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  #211  
Old 03-01-2021, 08:57 PM
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Originally Posted by cmac2012 View Post
Wow. Some similarities all right and numerous differences. Complicated stuff. Have they taken a core sample (I forget the correct phrase) from the enlarged lymph node? I would guess they have. Probably a PET scan also.

I know the feeling about feeling good not long ago. About 6 months before all of this I finished a big job, got paid and noted that I felt remarkably good and energetic. This just after the pandemic broke, about April 2020.

Good luck with it all of course. The body wants to heal, I think. Knowing what to do to help it is the tricky part.
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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1967 W110 Universal Wagon, Euro, Turbo Diesel, Tail Fins, 4 Speed Manual Column Shift, A/C
1980 W116 300SD Turbo Diesel, DB479 Walnut Brown, Sunroof, Highly Optioned, 350,000+ Miles
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  #212  
Old 03-01-2021, 08:59 PM
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Originally Posted by vwnate1 View Post
I'm another who reads your every post .

My father was an Oncologist and the one things above all others I learned from him was fight cancer ! .
Thanks. I just hope I'm well enough to do anything but laze around all day. Even walking is painful and slow.
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1967 W110 Universal Wagon, Euro, Turbo Diesel, Tail Fins, 4 Speed Manual Column Shift, A/C
1980 W116 300SD Turbo Diesel, DB479 Walnut Brown, Sunroof, Highly Optioned, 350,000+ Miles
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  #213  
Old 03-02-2021, 10:26 AM
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I am not a doctor as I informed the lady in a nearby cottage one summer.We have been good neighbours for years. Still are.

As she was always complaining of chest issues. Being a good neighbor I offered to have a look if she wanted me to.

Anyways, all doctors are not equal . By any stretch of the imagination..

For a doctor to deffer doing a simple biopsy over basically billing issues.Do the biopsy and sort out the billing issue later. Simple job.Your doctor needs the pathology. When money trumps service by doctors. It raises serious questions.

Extreme overall joint discomfort Is not symptamatic of typical Hogkins disease anyways I believe. Where a major immune system disorder may be more typical. Then again as I mentioned I am not a doctor. There is an obvious problem with this medicine for money issue.

Actually most blood tests are dirt cheap in universal health care systems. Where the charges for some of them in the American system can be very high. A provider might insist on the biopsy results first before entertaining or authorizing any really expensive ones.

In the Canadian system the doctor calls all the shots. He must follow reasonable protocols but never has a clerk telling him what to do in essence. Each system has problems. Doctors are encouraged to move fast on problems in Canada. It tends to be cost effective. Now if you need some treatment of an elective nature the waits can be punishing in many parts of Canada.

Your wait for an accurate diagnosis has been too long. In far too many cases in America even after the diagnosis is accuratly established. Can require drugs that are very expensive.

Now our own problem was our doctor of forty years gave up the office portion of his practice. For just doing emergency work.. It took us a year to get a doctor that was accceptable to us. Any doctor is better than no doctor in our system. Yet there exists many that are far better than average. I am 79 this year and will have to leave at some point. We as a family fortunatly never had just average doctors. To meet our needs.

Hoping you get better soon. You may be the closest member to a Maguyver we have. Your threads are spectacular.

Excuse any attempts at levity on my part as well. I suspect what you must be feeling like currently. I have had a couple of those times myself. They were not the best of times. In each of my cases the diagnosis was fast. The outcomes uncertain.

Last edited by barry12345; 03-02-2021 at 01:59 PM.
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  #214  
Old 03-03-2021, 03:47 PM
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Quote:
Originally Posted by barry12345 View Post
I am not a doctor as I informed the lady in a nearby cottage one summer.We have been good neighbours for years. Still are.

As she was always complaining of chest issues. Being a good neighbor I offered to have a look if she wanted me to.

Anyways, all doctors are not equal . By any stretch of the imagination..

For a doctor to deffer doing a simple biopsy over basically billing issues.Do the biopsy and sort out the billing issue later. Simple job.Your doctor needs the pathology. When money trumps service by doctors. It raises serious questions.

Extreme overall joint discomfort Is not symptamatic of typical Hogkins disease anyways I believe. Where a major immune system disorder may be more typical. Then again as I mentioned I am not a doctor. There is an obvious problem with this medicine for money issue.

Actually most blood tests are dirt cheap in universal health care systems. Where the charges for some of them in the American system can be very high. A provider might insist on the biopsy results first before entertaining or authorizing any really expensive ones.

In the Canadian system the doctor calls all the shots. He must follow reasonable protocols but never has a clerk telling him what to do in essence. Each system has problems. Doctors are encouraged to move fast on problems in Canada. It tends to be cost effective. Now if you need some treatment of an elective nature the waits can be punishing in many parts of Canada.

Your wait for an accurate diagnosis has been too long. In far too many cases in America even after the diagnosis is accuratly established. Can require drugs that are very expensive.

Now our own problem was our doctor of forty years gave up the office portion of his practice. For just doing emergency work.. It took us a year to get a doctor that was accceptable to us. Any doctor is better than no doctor in our system. Yet there exists many that are far better than average. I am 79 this year and will have to leave at some point. We as a family fortunatly never had just average doctors. To meet our needs.

Hoping you get better soon. You may be the closest member to a Maguyver we have. Your threads are spectacular.

Excuse any attempts at levity on my part as well. I suspect what you must be feeling like currently. I have had a couple of those times myself. They were not the best of times. In each of my cases the diagnosis was fast. The outcomes uncertain.
Even though money is a problem for me, I don't think money is the problem holding things up; it's the medical professionals not knowing what to do, and not communicating effectively with each other.

If lymphocytes are in the bone marrow, it can cause bone and joint pain, as I am experiencing. I ended up having to give up running because my knees and back started hurting so badly I couldn't walk. It turns out that's a warning sign of lymphoma because lymphocytes are in the joints. Lymphocytes in the brain can cause constant headaches, migraines, and other neurological issues, as I am also experiencing.

Thanks for the well wishes and kind words. I really wish I had been born in better health. I always think of what could have been if I hadn't had an extreme sleeping disorder from the time I was born, and didn't have debilitating migraines and mental/social issues that kept me from keeping a job for very long, and almost kept me from graduating high school because I slept through all my classes and had to do a lot of summer school and making up credits at an alternative school and then getting a GED and diploma at a later date. People considered me to be extremely bright and I even got unusually high SAT test scores, yet I flunked most of my classes because all I wanted to do was sleep and I kept getting migraines.
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1967 W110 Universal Wagon, Euro, Turbo Diesel, Tail Fins, 4 Speed Manual Column Shift, A/C
1980 W116 300SD Turbo Diesel, DB479 Walnut Brown, Sunroof, Highly Optioned, 350,000+ Miles
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  #215  
Old 03-08-2021, 05:31 AM
cmac2012's Avatar
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Join Date: Dec 2004
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Quote:
Originally Posted by Squiggle Dog View Post
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.
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.
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Last edited by cmac2012; 03-09-2021 at 05:48 AM.
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  #216  
Old 03-11-2021, 10:46 AM
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Location: Dallas, TX
Posts: 395
Hey Squiggle, have you ever bought and added that green reed check valve on the upper valve body of 722.361?

I seem to be missing mine or lost it in the drip pan. Your pictures helped a lot, confirmed them with my pics. Still I'm not sure about the orientation of one metal piston (B1), it had a center circular shade on it, so I aligned it accordingly towards a part that could've made that shade.
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  #217  
Old 03-11-2021, 09:27 PM
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Location: Surprise, AZ, USA
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Quote:
Originally Posted by cmac2012 View Post
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.
Yeah, I wish I had more options. I just have to take what I can get. I've applied for Medicaid in the past but never qualified, couldn't afford it, or whatever. I applied again recently, but am waiting to see if it will help at all.

I already have a biopsy scheduled, but it's just taking a long time for it to happen. There's a lot of communication that happens, and a lot of back-and-forth phone calls from me to arrange it. It should be done in a few more days. Everything takes time. Any procedures or care providers have to be referred/approved by my doctor.

I can hardly eat anymore, but what I do eat I try to make quality so it counts. I would love for food to taste like food again and not have to force-feed myself.
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1967 W110 Universal Wagon, Euro, Turbo Diesel, Tail Fins, 4 Speed Manual Column Shift, A/C
1980 W116 300SD Turbo Diesel, DB479 Walnut Brown, Sunroof, Highly Optioned, 350,000+ Miles
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  #218  
Old 03-11-2021, 09:38 PM
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Quote:
Originally Posted by filp View Post
Hey Squiggle, have you ever bought and added that green reed check valve on the upper valve body of 722.361?

I seem to be missing mine or lost it in the drip pan. Your pictures helped a lot, confirmed them with my pics. Still I'm not sure about the orientation of one metal piston (B1), it had a center circular shade on it, so I aligned it accordingly towards a part that could've made that shade.

I didn't add anything to the valve body. I have some pictures that I got from Sun Valley Transmissions that I think might be of a 722.361. I just ended up guessing and putting it back together and getting lucky.



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Stop paying for animal enslavement, cruelty, and slaughter. Save your health and the planet. Go vegan! I did 18 years ago. https://challenge22.com/

DON'T MESS WITH MY MERCEDES!


1967 W110 Universal Wagon, Euro, Turbo Diesel, Tail Fins, 4 Speed Manual Column Shift, A/C
1980 W116 300SD Turbo Diesel, DB479 Walnut Brown, Sunroof, Highly Optioned, 350,000+ Miles
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  #219  
Old 03-12-2021, 12:15 AM
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Thanks a lot, just confirmed I put one thing upside down. Does the superior shift kit influence bowden adjustment, i.e. do you need to readjust bowden afterwards? I've got only 2 gears now and wonder if it's all because of that one upside down part or something simple or worse
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  #220  
Old 04-26-2021, 06:38 PM
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Quote:
Originally Posted by Squiggle Dog View Post
my roommate wanted to save money by using a ÜRO brand upper radiator hose.
Hi Squiggle Dog, just saw this, we'll have our engineers do a quality analysis of URO Parts Upper Radiator Hose 126 501 3582 and report back. Thanks for the heads up.

And above all else, wishing you a speedy and successful recovery.
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Last edited by URO Parts Support; 04-26-2021 at 06:56 PM.
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  #221  
Old 04-27-2021, 01:20 AM
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Been awhile and can only hope there has been some upsides for you. In the interm.
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  #222  
Old 04-27-2021, 03:15 AM
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I'm here to tell you that the body is resilient. It wants to heal methinks. I second the good wishes for the Dog. He hasn't posted since March. Hang in their Squiggle!
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  #223  
Old 04-29-2021, 11:55 PM
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Go to Mayo. They will figure it out. They like puzzles and are good at solving them. Do it.

Documentary. Watch it.
https://www.youtube.com/watch?v=vdxhL5UqQxM&ab_channel=FREEDOMISNTFREE
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2012 S350 BlueTEC 4Matic
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2005 E320 CDI
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Previous:
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1986 300SDL 237k, 25k on WVO (Deerslayer)
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1983 380 SEC w/603 diesel, 8k on WVO
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  #224  
Old 05-28-2021, 01:05 PM
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When absent then checking in, a priority is always looking for & getting up to speed on what squiggle has been up to,

hoping for good news.

Last edited by 300D85; 05-28-2021 at 01:35 PM.
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  #225  
Old 06-14-2021, 05:11 AM
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Miguel Llorente "Delibes" posted on FB that Squiggle Dog has passed away. Sad news to hear. https://www.facebook.com/582660959/posts/10159408261105960/

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