I'm NOT trying to steal the thread, but since I posted (above, previously) in this thread, and it's on the same line, I figured I'd continue here.. Hope that's OK.

I did finally see Dr Knobler (Pronounced without the 'K').

And, had the office, himself and his wife to myself, for private conversation about my situation.
He is such a wonderful, smart neuro! He and his wife have three sons, and they're such a great family! If half the families in this country could be like these folks, we'd be a FAR better country!

After much discussion, and him listening, he didn't say anything about it, or even add any new meds, (I''m sure he realized how "delicate" I am right now, and didn't want to upset me further) but added to my slip of dx's , Something called "Epilepsy, Traumatic", with a diagnoses # that I can't quite read.

I don't really know what this is, but I apparently have it.
It's headaches when I try to think, and "scrambling" of info when I try to think. This happened to me in court, under questioning, I just "bugged out".

So, he will write something for me, if my attorney, if I find one, will need it.

Does anyone here have this, or know about it, I suppose I might need to go back to the TBI section, or another.

I just wanted to let all you wonderful, supportive and loving folks know what happened.

Thank you all, for you kind and loving support!



love,
Pete
asb

Waiting to see what response is from Doc, cz. Please let us know what happens.
Are you still have the mini seizures?
love,
Dew

DEW,
I hope you're not responding to me. Or, if you are, it may be mistaken.
I have no tests to do, or anything else further, except my next appt. with Dr Knobler.
If you are asking someone else. I apologize!

Love to you!
Pete

Sorry DEW!
Maybe you are speaking to me.
If so,
I've finally got my answer!

I used to be a "professional witness" for many things in my profession.

Now, I cannot help but get "tripped up" in testimony!
Ask me many questions, rapid fire, and my brains just "spins out"!

Now, Dr Knobler has me covered for that, Understand, he hasn't "covered me" for the sake of "covering me".
He has the facts, to know,
that I
actually just
"screw up" under hard examination! (questioning).

I'd never, in my wildest dreams, think that there was an explanation!
But, back in the 80's, I remember thinking, there is "No Way" these doctors can Dx my burning pain!
If you need the "Best Care",
You must be able to cover the "Best Doctor's" Fee's.
I see my doctor's fees,
as being as important as food, light, rent, etc.....

He is a Good, God Fearing man,
and I respect him,
with all of my heart!


LORDWOOD!
Are you here?
Are you listening?
I so hope you can get to see, Dr. Knobler!


Love to all,
Pete
asb

cz -

Sorry to be late here, but yesterday, by coincidence, I had a brain MRI with and without contrast on a Tesla 3 machine, which is supposed to be able to measure the corticol thickness of the/my anterior insula (AI). See, "The Brain in Chronic CRPS Pain: Abnormal Gray-White Matter Interactions in Emotional and Autonomic Regions," Geha PY, Baliki MN, Harden RN, Bauer WR, Parrish TB, Apkarian AV, Neuron 2008; 60: 570-581, full text at http://www.rsds.org/2/library/articl...aliki_etal.pdf.

But why I write is that just as the constrast was being pushed into my arm, I was bombarded with a rapid-fire high-pitched "pinging jackhammer" sound, which was definately a first for me. I later asked what it was, and found out that it's an actual real-time blood perfusion test, previously the province of PET scans and their accompanying isotopes. See, "Chronic Pain with Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assesed by Single Photon Emission Computed Tomography," Fukui S, Shigemori S, Yoshimura A, Nosaka S, Reg Anesth Pain Med. 2002; 27(2): 211-213, full text at http://www.rsds.org/2/library/articl..._Yoshimura.pdf. (And all this at a university hospital where both the facility and the radiologist are providers under just about any insurance coverage.) And just where do we cross over into fMRI territory?

Do you know by any chance if you had a profusion (rCBF) study done? If not, you might want to think about adding it to the list.

Lastly, while it appears that only NYU has a Tesla 7 machine available for clinical use (the rest are all in departmental labs) the University of Illinois at Chicago has been apparently testing a 9.4 machine for a couple of years, that is supposedly going to be able to image brain metabolism at the cellular level. And while there doesn't appear to be independent verification readily avilable for all of the information posted on this site, it makes the thing sound like quite a toy: http://thefutureofthings.com/pod/113...ngest-mri.html

Mike

Wow Mike, that is unbelievable! I don't live far from you and I can say there are not many 3T units around. I can't even imagine a 9.4T scan. I'd love to see some of those images.

I am new to Neurotalk and I have a fairly recent diagnosis of CPRS/RSD. I want to thank you for this discussion. I am on so many meds is rediculous, so I am not discounting the fact that it could be one of the many.
Yesterday toward late afternoon, I had several episodes of a wierd sensation in my head. I had a sense of presure on the lt/rt of my head at the temples, then I would ear a popping and sizzling sound, then the room would spin. It got so bad I sat on the floor. I got really sick at my stomach. I really thought I was going to pass out. Just as I was feeling better, my husband came home and took me to urgent care, they knew nothing about RSD. Today I have a funny head ache and I feel just a little topsy. Does this sound familiar to any one? Thank you, Yukiko

• I had a seizure when I first having very I'll and sickness . It was 3 years ago on Christmas. The doctors said it was from stopping Xanax and my body went in withdrawl I guess cause it fit the situation. But I knew it wasn't withdrawl I used it for a week cause I was in such agony when I was awake. Thanks to reviewing your post I now know it was rsd. I also see dr Swartz Ann for full body rsd. I didn't tell him I had a seizure 3 years ago. Good luck and thanks for that information. I wishi new about this site years ago and also that I knew it was rsd. Didn't find out what I had for over 3 years & 15 drs. Dr Swartzmann knew I had it as soon as he looked at me and asked one question. Good lock and I love all of my rsd family

Jimbo,

Of all of the symptoms I have endured the balance and falls are right up on there on the misery scale. Sometimes I would walk through a room and duck my head because I thought the ceiling was going to hit me. Part and parcel was not being able to judge where something was when I reached for it. It was clear to me that proprioception issues were worsening as my CRPS progressed. I now have a service dog who alerts me to falls before I even know they are coming. The thing that greatly improved my balance, however, and has reduced my falls is tDCS. Prior to tDCS I was keeling over sometimes several times a week. I feared that it was only a matter of time before one of those falls either ignited a new source of CRPS, or caused severe injury. Although I still fall I have not fallen in two weeks.

Hope this helps!

The balance problems and the falls are terrible. Those started for me this year after the RSD spread and when I was having hallucinations and acting all weird on top of the balance problems and the falls that was literally a living hell. I was told by the doctors that I could not be left home alone so my mom came to live with us for a while (that was a whole other sort of hell...lol). I've never had the seizure type thing in conjuction with the falls...but I do know how scary it is to not be in control of yourself. My boyfriend tells me some of the crazy things that I was doing and I have NO memory of them at all.

I still have problems with the balance...takes a lot of concentration to make my feet go where I want them to go. I won't leave the house without my 4 wheel walker...definitely would be far too risky. Even with the walker I sometimes can't control what my feet are doing (especially if the pain starts to get up to that 9-10 level)...but at least I feel less likely to fall and can just sit down on the seat if I don't feel right.

So sorry for everyone who has to deal with these things. It's good to know that I am not alone because when this all first started happening I didn't know if it was the RSD that was causing it because all the doctors were telling me it is not a symptom of RSD...but at the same time I wish that no one had to suffer with these things.