cold hands, shaky right hand and tingling pain

I was surprised by the number of times I had CBC with differentials before someone said, "Hey… let's check your Ferritin." I was low. Eventually we discovered H Pylori, killed it, ended-up with iron injections, and then the cold hands and cold intolerance got better. The improvement is waning. We can't find any blood anywhere it isn't supposed to be, so I might end-up with an upper GI scope to see if there's something to see there.

Anyway, I was just really surprised that as often as I was going to doctors they all "assumed" it was the cisplatin treatments doing a number on my marrow. When they actually looked, I was pretty anemic. You might want to mention it.

I'm related to a neurologist. They thought it was nerve damage from the cisplatin, also.

BTW - I am now five days more than 8 years from my diagnosis and five months away from when they called NED.

Some of this may just be that we're getting older. Isn't that marvelous?

Russ and all,

I'm no healthcare professional of any sort. I have a lot of friends who are. I have relatives who are. I helped some few study for their tests during med school.

But that does NOT make me their equal. They have forgotten more than I will ever know. The amount doctors learn is staggering. The amount they retain is impressive. The fact that they are not perfect is not in question. The fact that they, too, are flawed mortals is just the way it is. I've even known a couple of really questionable folks who became surgeons !

But what I am NOT is a passive participant in my health care. If a doctor can't explain, in a couple of sentences, what they are doing and why, then my take is that they don't completely understand it themselves. IF they take my questions as a challenge, that tells me they are afraid to explain or can't. "Thanks for your time, Doctor. Where's the door?"

I had several misdiagnoses as a child… by people who should have known better. Made me skeptical.

Maybe what you pick-up from me is just stubbornness and a whole "Oh really!?!" attitude, Russ. Doctors don't impress me, but I absolutely respect them. There's a difference. I've picked a couple up off the floor after a particularly successful party. They are just people.

Okay - the blood we can't find:

I have had a bunch, like… a bunch… of tests to find occult blood in stool samples. <medicine leaves you with little dignity> They were all negative. My Internist was SURE we were going to find I had a GI bleed we could find. I think he may have gotten over-invested in being right about them.

I didn't have one we can find evidence of via occult blood tests / urine tests / etc.

There is no blood we can find. I'm not leaking anywhere we are going to find.

My latest tests show that I still have low Ferritin and RBC counts. But they are "acceptable" by being either just in, or just fractionally below, normal ranges.

All sorts of stuff happens as a result of anemia. All sorts of stuff happens when you have low B12, too. And low B12 might be because you aren't absorbing stuff correctly because of the H pylori. Which causes anemia and other things.

In fact, it's pretty amazing that the human body ever works right !

There are so many things to go wrong. But since I did have the H pylori, it is possible I had a tissue leak before it got into my gut and, with a history of GERD and a hiatal hernia, that I had a leaky ulcer.

It is STILL possible that I have something wrong with the esophagus or the top of the stomach.

We could do an upper GI scope and look, but … There is no such thing as a riskless procedure. I've also asked my doctor, "So, let's say we look and find a ulcerative place in my esophagus… what would we do about it?" He answered that we'd "watch it."

Wonderful. Useless, but wonderful. No thanks.

I gained weight for no explicable reason. I have very high "Thyroid Stimulating Hormone" as though my thyroid gland is being called on to make more, More, MORE, but my "free Thyroid," is on the low side of "normal." That would "seem" to indicate that I am at risk for hypothyroidism, but so far I am okay.

Oh, I should also tell you that there is a local "for profit" lab and a few times I went and paid cash out-of-pocket for tests I wanted done.

There is nobody more interested in the results of these tests than I am. It would be a mistake to think there were.

Russ, I hit the NED-go-away mark three years ago next month and was happy to "go away." I am soooo happy not to have to go for more treatments and do that whole thing again. I didn't eat solid food for six months (no PEG, I was instructed to swallow my Ensure and Glucerna whether I liked it or not - that wasn't any fun, but it did pay-off).

Anyhow, all… I don't mean to sound flippant or arrogant. I found that I have to advocate for myself and be the squeaky wheel when necessary.

Just today I found-out that the new appointments I was called about were, in fact, last year's appointments and that I don't have any upcoming appointments.

And my NavDx test? Nobody has a clue, but someone will get back to me. Eventually. Maybe.

This does not upset me. I get it. They have hundreds of unreasonable, demanding people calling them every day. Unfortunately, it does mean that I have to be sure that the i's are dotted and t's are crossed.

Be well, all.

Very well, tbret, I think I understand now after reading your wonderfully detailed report/explanation.

It is good to be a little skeptical about things, and question everything.

Nobody wants to go through a bunch of useless tests and procedures.

Take Care, God Bless

Russ