Thanks for all your encouragement, guys.

In terms of antibodies to the adrenal--You know, I had these years and years ago, but not lately. My sinus guy, who says he sees lots of this from steroid use, is confident that it will just gradually improve. I'll give it a bit of timee before gettign mroe exotic tests. (I think I have adult-onset dyslexia!).

The antibodies that were done have to do with coagulation. My neuro ordered soemthing called lupus anticoagulants. The screening test came back positive, but the specific test is negative. I don't quite undestand this one, EVEN after reading on the lab's site, but, it seems if it's negative, then they look for anticardiolipin antibody an antiphospholipid antibody. I think these are all related to "real" illnesses that show themselves younger than I am though, so they'll probably be okay.

My friend said my body could be considered like a passport, getting a new stamp with each new specialty I visit. He says just think of the hematologist as another stamp!

The oddest part of this is that as soon as I saw my cortisol levels, I felt I could relax, go to bed early, and lie around the house as lazy as I want to be.
It validated being tired, and made it feel okay to rest.

My son just got a cold today, and I am terrified. I very narcissitically am totally concerned with the impact of HIS cold on ME. I do not want to get it. If I do, it will be another sinus infection, and those have been so hard to treat in me without a short course of steroids and antibiotics. I just don't want to catch it. Ya think he'll wash his hands? Ya think? Not.

"My son just got a cold today, and I am terrified. I very narcissitically am totally concerned with the impact of HIS cold on ME. I do not want to get it. If I do, it will be another sinus infection, and those have been so hard to treat in me without a short course of steroids and antibiotics. I just don't want to catch it. Ya think he'll wash his hands? Ya think? Not."

Now you know how I feel after years of steroids.... Neighbor calls. Child at school is sick as a dog and running a fever.... Mother cannot get away from the office... Will I pick him up??? Not in a thousand years... I get black grades in my "helpful neighbor" gradebook.... :) :) :)

Cathie

I made the kid run out and buy Purell and Chlorox wipes and sanitize everything he touched!

Liza Jane,
He'll probably never truly understand, but he'll be OK.
He'll just grow up thinking "Mom's weird!".
My 3 older kids did that.
Now they're parents themselves and finally
understand - 'What goes 'round - comes 'round'.
I bet'cha they find themselves thinking
"I'm becoming one of my parents!"

update
 

I managed to get only a mild cold, rather than sinus infection, amazing.

I've had blood tests over the past week, and they show that I have isolated pituitary suppression of ACTH, which means it's just a slow recovery from a few days of steroids in June that's knocked out my pituitary.

Also, the numbers are definitely improving. They're still suppressed, but better, and I do feel more energy returning.

HOWEVER---

I am getting disturbed by small sensations which keep pricking at me. The tips of my fingers, especially in my left hand, have developed a prickling feeling, and when I touch something lightly, just a piece of paper, for instance, the touch can be extraordinarily unpleasant.

Also, I feel like I'm always itchy. But it's not really an itch. I have longish hair, and the tips of the hairs prick my skin as they lie on it My face gets pricked, as I talk, my feet feel pricked. Each little prick leads to wanting to touch it, as if there's a mosquito to slap, or an itch to scratch, though the sensation is gnerally gone by the time I reach it. Not always.

It's really bodywide, including face. Given that my symptoms were always pretty predictable: vibrations, numbness, pain or cold in my feet, would any of you mavens out there think this is an "exacerbation"?

I think I'm wearing my neuro out. He sees me as soo much better than when I fist saw him this winter, with lots of back pain, that he'd be happy for me to just be happy the pain is better. He's a generalist. I'm wondering if it's worth going back to Latov or someone on his team, or whether pursuing more "answers" or "treatments" at this point is besides the point.

Mostly, that's what I'v been thinking. I've been worked up for just about everything in existence. And I really don't want meds.

Oh, one thing: My cholesterol has always been 200 - 250, and of NO concern to any of my doctors, because my HDL is 90 or more. That means that all the excess over 175 can be accounted for by good cholesterol. But last week when my endo checked it in his office, it was 340. He was pretty stunned, and had it repeated. It was 350 on repeat. We spoke today, and he said, given that I have so many other issus just now, he'd not pursue it, just follow it.

Could the high cholesterol bee related to the other things like the pituitary, or just the stress on my system?

I take: alpha lipoic acid, acetyl l carnitine, N- acetyl- cysteine, fish oil, dhea, 5HTP, B12, and an antioxidant combo.

Good news
 

I have a pleasant update! Last I was here, my new neuro had sent me to a new rheumie because he was worried that spots on my brain mri were from a rheumatological illness. While waiting to see him, I went to see my old rheumie, who drew bloods and got results that looked like anti-phospholipid syndrome.
The new guy re-did the blood tests, and requested copies of my brain mri to view himself.

Today he has completed both tasks.

First, he said the brain MRI is not at all like what you see with rheumatological illness or vaculitis. What he sees is much much worse than that, and the spots look different. If you were to rate spots on MRIs he sees in his rheum patients on a scale of 1 - 10, my spots would be a 1. Also, he said, the distribution and appearance of the spots is exactly what you see with migraines, which I have. (The report had read that the spots could be either rheumatologic--vasculitis--OR migraine.)

Second, there's that old rule that you never assume anything from on abnormal blood test, and, in fact, you don't order others based on it until youv'e repeated it and it's abnormal the second time. My blood tests for anti-phospholipid antibodies were all negative this time!

YAAAY!

On the other hand (and now I'm sort of blogging to keep records everywhere), I have a sinus infection. I'd been trying to keep it under control for almost two weeks with just irrigating, but it's not working. I had a batmitzvah to go to today in Vermont, by plane, the last of this generation of kids in my family. Vermont when the leaves are turning! What could have been nicer? But I'm too sick to get on the airplane, and have just been in bed all day. I called my endocrinologist to tell him, and ask him a question: Since we know my pituitary is not working, and that you need its stress hormones to get well, should I be on steroids even though the thing we would want to do most is to keep me off? He said Yes. When you have pituitary suppression, it's hard to get well from simple things, and when you take a steroid then, it's not as a "drug", it's as replacement, like taking thyroid hormone when your thyroid isn to working. It won't making my recovery from the hypopituitarism more difficult.

So he's phoned my pharmacy a prescription for hydrocortisone, which is apparently what is used for this.

My son, who had a bad cold a couple of weeks ago, is kind enough to go out to pick up the prescriptions. I think it's the least he can do, seeing as even with using Purell, he was unable to refrain from contaminating me. I'm going to hold the kid responsible for my illness and milk it for all I can! He does make a mean chicken soup......just thinking.....maybe he can rent me a DVD to watch, too...:winky: He's a good kid, and good to have living at home while he goes to college.

Wow! Scared me there..
 

You are a humding of a mystery writer. You had me all the way to the end with the negative bloodwork. This is such a relief.

But what's with the brain spots? Is this a serious problem?

I'm sorry you missed your trip to the barmitzvah. I know you really wanted to go. Don't miss a step with your son. Chicken soup, a movie to watch, chocolate, chocolate and more chocolate, warm milk for bed and chocolate, chocolate and more chocolate.

Update us on the brain spots when you feel better.
Billye

LJ
 

It's good news about the negative blood test. I too have that pricking sensation all the time.That's a flare for me. Sometimes it feels as if tiny bees are stinging me everywhere all at once. Also I have described myself as a human pin cushion for sewing needles. Hundreds of tiny needles sticking me. It stings a bit and you want to scratch and rub at the same time.

As far as the neuro is concerned, I think you ansered your own question. Maybe you'd like to wait a bit and see how you go? The chicken soup & the DVD sound very nice. You can probably use a nice good old fashioned rest, and a film to occupy your mind for a while so you can stop thinking... and zone out!

Yaaaay. Great news!!! Good to hear about the spots and the second test. I know those are both a big relief to you.

Sorry about the sinuses... So much fun... Somehow I overlooked this post and didn't know about this. Seems like sinus trouble is running rampant at this point...

Would give anything to see Vermont right now, but don't think my ears would appreciate an airplane ride... Besides, the last time we were up there during fall foilage, there were no available hotel rooms...

Cathie

The spots on mri---for those wondering---apparently, when you get migraines, you get spots on a certain film done with an MRI. I'm not sure what it means, but it says "T2". What the rheumie explains is that migraines are the result of spasms in vessels in the brain, and that it's the spasm that causes the pain and the finding. It's not something is coincidental with migraine; it's an inevitable finding on mri. So the only thing about it to worry about, is that you're prone to migraines. Apparently, there's no further significance. Migraines are a real thing.

Sinus update: I saw my NON-surgical sinus guy today, and he's thinking that I'm not necessarily "infected", but that the last surgery has scarred closed, and will need to be reopened. He felt kind of stuck between a rock and a hard place, because the thing that will help, steroids, is bad for my pituitary. He actually spoke with the endo while I was in the office, and they agreed on a strategy--half-dose cortisone for a week.

While I'm not pleased that the sinus saga has no end, it's still way better than worrying about the brain mri and antibody tests.