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GypsumGrl
11-12-2015, 07:23 AM
Let me begin by saying that my family has been affected by cancer and I feel for everyone who has to deal with the experience, the DX'd and the families. Thank you for taking the time to read what I'm about to post.
This process spans a 3 year fight to try to find out what has been happening to me. I'm getting to that point where hope is slim and giving up looks like an awesome, yet debilitating, option.
I had a wonderful job in 2012. One day it was like a switch had been flipped and I just couldn't get over fatigue. I went to doctor after doctor and the fatigue was never resolved. Instead, I had 2 surgeries within a month. One for kidney stones and another was a total hysterectomy and oopherectomy. That is when all things relating to this began. It cost me my job, my home, and everything I had. It took me over a year to recover from those surgeries and 6 months to even get out of bed for more than 30 minutes. It has been a long process ever since.
I have had tons of CT scans, blood tests, Ultra Sounds, Complete Thyroid work ups, immune work ups, etc. And still nothing shows up. I have been Dx'd with 18pt Fibromyalgia, Gluten sensitivity, a nodular thyroid, an infected (and removed after demanding it) gallbladder, and low Vitamin D that never seems to rise even on medication. As of this month, I was Dx'd with a separated collarbone and I've never had an injury to the outside of that right shoulder. Everythinng has been unilateral and on my right side except for the lymph nodes in my neck. I have those since Feb of 2014 and they have not gone down. They aren't large, but they have been painful for the past 6-9 months and are causing more pain in my jaw on the right and makes my teeth hurt. I even have a growth for the past year over the thoracic collarbone joint that has been growing and painful for a year. None of these were painful when they frst started to grow. I have nodes that go up and down all along my right side now and they are also painful and never completely go away. I get rashes, I have phantom fevers and my skin gets flushed, I am freezing during the day and I sweat when I sleep (but not drenching), my liver is hurting now, I'm always fatigued to the point I can't function, and the pain in my neck never goes away. I just saw an ENT who says that all of the tissues in my neck are swollen and irritated. I don't have tonsils, but the tonsilar tissue is swollen too. He has ordered another US. The pain is becoming so bad that I can hardly function most days and none of the doctors believe me, because all of my bloodwork is always normal. It was normal when I had my gallbladder problems too. I don't know where else to turn. I've tried Naturopaths too and the supplements don't work either. I live in Colorado and can't believe I can't find a physician who can figure this out. I know Lymphoma is supposed to be painless, but I've been dealing with this for 2 years and it's getting worse. I've had no cold or virus, so there should be no reason for the inflammation or an infection. No infection shows up on blood tests. Can someone offer ideas for me to bring to the table when I see a physician? Has anyone experienced anything like this with cancer? What does it mean when it's unilateral, except for my neck? What would cause swelling over my clavicle joint over the thoracic bone and not go away (meaning it can't be a muscle for this long)? Could Lymphoma cause a separated clavicle on the distal end without any physical injury? I'm running out of options. Thank you for listening to my ranting.

ladybud
11-12-2015, 08:31 AM
Gypsum girl, you are not ranting, just seeking help and trying to restore your health. Some illness evade diagnosis for a long time, unfortunately. What you describe sounds like it could be several things: an autoimmune disorder that just isn't showing up yet in your bloodwork (should be repeated periodically), a chronic viral infection, such as chronic Epstein Barr virus, chronic fatigue syndrome, which is recently being thought of as a chronic infection and treated with antibiotics and anti-virals in some progressive centers. The bump on the clavicle is likely a swollen joint if it feels bony hard. Lymph nodes there are just above or below the clavicle, not on it. Since you live in CO, National Jewish Hospital may be a good resource for you. They specialize in immune disorders, CFS, etc. as well as the respiratory problems. I would seek help there in their immunology/rheumatology department. A node biopsy could be helpful if there is a node that can be easily removed, but this really sounds more inflammatory or infectious than like lymphoma. I would ask to get tested for cat-scratch fever as well if you have had ANY exposure to cats before this began. There is an antibody test for it. A skin biopsy of the rashes you get may be diagnostic too but MUST include a lupus band test, ordered separately, for it to be helpful. A derm would do that, to check out lupus rashes. Lupus could also cause all your other symptoms, and sometimes, blood tests are negative for it early on. I hope some of this helps you.

GypsumGrl
11-12-2015, 08:56 AM
Thank you for your reply Ladybud, but there are several things I can address. First, as I metioned, I've been tested for everything...EBV, Mono, Lupus, Lyme disease, inflammation and infections, R-Arthritis (I've had a Rheumatologist for over a year already and she tested for everything she could think of, more than once), IBS (I've had endoscopies), all types of bloodwork (CBC, Ferritins, Complete thyroid panel including antibodies, Liver enzyme tests, ESR, CRP, etc., etc.). Everything has always been negative. Even when I had the infection in my gallbladder. After 3 years, something would have shown up to point them in some kind of direction.
Next, the lump isn't just on the bone. It's about 3-4 inches long, extending from the neck out toward the shoulder and covers the whole bone along that side. The pain is located under the bone and under the swelling. I have a new lump that has appeared across the top of the shoulder also, near my neck. And, every time the doctors touch these nodes and lumps, I become severely ill for the rest of the day.
Not infection, not immune, not inflammation...what's left?

ladybud
11-13-2015, 08:59 AM
If the lump in neck or near clavicle is 3-4 inches long, it needs biopsied. The other test that would be helpful first is a pet scan, which shows up any lymph nodes that have abnormally increased activity, including the internal ones in chest and abdomen. What do your Drs. suggest when they see all these enlarged nodes? Usually, nodes that persist over a month and over 1 centimeter in size get biopsied.

GypsumGrl
11-14-2015, 04:15 PM
Well, Ladybud, none of the doctors have ever bothered to address the lymph nodes, because they were painful and not over 1cm. Yet, I have had them for 2 years now. Finally, an ENT has ordered an Ultrasound and then, depending on the results, he wants a CT scan. He is worried because I have no tonsils, I'm 44, my adenoids and all throat tissue is inflamed with no sore throat, and I'm a smoker with Leukoplakia. The Dentists don't think the Leukoplakia is a problem. Yet, the ENT wants it biopsied, because that is where the main source of my pain is from. The right lower jaw and 2 spots of Leukoplakia on the gumline. I won't know anything about my lymph nodes until the Ultrasound I have this next week. I don't have any faith left in it or the docs. They all think I'm crazy or a hypochondriac. I can barely function anymore. All of this since I had a hysterectomy and they put mesh in me. No1 has found any infections. I don't even have a sinus infection. He looked in my nose with a camera. I've been on doxycyclene before and it did nothing to fix this. It's the strongest prescription anti-b you can have. I know I haven't been fighting a virus for 2 years only to have the symptoms get worse. This is just nuts. As for the Jewish hospital, my ability to find a doc is limited. It's governed by state health insurance (medicaid). I just lost my job because I'm always sick or seeing a doc. I can't even work because of this and my family is getting very upset. I'm almost tempted to prove it's an immune response from the mesh, but I can't bear the thought of undergoing that kind of surgery again, when it took a year to recover the first time. Besides, who would do the surgery, with no proof of bodily rejection or damage, while I'm on medicaid? I'm getting close to the feeling of hopelessness and all that comes with it if they don't find anything in the next month or 2. I can't love life this way. I might seriously consider a mental breakdown and hospitalization. I mean, I hear it from every doctor...depression, stress. Do you think you need meds? HELL no, I don't need meds of that type. Who wouldn't be angry after 3 years of searching and being no closer to a resolution?

GypsumGrl
11-20-2015, 07:57 PM
Finally had my ultrasound yesterday. They only did the neck and clavicle, but better than nothing. Hopefully, I hear back on Monday about the results. The US tech did make the comment that I had a lot of them on the right side. Not sure what that statement was meant to imply. And, I noticed when she did the clavicle area on the left, she started to compare it to the right side, even though she was finished with the right. She even took 2 more pics of that side. I hope all is well and her comment and focal points on the right side aren't anything to think about. However, the left side was quick. The nodes on that side are elongated and looked rather large. Although, one she focused on, had no color in the center. Slightly blue specs showed up on doppler, but otherwise nothing. Yet, there were 2 huge blobs next to it that were lit up like Christmas trees. One was super red and orange and the other was multicolored. She focused on that area on the left for a bit. I wish I had been able to see the right, but my head was turned from the screen for that side. Just my luck.
Anyway, wish me luck. I'll post when I get an update.