Doc called, gallium scan shows problems

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Doc called, gallium scan shows problems

Postby cured4real? » Fri Oct 20, 2006 2:17 pm

Hi --
My rheumie's office called me today and told me that I had some gallium uptake from my sjogrens and whatnot and that rather than go into a lengthy conversation over the phone he would like to see me within seven days, on the 27th, to talk about it. I don't know what the whatnot is. I have an MRI on my neck today. I realized that the area of my thigh where I have a very bright and well defined gallium-loving thingy (it looks like a chicken kidney with a stalk on it as long as it is) does in fact hurt, like a deep bruise, and I used to have a mole there but it was frozen off, but pales in comparison with my neck, so I no longer notice. Last night I could not sleep legs from the knee down on both sides are freezing cold to the touch, so much so that I was afraid of getting frostbite! And they ache. My ankles aren't that swollen though. I had to put a heating pad on but finally just took a hot bath, because I get so cold all over. I never get a fever. I'm a little scared because my eye sockets lit up too, and my neck of course. I've decided that I will not accept a dx or clearing of cancer decision from anyone but a cancer specialist because of this thingy on my leg and the way I feel. Am I right in getting an oncologist involved for dx or will they laugh me out of their office? I just don't trust very well. :cry:
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Postby patoco » Fri Oct 20, 2006 2:45 pm

Hi Cured

First, let me reassure you that uptake on a gallium scan does not necessarily mean you have a malignancy as there are actually q numbers of conditions that may cause the uptalke.

So, guess I'm saying, don't think the worse case scenerio right off the bat :wink:

But.... with your concerns and with the past medical history you have mentioned, I would absolutely encourage you to have the involvment of an oncologist. Try to find one in your area that is a hemotology/oncologist as they would be more familiar with malignancies of the blood and/or lymph system.

Cured, listen, I believe (as a very long time patient myself) you absolutely have every right to expect a full explanation, complete tests and a thorough process by the doctors to determine what in the heck is going on with you. You also have the right to insist on the input and involvment with any doctor that you feel it is important to involve.

It's your life, so don't be hesitant to speak up for yourself!

Best to you

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Feeling cold in legs and arms--from lymphnodes?

Postby cured4real? » Fri Oct 20, 2006 7:30 pm

Thanks Pat, I'm trying not to think the worse but it seems like everyday something more troubling is happening. For two days now, the skin on my calves and arms have been very cold to the touch and I've had to put heating pads on them. I thought it was just from my thyroid and it may be a new dimension to my lupus that is rearing its ugly head (like Reynauds) or I read it can be a spasm of your blood vessels do to infection or other things, maybe the high doses of penicillin, and lastly it could be my neuropathy getting really worse, either due to diabetes or my cervical spinal compression problems and djj. My sugars been dead normal at 100-110 so I don't think its my sugar. This seems like its moving too fast to be cancer or something, more like an infection or bad lupus flare. I'm just paranoid because I want to be sure they don't overlook something important. I've been struggling with lymph node problems (benign) for years and its probably just the same old thing. EVer get cold in the legs like that, and numb? I have pulses everywhere. I just have these moments of feeling really unwell and panicky and dizzy. I better go call the er.
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