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Latest VA doctor visit - perhaps troubling news ahead

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Posted 2/6/2015 6:56 PM (GMT -8)
Thanks, to all that posted since my last post here. Wore myself out today running errands, and sitting in on a non-paid consulting session, still do that about once a week.. As the day wore on, pain and pressure building up behind the eye in question. Definitely something going on, but will have to be patient for the answer(s).

Logo, some interesting thoughts there. No, not getting rid of "purgatory", been using it too many years, and while it seems appropriate here, it still has to do with my catholic faith, not my personal journey. I use the same name on some sports and automotive forums too. well known by that name. and someone should tell compiler, that I don't know why he keeps posting on my threads, he knows that he's been on my ignore forever. I only know that he posted, because you said something above, so I have no way of knowing what's being said by anyone on my ignore list - thought that was the point of it.

the smell hallucinations are very weird indeed. smells like batter acid, very toxic smelling, very strong, almost makes feel like I am suffocating from them, but short lasted, perhaps 5-15 second bursts typically. they start in the air above my head towards the right, and then fill my entire nose and breathing with it, then just like that, they are gone. they can be worse if I stand up and start to walk too fast, or if I tilt my head back suddenly. it doesn't happen every time I move, I would say 7 out of 10 times I can make it happen on demand. if I wasn't certain they were false, it might actually scare me, but I know they are not real.
Posted 2/6/2015 7:27 PM (GMT -8)
Purg,
When my brother was dealing with the olfactory hallucinations a couple of years ago, he Skyped me and told me he was being warned he was going to hell, or that he was being visited by demons. He said he would wake up at night to smells of brimstone, and that's what worried him.

Whatever caused him to experience this, they stopped as quickly as they started, and I sincerely hope yours go away as well. I know they must be disconcerting and even alarming, but please remember that there may be a cause other than the serious issues you've cited. Let's hope so.
Posted 2/6/2015 8:11 PM (GMT -8)
Clock, I took what you said literally, but perhaps I shouldn't or perhaps took it too seriously. Who told him he was going to hell? Or is that what he thought?

I am only going by what the doctor told me. The combination of this growth behind my eye on the actual eye socket, the olfactory hallucinations, combined with increasing dizziness are not good omens, and this doctor, for now, is tying all of these symptoms together.

I was folding laundry just a few minutes ago. Standing by the side of the bed, and every time I bent over to fold something, poof, a new atmosphere of the "odor" hit me. It was as regular as clockwork.

I got braver today checking my eye, not real big about poking my finger around or near my eyes, but this lump is much longer and deeper than I had first thought, it extends much further away from my eye (inward direction) then I knew about even 2 days ago, and there is a part of it that can be moved sideways with my finger. The part I originally knew about, and what the doctor felt, was a solid mass on the eye socket itself. Those special MRI's can't come soon enough for me.
Posted 2/6/2015 10:09 PM (GMT -8)
David:

((((((hugs))))), hey man what on earth are you doing? I first want to say that I'm sorry I've not been around to support you, like I should have been. I've been in a very dark place as of late, and struggling phyiscally myself with some "new" issues. I didn't want to bring you down at all, we made a pack that if you don't give up, I won't give up. Well..........I've been really close to quitting.

None of the news is good that the VA doctor has had to say. It's so hard to understand why some folks have so much on their plate and others slide thru life w/o a care and have more wealth, health, and happiness. I would agree the RO really did all the damage to you. You'll be in my prayers each and every day and I'll send my guardian angel your way, I'm thinking you may need them a bit more than me.

I'm pleased to hear that the VA pcm you like and he seems on the ball for you. I hope that the VA takes the URGENT AS URGENT. I know the waitng for the tests and results will be pure tortue for you and your wife. Speaking of your wife, how is she handling all of this? She sounds like she's on top of things too and I know that she's there for you no matter what. I hope the VA leaves your PCM remains yours, my PCM of 8 years, is moving in April. I'll be lost w/o her and since I go to a Military Medical Center who knows who will be assigned to me.

Please make sure that you come and open up to us, I know how you're feeling at being weary and tired of all this crap. It seems like it just piles on and on. I'm hoping you still have my email address and phone number. I've told you and I'll say it again, I'm here for you anytime day or night.

Things haven't been to good on my side, there's a updated post in the lupus forum, if you want the news. If not that's okay too. I hope to be able to come and post daily to any of your replies. I'm struggling though, with a medication that's destroying my red blood cells, and with my leukemia I don't make enough of them as it is. I now have a lovely color of blue lips and purple cheeks most of the time, even with 3 liters of oxygen running 24/7. You've been there and understand anemia, it's hard to sit up to type and such. I promise to you though, I'll check for posts from you daily and I will reply with at least a few words to you.

David, please hang in there, I know it feels like someone or something is trying to break you. I feel the same way, but I'm certain that's not what's happening to us. I'll check on this thread in the morning sometime. It will all depend on how much sleep I get tonight, 35mgs of prednisone seems to keep me up late at night. Know, I'm pulling for you and if there's anything I can do to help you, please let me know.

Hugs from your pain/cancer buddy,
Barbara
Posted 2/7/2015 7:24 AM (GMT -8)
I apologise to compiler for assuming it was him you were referring to. when I reread the post, I realized it was a statement of frustration with no one in mine. Trust me his post was just a frank compiler and I am sure he wants the very best for you. I get "hallucinations" now and then,non olfactory and non ingested. Just a rapid mind whose thoughts tend to collide and randomize as in a petrie dish. Analogy weak but delivers well. I figure a 95% batting average to truth, but sometimes…not so much
Posted 2/7/2015 8:00 AM (GMT -8)
Clock: Hell and brimstone and.demons..what??? What are you saying??? This thread has taken a bizarre turn!

Logo-- no apology necessary. You are right that this is just Mel being Mel!

I do care, a LOT.

I just think that David has been shafted time and again by local doctors and "specialists." I won't repeat my litany. You have been here a long time and you know what I mean. I've made suggestions regarding his numerous issues -- I've suggested Mayo and also mentioned his oft-ignored PC.

I don't want to become a lightening rod in this thread.

Mel
Posted 2/7/2015 9:54 AM (GMT -8)
More prayers and well wishes...sure hope you get in for the testing soon...has a good eye doctor looked at your eye? You need a good eye doctor...
Prayers
Posted 2/7/2015 10:12 AM (GMT -8)
David,
Just wish there was more I could do other than listen and pray.

Well, likely I'll have to travel to Florida later this summer. Just might stop by your house on the way back and mow your lawn. :)

Hang in there,
Andrew
Posted 2/7/2015 10:57 AM (GMT -8)
David -

I'm always happy posting to offer you any encouragement that I can. Just wish you could finally reach the point where I no longer had to.

Your journey reminds me of the passage from one of Arthur Conan Doyle's Sherlock Holmes stories: "When all other possibilities have been eliminated, whatever remains, however unlikely it is, is the truth."

This would seem to apply to your situation. That is, as disappointing as it may seem at the time whenever something is ruled out as the cause of your ills, it still means that you have just moved a bit closer to the eventual answer, whatever it's going to turn out to be.

It absolutely must be true that SOMETHING has been causing your difficulties. It must be something pretty subtle, or hard to isolate, or else at least one of your doctors would have found it by now. So patience will be your greatest ally right now. I know that may be getting harder and harder to come by, but it's always possible that the answer may come soon.

With the rest of us continuing to give you our moral support, of course.
Posted 2/7/2015 4:01 PM (GMT -8)
David- So sorry to hear that this may be really bad. But glad the new VA doc is taking it so seriously. Hope things go well for you. Prayers continue. I haven't been around much as my asthma is really worsening. Even my pulmonologist is now sending me to other specialists. Trying another new med now. A different approach to the cough. Hoping it will help.

Go with God!
Posted 2/7/2015 4:01 PM (GMT -8)
The greatest part of the Purgatory story is David, He is unique and thats hard to be in this crazy, wicked world. He is not perfect, he does things his way, pays for it if its wrong , doesn't really blame any one, may be himself if he really gets down, we all do that. His head is as hard as granite, He'll be the first to admit it, but takes responsibility for himself. It ain't easy being David, but he in some counterintuitive way,he plugs on away with a surly grit,….. that NO one can help but admire. My prayers go out to David M.Riley ESQ, along with an admiration that will not be swayed ever…. Accept these words, David... from one crazy sum a beach to another!! Logoslidat
Posted 2/7/2015 7:06 PM (GMT -8)
Good Saturday evening Dear David

Just wanted you to know that you have been thought about and prayed for this night here in Texas.
I wish I could come visit you and encourage you with hope. I know that you are a strong man of faith and that you know you are not ever alone- even in the middle of night. Remember God never sleeps nor slumbers.
I am glad you are getting what seems to be good treatment from the VA.
You friend David
Posted 2/7/2015 9:24 PM (GMT -8)
barb, thanks so much for your special post, I know what it takes out of you to even post at all, will hop over to lupus and check up on you. gentle hugs to you. you are the true warrior, not me.

chart, thanks my friend, even though I am fortunate to have good eyesight, long overdue in seeing an eye doctor, be curious to how my eyes test out

Andrew, thanks as always, you can always be counted on long term, a good sign

81, thanks too. what I have learned the past 6 years in particular, there are all kinds of people with difficult and severe ailments - that simply can't be easily dxd. doesn't mean their problems aren't real, even with the best tests and the best doctors, some things just aren't cut and dry. have had more than one neurologist tell me this, and this is why their profession can be so difficult, so many ailments with similar and conflicting side effects

logo, thanks, I think? we each march to our own tune, something about being true to one selves? What helps me in life, is that I have never been one that gives a rats "a" about what someone thinks about me, or what I like or dislike, or my politics or religion or other beliefs. for good or for bad, I am always me. didn't ask to come into this life, but I am here, and as always, trying to make the best of it, and deal with the cards dealt me.

Thank you, David from Texas. You do know I was born in your rival state of Oklahoma in Tulsa? But haven't lived there since I was 6 months old, so not much of an Okie, lol
worried, thanks, and hoping your asthma improves, I wouldn't want to deal with that either
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