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Originally Posted by Squiggle Dog
The only thing that's been done so far is multiple blood tests, which have come back clean other than markers for tissue damage and increased metabolism. The doctor acts like he doesn't really know what to do.
He had me scheduled to get a biopsy done on the lymph node, and the person in referrals said that the referral had been sent over. I called the surgeon's office a few hours later and they hadn't gotten the referral, but told me they'd call me back the next day. They didn't. So, I ended up playing phone tag back and forth between my doctor's office and the surgeon's office. The person in referrals would say the referral had been sent, but the surgeon's office would say they hadn't received it.
Then finally, the surgeon's office got the referral, but they said they don't know what to do with just a list of symptoms and no instructions. They said I needed to call my doctor. So I did, but the person in referrals always seemed to be off for the day. Finally, the person in referrals had me contact another surgeon.
The previous surgeon was only 5 minutes away. This next one is 30 minutes away. I went through the same phone tag for days with this surgeon, too. Just today, I saw the surgeon, who seemed confused about what he was supposed to do. He examined my lymph nodes, and laughed at the one on my neck and said it was just an impacted hair follicle, or pimple on the surface. It's not.
He examined the one in my groin and wants to do a biopsy on it. I told him about my other symptoms, and he seemed skeptical like I was making it all up, or they weren't that serious. He was pressing me to go back to work. My bones and joints are so sore that I can barely lay without being in agony, let alone walk. I'm constantly nauseated and am starving because I can't force myself to eat any food.
Anyway, they gave me surgery paperwork to sign, and they had me scheduled to have a hernia repair. But, I don't have a hernia. So they had to redo the paperwork and said they couldn't give me an estimate because they don't have a code for a lymph node biopsy.
Hopefully a biopsy will get a diagnosis. I have to get more blood tests and a COVID test done in the next few days. Ugh. I'm not going to have money or my health.
I'm frustrated because I feel like the doctors don't realize how serious this is, or what to do about it. I'm also living in a place where the medical system is overloaded because almost everyone is over 80.
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Wow, makes me appreciate my doctors. What do I know but I think you deserve 3rd and 4th diagnoses. Time could be of the essence here. Excising a lymph node is not a big deal. Are you on Medicare yet? Personal question, no need to answer - I am and it makes life easier. But I think you could appeal somehow to get a biopsy and a PET scan. Call different hospitals and ask if they can do one. State health care could help with a few procedures. It will cost the community less in the long run if you are diagnosed in a timely manner.
Here is an idea. One clue in my semi self diagnosis was looking at my blood tests over time. I had one done in early July '20 for my first surgery at Stanford: hernia and removal of low grade cancer from a kidney under the same anesthetic procedure. Then I had the prostate reduction on Oct. 10, blood test a few days before. My July numbers were better than the October numbers, the red and white blood cells and platelet counts. And my energy was a lot better in July. The count difference wasn't huge, my July numbers were not nose bleed but it was apparently enough.
Marrow stunting, at least in output, not sure how temporary or permanent it can be, leads to lower blood counts. At first I was looking at scarred marrow - marrow fibrosis. Scary. NHL may be more curable than actually scarred marrow, not sure.
Long story short, like a woman in VT (formerly here, she still owns a house in Berkeley that I maintain for her tenants) of my long acquaintance tells me, you've got to be your own advocate on getting care. You know your case better then any of them. They are busy, a lot of faces to process. She cured up from breast cancer from chemotherapy, she's convinced that's what did it anyway. It's maybe 3 years later, she seems good as new, all her hair grew back. Most of mine has fallen out.
Get you blood test results over time and study them.
Also, stop all sugar and ice cream, the latter about the worst in sugar/sat. fat combo. The book "Sugar Blues" is really inspirational.
Try that Trader Joes green juice. Maybe even a day or two a week with nothing but that or a lot of that and light meals. If you start bringing up phlegm, could be a good sign.
Modern diet is weird too often. We have access to all manner of food year round, some of it digests poorly with other items but we frequently don't have a clue about it. You never know, could be one by-product of incorrect digestion is causing you grief in some of your other health issues. "Food Combining Made Easy" by Herbert Shelton is a seminal work in that field. It's not a large book, doesn't take too long to read.
I'm looking to go more and more paleo in my diet. Eating stuff that humans ate 10 and 20 thousand years ago and before. Our digestive systems don't evolve that fast. Wheat has only been eaten for 9000 years and that far from universal, much less in many regions. Our guts did not evolve while eating that stuff. Gluten is way gluey.