Neurologist Visit

Had high hopes on finally getting a decent neurologist. Have had bad experiences with at least 2 prior, if not 3.

Well, this guy seems like a winner. Of a long 2 1/2 hour initial visit, of which 1 1/2 hours was spent one-on-one with the doctor, we are off to the races.

Never had been asked as many questions, and such odd questions as did this doctor ask. That, and an extremely neuro-based physical exam.

He feels that all my other doctors are clearly missing something(s) important, and absolutely not connecting the dots. I agree. He feels there is one or more major issue being missed, and is determined with thorough testing and scans, he will resolve it once and for all.

This is just for starters, and much more will be coming. Having a new brain MRI done without/with contrast, a MRI of my hip, upper leg, thighs (he said the burning/stinging/numbing of that leg is either the result of a tumor, or increasing radiation damage to the main nerve bundles there. He has ordered some weird and expensive and rarely ordered genetic based tests to look for rare pass-along type diseases that can be easily missed.

Today, had a battery of blood work, most of which had not been ordered before. I am also scheduled for a sleep-deprivation EEG, where I will have to stay awake one entire night (not hard for me to do) and then come to the hospital at 7 AM.

He's dividing potential neuro problems into 3 segments. The leg issue, the hand shaking and dizziness, and my on again, off again history of olfactory hallucinations. Said it may be 3 unique issues, or they may have a common source.

Some possibilities is that I am dealing with a rare form of epilepsy (my oldest brother is a severe level epileptic) doctor said there are varieties that are difficult to detect and diagnose. He was concerned with the large veins on the right side of my neck (forget what they are called) that feed blood supply to the brain. Another MRI will be ordered to look at those after he looks at the brain scan. He wants to rule out Multiple Melnoma (think I have that right). And for the 3rd time, says some of what I have going on is associated with MS.

He's also concerned about being a stroke risk and possibly having had an undetected TIA or even several.

His thoroughness is what impressed me the most. This was serious business to him, and he had his entire staff busy working on the arrangements, to be done sooner rather than later.

Such a refreshing change of pace for me. He has many more conventional neuro tests that he wants to re-run once some of the other tests/scans are available.

Before I forget, he stated that olfactory hallucinations are among the rarest manifestations, and are usually attributed to brain issues, or rarer forms of epilepsy. I first started getting them around year 2000. They started happening again just months ago, I never know when they are going to trigger.

Will keep posting whenever I get any meaningful results.

He, like every other doctor in my path/history, remarked how dangerous radiation really is on the body. He agreed with the general findings, that I have extreme internal radiation damage, and he too said, it may continue to worsen, even though I am fully 7 years out from my last event. He had deep concerns about toxic exposures I had both when in the military and during my early years when I worked in machine shops. Said my heavy exposure for formaldehyde was a likely source of my cancers.

Anytime I can make forward progress, is a good day to me. Though my schedule book is getting very full again

thanks chas, you gave the correct term to those arteries, I was too brain dead last night when I posted, lol.

Hope you continue to do well

So glad you ran into a Dr that is 1) interested, and 2) willing to do the testing you need. I pray he'll actually "stay the course" with you and find you some relief -- even if nothing can be done, I've found that knowing "what something really is" to be reassuring!

David,
Glad to hear that this doc is off to a good start. I think you are referring to multiple myeloma (not multiple melanoma). It is a kind of blood cancer (mostly in the plasma cells). It can damage kidneys (I'm thinking of the bleeding issues you had not too long ago, and bones, esp. spine, hip, shoulder (could possibly help to explain your leg issues and some of your other pain issues). Glad he is doing a large variety of tests (unlike other neurologists you have seen who seemed to jump to a conclusion and only test to support that idea).
Prayers continue.

Spent 3 1/2 hours at the VA today, and a team of doctors have dx'd me with a term I have never heard before. In conjunction with the PTSD, they said I am dealing with Double Depression, and a pretty serious one at that. It's kind of a game changer, and will make all future appointments with the VA more complex. I had to look this one up on the Internet to fully understand the implications. I have new meds to add to the mix in the early stage of treatment. They even talked to me about multiple ECT events if the meds don't work as intended. That really scared me, didn't even know they still did Electric Shock Treatments any more. However, these days, the patient is put under when they are being done, and feel nothing. Really hoping it doesn't lead to that.

They want to see what the neurologist comes up with after all the tests and scans are completed, to rule in or out, any medical or organic reason for some of the problems.

Looks like I am finally getting some answers, but not sure I am liking what I am hearing. However, as I have always stated here, I would rather always know, then not know.

Only have the 2 grandkids (oldest son). Boy 11, Girl 14 (just started high school), hard to believe. My other DIL, though young, has serious medical issues too, probably will not be able to have children, and my beloved daughter, now 35, has extreme rare medical condition, where 50/50 chance she would die if she ever had childbirth. Not willing to risk my only daughter to crank out a grand kid. So probably just be the two for us, and that's ok.

Thank you, Jaybee

Can't really discuss "purgatory" as it's intended for my long term use of it as nickname, as it would involve some pretty technical religious dialogue.

Yes, it can be a "purging" or cleansing, but it can also be a place, or even a state of being, for the sake of a better word, "limbo".

I live in two distinct realities. In the first, and I assume it's the "real" world, I spend 18-20 hours awake and existing (living) while facing continuous pain. Even on the best days with all the meds working, lowest pain level is a 4. On most days, it drifts to 7-8 regions, and can stay like that for hours. In the second world, it's a world of horrific nightmare and deeply troubled sleep, it's a place of constant toil and conflict. The mind demons when I sleep have the channel selector, and will switch the torment to whatever it thinks will get to me the most.

Sometimes, the dreams are emotional heart-breaking events, others are end-of-the-world stuff, in particular volcanoes and/or tornadoes up close, another repeat themes is my father being alive again (been dead for 23 years) and he's being his normal cold, heartless, and abusive self, and finally, a final common thing - is me being killed or dying. You name a way of being murdered, and I have experienced it in the past year. Stabbed, shot, throat slit, thrown off buildings, ran over, etc. And in those dreams, I do die - all the way. I feel the life ebb out of my body, and I return to a dark and empty nothingness, and feel completely alone from the universe. It's so real, then I wake up terrified. Sometimes, despite trying to stay awake at that point, I drift off and return to the exact place I left off.

So its world 1, or world 2. I really don't like either, but its the lot I have drawn. I have, and I am, seeking professional help - thus recently acquiring the moderate-to-severe PTSD dx, and more recently the dx of "Double Depression". Not sure I am depressed, just tired of being tormented around the clock with little to look forward to.

Oh, I still have metastatic PC, and the joys of all the disabling damage and side effects. But I am suppose to be happy to be alive, isn't that what everyone says?

Aimzee, thank Ron for me, hope he's back on the mend again.

You can read of my latest cancer dx. and update that I started tonight on a new thread.

Wish I had better news to report