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Swollen Lymph Nodes for nearly a year!?
Hi Everyone, I have hit a brick wall with the Healthcare system (NHS) and was wondering if anyone can please help me.
Dec 2016 - I started with a sore throat
January 2017 - The sore throat was worse and I also felt like I had something stuck in the left hand side of my throat.
February 2017 - I noticed my tonsils and lymph nodes were getting swollen and the pain was getting worse.
I went to the doctors many times over Jan - March 2017 and kept telling them that the pain feels similar to the pain from tonsillitis. (I had 5-6 bouts of tonsillitis over 2015 & 2016). Every doctor I saw said my lymph nodes feel swollen but as I had no pus in my tonsils they couldn't help me due to no signs of bacterial infection.
April 2017 - My symptoms had greatly worsened, the pain was excruciating and I had to use diphlam spray and cocodamol daily. I was extremely tired constantly, had dizzy spells daily, hoarse voice daily, sharp ear pains, my tonsils were massive and my lymph nodes were really swollen and sore. I cried in the doctors office begging to be taken seriously. As a result he referred my to an ENT. The ENT felt my swollen lymph nodes had a look at my throat and said we'll take your tonsils out.
May 2017 - I had a tonsillectomy.
August 2017 - All symptoms as above still present (I left it a few months to see if it would all get better after the tonsillectomy). I also started having sharp lung pains whenever I worked out so I had to stop going to the gym. I went back to my doctor, he confirmed lymph nodes still swollen and he referred me back to ENT.
September 2017 - ENT had a look up my nose and down throat with a flexible camera, said my lymph nodes are swollen and my Pharynx is swollen and inflamed. He sent me for an MRI scan which turned out clear.
October 2017 - I begged the ENT to do more tests as my symptoms were stopping me from going to work and from living my life. I was in pain constantly, and it started to become difficult to talk and swallow due to the pain in my lymph nodes, especially the ones under my ears. I also said that one of the lumps under my right ear had grown more and was rock hard and unmovable which was different to the rest. He referred me for an ultrasound.
Beginning of November 2017 - Whilst waiting for the ultrasound appointment I had a look at the back of my throat myself and pushed/pressed on my swollen Pharynx, this made loads of yellow/green pus appear at the back/top of my throat. I took a photo for proof and went to my GP, they gave me a 10 day penicillin antibiotic course. After finishing the course the pus had stopped appearing but all other symptoms still present.
29th November 2017 - Ultrasound says my lymph nodes are reactive (which I already knew as every doctor I have seen over the past year has told me they are swollen). They've said there's a million reasons why they could be reactive and that they do not look malignant so they're not taking it any further and have discharged me from the hospital.
I really don't know what to do now. My throat is ridiculously sore at either side (right where my lymph nodes are), my neck is extremely tender where the nodes are, my ears have sharp shooting pains and dull constant pain and I feel so tired all the time.
I am worried about Lymphoma as with having swollen lymph nodes for a whole year now. But I have read that if they hurt then it doesn't suggest lymphoma.
I am also worried about having Strep Throat that is not being adequately treated as I have read that if it spreads to your lungs and organs it can shut them down and kill you.
Has anyone experienced anything like this or have any advice please I would greatly appreciate it?
Dec 2016 - I started with a sore throat
January 2017 - The sore throat was worse and I also felt like I had something stuck in the left hand side of my throat.
February 2017 - I noticed my tonsils and lymph nodes were getting swollen and the pain was getting worse.
I went to the doctors many times over Jan - March 2017 and kept telling them that the pain feels similar to the pain from tonsillitis. (I had 5-6 bouts of tonsillitis over 2015 & 2016). Every doctor I saw said my lymph nodes feel swollen but as I had no pus in my tonsils they couldn't help me due to no signs of bacterial infection.
April 2017 - My symptoms had greatly worsened, the pain was excruciating and I had to use diphlam spray and cocodamol daily. I was extremely tired constantly, had dizzy spells daily, hoarse voice daily, sharp ear pains, my tonsils were massive and my lymph nodes were really swollen and sore. I cried in the doctors office begging to be taken seriously. As a result he referred my to an ENT. The ENT felt my swollen lymph nodes had a look at my throat and said we'll take your tonsils out.
May 2017 - I had a tonsillectomy.
August 2017 - All symptoms as above still present (I left it a few months to see if it would all get better after the tonsillectomy). I also started having sharp lung pains whenever I worked out so I had to stop going to the gym. I went back to my doctor, he confirmed lymph nodes still swollen and he referred me back to ENT.
September 2017 - ENT had a look up my nose and down throat with a flexible camera, said my lymph nodes are swollen and my Pharynx is swollen and inflamed. He sent me for an MRI scan which turned out clear.
October 2017 - I begged the ENT to do more tests as my symptoms were stopping me from going to work and from living my life. I was in pain constantly, and it started to become difficult to talk and swallow due to the pain in my lymph nodes, especially the ones under my ears. I also said that one of the lumps under my right ear had grown more and was rock hard and unmovable which was different to the rest. He referred me for an ultrasound.
Beginning of November 2017 - Whilst waiting for the ultrasound appointment I had a look at the back of my throat myself and pushed/pressed on my swollen Pharynx, this made loads of yellow/green pus appear at the back/top of my throat. I took a photo for proof and went to my GP, they gave me a 10 day penicillin antibiotic course. After finishing the course the pus had stopped appearing but all other symptoms still present.
29th November 2017 - Ultrasound says my lymph nodes are reactive (which I already knew as every doctor I have seen over the past year has told me they are swollen). They've said there's a million reasons why they could be reactive and that they do not look malignant so they're not taking it any further and have discharged me from the hospital.
I really don't know what to do now. My throat is ridiculously sore at either side (right where my lymph nodes are), my neck is extremely tender where the nodes are, my ears have sharp shooting pains and dull constant pain and I feel so tired all the time.
I am worried about Lymphoma as with having swollen lymph nodes for a whole year now. But I have read that if they hurt then it doesn't suggest lymphoma.
I am also worried about having Strep Throat that is not being adequately treated as I have read that if it spreads to your lungs and organs it can shut them down and kill you.
Has anyone experienced anything like this or have any advice please I would greatly appreciate it?
COMMUNITY LEADER
Well, there could be dozens of things to say about this. The foremost is that it's necessary to determine what exactly is causing the infection. Apparently, the best way to do that would be to culture a throat swab. But you haven't mentioned that you've had that. Have you? Or have you had the rapid strep test (Rapid antigen detection test)? There is also testing to determine if strep is killing red blood cells (hemolysis) which can cause your dizziness.
If it is Group A Strep, then we'd possibly aim at getting IV antibiotics. You'd also want to eventually find out if you have some immunodeficiency condition which made you so repeatedly susceptible to GAS.
If it is not strep, then you'd probably look into the Epstein Barr virus, which is known to cause much longer lasting throat infections and in some people causes all sorts of chronic problems, even for a lifetime. A virus can cause immune reactions which can cause your dizziness.
EBV is the cause of glandular fever, which is known as mononucleosis in the U.S.
Since strep and EBV can vary a lot in symptoms, it's not a simple diagnosis in your case.
If it is Group A Strep, then we'd possibly aim at getting IV antibiotics. You'd also want to eventually find out if you have some immunodeficiency condition which made you so repeatedly susceptible to GAS.
If it is not strep, then you'd probably look into the Epstein Barr virus, which is known to cause much longer lasting throat infections and in some people causes all sorts of chronic problems, even for a lifetime. A virus can cause immune reactions which can cause your dizziness.
EBV is the cause of glandular fever, which is known as mononucleosis in the U.S.
Since strep and EBV can vary a lot in symptoms, it's not a simple diagnosis in your case.
1 Comments
I wish you were my doctor Ken. I will present these suggestions to my Doctor at my next appointment. Thank you very much.
COMMUNITY LEADER
Hi, there's no reason to worry about lymphoma. But there is every reason to suspect that you are having an exaggerated immune reaction which is causing most of your symptoms. Or maybe you have weak immunity which means you can't defeat an ordinary virus infection.
A probable virus infection made you susceptible to more destructive bacteria, as happens also with pneumonia. So #1 is to be on guard against another bacteria outbreak and get antibiotics, as you know. Check also for fever besides the pus.
Next: do you have a family history of odd immune conditions? A long personal history of infections?
Did you have very bad glandular fever as a teen?
Do you have any GI tract problems?
Did you travel to any place exotic or have possible exposure to parasites e.g?
Your dizzy spells are likely from immune reactions making blood flow to the brain lessened, likely especially so when first standing up. Be very careful you don't pass out and bang your head, which can be very serious.
A probable virus infection made you susceptible to more destructive bacteria, as happens also with pneumonia. So #1 is to be on guard against another bacteria outbreak and get antibiotics, as you know. Check also for fever besides the pus.
Next: do you have a family history of odd immune conditions? A long personal history of infections?
Did you have very bad glandular fever as a teen?
Do you have any GI tract problems?
Did you travel to any place exotic or have possible exposure to parasites e.g?
Your dizzy spells are likely from immune reactions making blood flow to the brain lessened, likely especially so when first standing up. Be very careful you don't pass out and bang your head, which can be very serious.
1 Comments
Hi Ken, thank you very much for your response it is very much appreciated. I have a personal history of Tonsillitis over the past few years whereby I was hospitalized every time due to the severity. This is why I am concerned that my swollen lymph nodes and symptoms could be the a bacterial Streptococcal infection. I have not been anywhere other than the UK have any family history or ever had glandular fever. I don;t have any GI issues either. I just don't know where to go from here. I am extremely unwell and it's really affecting my life and subsequently my mental state.My next course of action is to attend to my GP and beg for something to help me.
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