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Where to start? My story so far...Its a waiting game!

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Old 11-13-2011, 09:17 PM   #1
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AngelOfLight82 HB User
Where to start? My story so far...Its a waiting game!

Hello all!

I've been contemplation on whether I should make a post or not. Well, obviously I decided too. Lol! I don't know where to even begin. I guess I can share my story so far. I haven't been dx with lymphoma. Its a very real possibility and I guess I'm just waiting it out & looking at other reasons for my enlarged, swollen lymph nodes to try to calm my nerves. Trying to be optimistic and yet realistic, which is a hard thing to do. I know many of you were in my shoes once upon a time so I'm sure you understand my mixed emotions.

My story so far-

To catch you up, for almost two yrs I've seen my share of doctors. You name it, rheumatologists, neurologists, GP, GYNO, etc. I've been on a mission for these last two yrs to figure out whats causing my high positive ANA (antinuclear antibodies), yet no answers. I've been test 3 times over the last 2 yrs, and all 3 times have come back as high positive results, so I hardly doubt its from false positives. I have symptoms of joint pain & stiffness, muscle cramps & spasms, nerve pain & damage, etc that seem to fit dozens of disease & autoimmune diseases, but I've been tested for many of them and you guessed it, ALL NEGATIVE! I'm more than likely positive for a genetic connective tissue disease that runs in my family called Ehlers Danlos Syndrome (still need to be genetically tested to confirm), which would explain many of these symptoms. But let me not get off track here, back to the reason I'm even posting on this board. Lol!

I noticed about 4 months ago a hard, non fixed lymph node behind the back of my right jaw that was a bit tender. Then 3 months ago I noticed 2 very hard, non fixed (about 2cm) lymph nodes in my right groin area. Then more recently (2 months ago) I noticed about all the swollen/enlarged lymph nodes in my upper chest and armpit areas (both left & right-probably close to a dozen or possibly more, some about 3cm), which kind of freaked me out. I noticed it one night laying in bed as I went to scratch my chest & it was very lumpy. Very strange & obviously not normal. I kept putting off going to the doctor. Thinking there has got to be an easy explanation for all of this. It has to be autoimmune related because I know some autoimmune diseases can cause the entire body's lymph nodes to swell. But what? So far everything is negative.

So finally, about a month ago I saw my GYNO to address the swollen/enlarged lymph nodes in my chest/armpit area as well as my groin area. He seemed concerned and mentioned lymphoma. He told me when I saw my rheumy next (which was only 3 days later) to request blood work. Of course all my blood work has come back normal. I have no other symptoms other than occasional itching (so bad sometimes I make myself bruise) and occasional loss of appetite and fatigue. No weight loss or night sweats. Now I know lymphoma can't be dx on blood work alone & can only be confirmed through a biopsy. Well, I'm finding it a bit difficult finding a dr who will refer me to a surgeon/oncologist for a biopsy. I guess we are just waiting it out. I thought of EVERYTHING that could possibly be causing all these enlarge/swollen lymph nodes. Autoimmune??? So far, negative for all. I'm on Plaquenil to treat my "mysterious autoimmune disease". Its an anti-malaria drug & I've read some malaria drugs can cause nodes to swell. Been off it for almost a month, & no improvements. No signs of infections of any kind, so thats not the cause. I really have no clue & am baffled. But I just know there is a reason.

I'm a rational person who thinks there is got to be an explanation. I also believe I'm not immune. Not even to cancer. No one ever wants to have cancer and everyone (well, most) think that it can't happen to them. Well, I happen to think that ANYTHING IS POSSIBLE (even cancer) and that this is still a very real possibility for me. My positive ANA??? It can also mean cancer, not necessary an autoimmune disease. Just looking at the bigger picture here & being realistic. I guess my only option is to wait it out another 2 wks to 2 more months. If I have it, I more than likely have a slow growing form and waiting it out won't hurt, I'm just guessing anyway. I really have no clue.

I wanted to share my story in hopes that some of you may take the time to read and respond. I would love to hear from you. Sorry my post is so L-O-N-G. I promise my next one won't be as long. Lol!


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Old 11-14-2011, 06:16 PM   #2
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AngelOfLight82 HB User
Re: Where to start? My story so far...Its a waiting game!

One more thing I should add. I've been having issues with my salivary glands under my tongue. Anyone know if there is a link to lymphoma? I've been tested for sjogren's syndrome, but its a negative for that as well. Not sure if its stones causing all the pain and swelling. Going to make an appt with an ENT this week. Yes!!! Another doctor! Can you tell I'm excited. Lol!

Let me know if anyone knows if there is a link between lymphoma and salivary glands. I'm curious. I've tried to Google it, but didn't get very much from it.


Old 11-15-2011, 10:15 AM   #3
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mnemosyne HB User
Re: Where to start? My story so far...Its a waiting game!


I have a relative with lymphoma. If your blood tests are normal and you are not dealing with symptoms such as drenching, change the sheets in the middle of the night, night sweats or overwhelming fatigue, then you do not need to worry about lymphoma. In fact, the worry is probably worse for you.

Please note - for the most part, even if you had lymphoma, absent symptoms like those above or other signs, like changes in the ordinary composition of your blood or an enlarged spleen or evident tumors - early treatment would probably not be recommended. Most are slow-growing and early treatment is not necessarily of benefit. So pay attention to your symptoms, keep in regular contact with your primary care doc, and you should be fine.

Old 11-15-2011, 03:47 PM   #4
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AngelOfLight82 HB User
Re: Where to start? My story so far...Its a waiting game!

Thank you for responding.

I do know that not everyone with lymphoma has "B symptoms". Usually these symptoms, like the ones you mentioned, like the night sweats, the weight loss, etc, are seen with more aggressive and advanced stages of lymphoma. Blood work can not be used to dx lymphoma. ONLY a biopsy can be used to dx lymphoma. A CBC or other blood work will only be positive if you have a more advanced stage of this cancer that has already reached the blood. I mentioned this to my GP and he was kind of choking on his words and agreed with me. He did say if I haven't seen any changes (decrease in swelling, etc) to come back in 3 months. Still have another 2 months to go. But I am defiantly going to pursue a biopsy. I have GREAT health insurance that will cover it and you can never be too sure. I'm only 29, married and have an 8 yr old daughter and 12 yr old son. I have to do it for them. After all, I'm their caretaker too. Like I said before, my positive ANA could also be positive for cancer. Maybe thats why all the autoimmune disease tests keep coming up negative. Yes...stress can make you sick, it can also kill you. Probably faster than cancer, but if I'm looking at the possibility of having cancer, than I need to be sure.

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