Hi arecla,
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.
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!
Oh and I will update when I know more about my options! Thanks!
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?
Thanks a bunch!
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.
Please keep us posted on what you end up doing.
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 :(
Hi Ken,
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.
Any other advice?
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.
If I posted this in the wrong place, feel free to let me know and I can move it somewhere else....really just looking for answers! Thanks in advance :)