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Swollen Painful Lymph Nodes All Over Body Not Showing Up on CT Scans

Messages
18
I have posted a bit about this before especially in my abdomen but I have swollen lymph nodes VISIBLE from my cheeks to my thighs. They swell under my chin to the size of golfballs and inhibit my speaking. My cheeks the salvia glands swell to the point I can't smile. My abdomenal glands swell up to an etire 2 dress sizes but swollen hip pads(not sure if there are nodes there or not) Also my swelling throughout th lymphatic pathways and when I get examined all the doctos DISMISS them as "shoddy" , CT scans show virtually nothing especially where they are largest and hurt the most.

How could this be happening ?They can be seen in pictures! I can't hold my arms at my side because they are so so under my armpits. And yet they dont' show and doctors don't think they feel them! I am stunned.

I did have a nuclear test done, and indium scan, which showed ususal and unexpected activity all over in every lypmh group except my abdomen.

Does anyone have any thoughts?

I have had several autoimmune test done, Cunningham panel as well as standard tests. Cunningham was off the charts but the rest were not truly indicative of anything significant'. I had an ANA test with a positive result and a titer of 1:80 which, according to the scale, was high, but again dismissed.

Any thoughts? I am so frustrated. I am in so much pain and feel so much physical pressure that I would pop if poked with a pin and yet nothing.

Thanks in advance this board is the best!
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
And yet they dont' show and doctors don't think they feel them!

Hi Bertie7- I also get very swollen lymph nodes under my jaw, when I'm in a flare.

Why the doctors can't feel yours I don't know. Mine are clearly swollen and a little tender to the touch as well, but only when I'm in a flare.

My feeling about my swollen glands is that they are caused by immune system activation because it only happens when I'm in a flare.

Jim
 

ebethc

Senior Member
Messages
1,901
Hi Bertie7- I also get very swollen lymph nodes under my jaw, when I'm in a flare.


ditto for me, also chronic sore throat...

FWIW, It all escalated last summer, to the point where I thought I had mono all over again, then it all dissipated in August and I felt better than i did before.. Right before I got worse, then much better, I followed the SIBO protocol from John Hopkins using anti-microbial herbals from Biotics (the study also used metagenics, but biotics is a little cheaper)...This protocol triggered the whole thing... I don't know what you should do, but this is what finally got rid of sore throat, and swollen glands... It was a big step - but only one step in a series... I had a lot of rest before this, and did other things under an M.D. care, so it's not a magic answer... I went as far as I could w doctors first, then started fixing the things they couldn't thru my own trial and error... I had had thorough medical testing before I did all this.. good luck...

https://www.ncbi.nlm.nih.gov/pubmed/24891990
https://universityhealthnews.com/da...ine-with-a-sibo-diet-for-even-better-results/