Posted 9/28/2009 7:21 PM (GMT -6)
I'm sorry to hear about that, my son has had his hands turn blue due to Reynauds they think though. But he also has vascular issues.
I have vascular problems and have had positive readings on PET scans of my lymph nodes under my arms (they are matted together) none in my chest that they thought were bad enough, and some in my groin.
I've had lymph nodes removed and biopsied along with salivary glands in my neck as well. Mayo told me the ones in my neck were likely from sjogrens, the others they felt were just "not cancer" but not normal and then they threw the lupus word around.
My ENT locally feels I may have a very slow growing form of lymphoma or some kind of systemic infection. Once the lymph nodes "burn out" they swell and hurt and its bad. Under my arms hurts bad. They said something about underarm antiperspirant causing cancer and the cancer assoc recommneds that natural stuff, but it doesn't work for me, though it helped with swelling and pain under my armpits some.
The good news I'm told is that lymphoma is generally completely painless and most people get like a single huge lump, like a golf ball somewhere, and you lose lots of weight with agressive disease. Unfortunately, there are conditiongs that can eventually lead to lymphoma, infections like HLTV1 and HLTV2 and TB and probably lots more, especially if it is never treated. In my case, these kinds of infections might be more active because I'm immunosuppressed and then causing more damage. I also have vascular problems and wonder if that is why my lymph nodes are being damaged more easily than other peoples. I don't know.
My lymph nodes showed chronic inflammatory cells, sometimes hyperplasia, and they likely eventually would have become cancerous. Generally I get put on antibiotics for a month or two. Then they may try IV antibiotics. if it is really bad, I get biopsy and surgery.
They can do a needle biopsy with a PET scan or they can do a full biopsy. I have a lymph node in the parotid area that swells and makes me dizzy because it presses on my jugular vein and stuff around my ears. My ENT said its not a big deal unless I feel that way all the time, it happens for a month or two, then goes away. Sometimes these nodes are in tricky places for them to get to them.
Lymph node problems are lousy, they hurt bad, people don't realize this, even the docs, and they wonder why you want them gone. Secondly, the biopsy on the tissue the remove can help them determine if you have an illness and what kind of treatment you might need.
Sometimes my lymph nodes swelling all over like that is my way of getting the flu, and its nothing to mess around with. It sounds like the docs are doing good and the biopsy is the right thing. They did a PET scan on me and I still need a biopsy. I've just not felt like having one. Lots of time they come out with chronic inflammation, sometimes the neck ones are from teeth, and the others from other types of infections over the years, the lymph nodes just quit working eventually. I will say a prayer for you and I know how you feel. A heating pad or ice pack helps me, which ever one works, and soaking in baths, and drinking tea, even ice tea, and trying to stay clean and germfree.
Lymphadenitis can be bad. My son has too many white cells a lot of the time, and his red cells don't carry oxygen all that well. I bug him to take vitamins. I'm sure they will test your platelets and white blood cell and red cell count and all, sometimes just having a bad systemic infection like I get can mess up your blood and make you really dizzy, along with tired. If you have a blood pressure cuff and are allowed to use it, you might check that. My son had blue hands and arms from orthostatic low blood pressure, he was "too athletic" and his epilepsy medicine lowered his blood pressure even more. Then they switched his medicine and he gained a bunch of weight and now he has higher blood pressure, but at least his arms aren't blue and he's not dizzy and feeling like he's gonnna pass out.
Please be careful and be sure to tell your folks if you get scared or feel too bad. My son was getting bad panic when his blood pressure dropped and we needed to get some salt into him and gatorade.
Take care and I hope you let us know what happens. I will say a prayer for you. Try not to worry to much, though I know its impossible. It hurts I know, but the biopsy will tell them what you need to know to get you back on track. I'm so sorry to hear you are feeling so bad now and having to go through this. What the docs always told me was that Lymphoma doesn't hurt.
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids