This is my first time posting here as I have become desperate for some help/advice. My name is Andrea, I am a 26 year old female. Starting in Oct of last year (2010), I randomly noticed two large lumps on the back of my head/neck. Both sides were swollen quite a bit and kind of banded all the way across the base of my skull. This was the first time that I had noticed it and even though it caused discomfort I figured I would sleep on it and it would go away. Well It didn't...
Here it is almost a year later and I am still dealing with these swollen lymph nodes. I have been to two different doctors and have tried three different types of antibiotics, had multiple blood tests and was prescribed maxalt for migraines. The antibiotics obviously didn't work, and the maxalt helps with some of the symptoms...sometimes, but doesn't treat the problem. My blood tests have all come back normal with the exception of one in which it showed I had a very slight positive reading for the presence of anti nuclear antibodies. This blood test prompted my doctor to test me for lupus and the results were negative. Neither of the two doctors were able to diagnose me and I have struggled with seeking more help. One of the biggest issues is that I do not have health insurance so I can't see a specialist which is very frustrating.
Here is a little of my health background:
I have hypothyroidism and have been being treated for that for the last 3-4years with levothyroxine. I also was diagnosed with PCOS (poly cystic ovarian syndrome) and am currently taking metformin for that. My grandmother passed away in her late 50's early 60's of lymphoma but I don't know much more than that.
A list of my sypmtoms:
Lymph nodes will swell and shrink periodically and don't always bother me.
I feel sluggish and fatigued ALL the time when they are swollen
I feel pressure in my head and almost like my ears are plugged while glands are swollen
I get random bouts of nausea but have never actually vomited
I have chronic neck and back pain
I have had low grade fevers off and on
I feel like I have become weaker, its hard to lift things that usually are not an issue for me
I get dizzy/confused feeling sometimes
I get pounding in my head when I stand up or stretch
I have had gastrointestinal issues over the last year or two
within the last week I have noticed red bump along my hairline behind my right ear and my scalp seems to be itchy of and on.
My questions are does this sound like it could possibly be lymphoma? Because I don't have health insurance, what are my options? I truly feel like there is something going on with me but I don't know what to do, I cant afford to see a specialist out of pocket or get expensive scans. I have a three year old daughter and it scares me that this has been going on for almost a year and the doctors have not been able to diagnose me. I don't want to think that I could have cancer (Im sure nobody does) but I can't help but wonder if I could. What would you do? Any and all advice is welcome.
Hi, it could possibly be lymphoma. But more likely it involves your autoimmunity.
The big question I'd have for starters is if you were evaluated for Hashimoto's Encephalopathy? Most of your symptoms might be consistent with that (especially the migraines) -- EXCEPT for the ears and swollen nodes.
If it is HE then the treatment is with ordinary (cheap) steroids... and in fact HE might be diagnosed by trying a steroid (such as prednisone) and seeing if you improve. A downside is that corticosteroids increase glucose intolerance, which would worsen the PCOS glucose effects.
As far as the ears, most ear infections are viral - not bacterial so antibiotics wouldn't help. But autoimmuntiy can also cause the ear canals to swell, so maybe that's what is happening in your case. Maybe you are super-reactive.
Thanks for your reply. I have not been evaluated for Hashimoto's Encephalopathy and had actually never heard of it before this post. I did some quick research on it and the symptoms don't seem to align with whats going on with me.
I would like to clarify about the ear thing. This only happens when the back of my neck swells really big and causes some sort of pressure in my head, it also feels like the pressure with in my head is plugging my ears. When the swelling goes down, that does too.
The first doctor prescribed me migraine medicine not necessarily because he thought I had migraines but because he thought it would help with the symptoms of what ever is going on. If I remember correctly, the maxalt works to help reduce the swelling of blood vessels in the brain, which could be revealing some of the pressure that I am feeling.
I am not totally convinced that whatever is going on is not an autoimmune, however the doctor said that I tested only slightly positive for the ANA and the next blood test revealed nothing. She did prescribe me meloxicam (used to treat arthritis) for the neck and back pain.
Thanks again for taking the time to reply. Its hard not knowing what is wrong with me and not having the money to see the right people to find out.
Anyone else have any ideas what this might be? Anyone diagnosed with lymphoma recognize any of these symptoms? If it is cancer would the nodes swell then shrink then swell again? I'm looking into getting some help to rule out lymphoma. Its scary not knowing :(
I was diagnosed last year with lymphoma and the only symptoms I had at the time was a lump on my breast (which is an unusual place for lymphoma to be found). Many people don't present with any symptoms, however, some people have what are called "B symptoms". These B symptoms include: Night sweats, fever and weight loss. The night sweats are usually drenching...to the point where you need to get up and change the sheets. The weight loss is usually more than 10% with in a 6 month period. Some people also experience itching and of course, swollen lymph nodes. Since lymph nodes are present throughout your entire body, they could present anywhere, however the most common places are your neck, near your clavical, and under your arms. Typically these lumps are painless.
Have the two doctors suggested being tested for lymphoma? Usually a biopy of a lymph node is done to determine if lymphoma is present. A PET or CT scan might also be another option. Talk to your doctor about the possibility of cancer and seeing a specialist. As far as having no insurance, you might go talk to DSHS and see about getting on assistance. They may be able to get you signed up right away. You could also talk to someone in the hospital billing department to see if they have any kind of financial assistance or grants that you could sign up for.
I have two young kids of my own so I know how scary the thought of cancer can be. I know it's hard but try not self diagnose yourself just yet. And be careful looking too much up on the internet because that alone will the scare the hell out of you.
Thank you so much for your reply! I crossing my fingers and toes that it is not cancer, and if I had to make an educated guess, I would say that it probably has something to do with an auto-immune disorder. It is tough though not knowing and also the doctors not knowing. I am looking into getting some kind of assistance so i can look into it further. Until I can rule that out, it is a little scary. I know that reading on the internet can make things worse, but its hard not too.
As far as the "B symptoms", I don't have drenching sweats or weight loss...in fact I have been gaining weight. This makes me feel better. Like I said in my original post, my grandma died from lymphoma so its tough not to think about and I also don't want to assume that its not and not take the initiative to look into it further. Neither of the two doctors have suggested I be checked for cancer but they both ran test and then (what I felt) "gave up" on me.
Thank you again for replying, I appreciate you taking the time to do that. I have been checking back on these threads like a mad woman LOL! So just curious, since your lymphoma was found in your breast do they still qualify or is that the same as breast cancer? what was the treatment for it? Where are you at now?
For anyone that cares...I saw another doctor at a local "low income" clinic and this Doctor said that she thinks that it is the muscles in the back of my neck and prescribed me a muscle relaxer. I am not currently experiencing the extreme symptoms however the back of my neck is still swollen. My blood work came back good so who knows. I feel better about it not being cancer though just wish someone could give me a definite answer. Thanks for listening!
I'm so sorry it took me so long to get back to you. I thought I had added this conversation to my watch list but apparently I didn't.
I'm so glad you were able to see another doctor and that your blood work came back clean. No "B" symptoms are good, but lack of them doesn't necessarily mean you don't have cancer. I didn't have any B symptoms either. From what I understand many people don't. So how are the muscle relaxers working for you? Have you noticed it getting any better?
You asked me about whether I actually have breast cancer or lymphoma. I have lymphoma that was presenting in the breast, if that makes sense. Different kinds of cancers look different under the microscope. They found lymphoma cells in my breast, and later a tumor that sits near my throat and possibly one on my liver (although this is debatable between doctors). I went through chemotherapy for about 6 months last year and now I'm on what they call a maintenance program where they intraveniously give me a very expensive drug called Rituxin every 2 months for 2 years. I also have frequent blood work and CT scans to make sure the lymphoma is behaving itself.
The type of lymphoma I have is called Follicular lymphoma, which is a slow growing cancer. Initially it responds well to treatment but it's not curable and unfortunately I will have to battle this beast each time it decides to come back. Needless to say, I'm hoping and praying for a very long remission.
Well keep us posted on your progress. I hope you start seeing good results soon.
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