimmune and lymphoma, but carefully said he really thinks it's the latter. Even though he did not have great news, I left there feeling really good. The last few weeks and months have taken their toll on my mental/emotional state and my time with this doctor gave me a breath of fresh air! I felt heard, validated, cared about. All of those can really lift someone up, wow!
That is great you went for the 2nd opinion! I had a scare back in April with some enlarged lymph nodes and I got 2 opinions also, mine were opposite yours though- my first Dr was great and the 2nd one was not very helpful at all. Have you had an utrasound at all? Sometimes that and a CT scan can tell if the lymph nodes are malignant (of course you need the biopsy to tell for sure), but I think if the centers look "fatty" that is a good sign.
I ended up just getting dx'd with celiac (autoimmune disease) so I am not sure if my lymph node issues were related to that or not, but my enlarged nodes did go back down to normal size. Mine were very painful though and mine were in my left armpit.
I have another question...
Ever since Friday night, my airway and chest have been getting tighter and tighter. Sunday morning I woke up to feeling like I had a huge brick on my chest and kept coughing over and over to get whatever it was in my lungs to come out. It was awful! It's only been a few days, but it seems as that every hour that goes by it's getting worse. I can only take shallow breaths and I always have a dry weak cough. I wonder if it's related to my other medical stuff going on? Is it normal for someone in my possible condition to have trouble breathing?
I have been doing breathing treatments with the nebulizer at home but breathing is still and issue! I'm trying to find information on the internet about it. I have come across pleural effusion... I'd like to hear from anyone who has or had this, or has knowledge about it. I don't want to assume I have it or diagnose myself with it, but I do find it interesting. Please help!
It seems that every week I have a new symptom. The breathing is still an issue, just like everything else. The breathing treatments have helped a lot. I now have bone pain that runs from my left hand on up to my shoulder. My elbow has ached on and off over the last year but now it is constant and spread through my entire arm. It is not muscle pain, it is bone. I really really want to hear from someone with similar issues. I want to know if anyone has experienced this... I wonder if I am making this up in my head sometimes!!! I know I am not, but all of this is starting to drive me crazy.
Glad to hear that you found a doctor that you feel comfortable with it is very important.
If your blood work comes back okay and your other tests come back okay, please insist on having one of those nodes biopsied, it is the only way to confirm whether you have lymphoma or not. I wish you the best.