My neurologist is/has all those in his own office. The fluoroscope, ct scan, Baer & vers machine. He takes mostly indigent but not all and he has everything right there, you don't have make another appt and go somewhere else. It is wonderful. He's just concerned about lowering your pain level. And out in the middle of corn field America that is wonderful!

Hugs to all
Gram e

I do see the PM doc and have been several times to see one since the start of all this. The problem is...they're trying to figure out what this new stuff is since I had the last block. The PM doc that performed the block got all freaked out and is the one that referred me to the neurologist. My primary care doc referred me to a new PM doc...but she said that she thinks there's something seriously wrong with me that she can't explain (which was why she recommended me going to the hospital). My primary care doc didn't want to help me because I didn't see his crazy chiropracter buddy next door and told me I had to go through the neurologist. Who got me the appointment at Northwestern. That was a waste so now I've seen the chiropracter against my better judgement and will see the primary care doc on Thursday (tomorrow). I have an appointment to see the PM doc next week, but I am really hopeful that my primary care doc will help me. I strongly believe it is something to do with an infection (possibly in my blood stream). That would explain a lot. But more than anything it's just about going forward to find answers.

Hello there. Sorry about the late check in, I’ve been meaning to write for a while. Glad to hear you got an appt. with a new pain doc. Not coincidently – see below - on Monday I was beginning to look, the day before yesterday, for pain physicians in Chicago - outside of RIC with its strong WC orientation – when I remembered the thread CRPS doctor in Illinois? (and a riff on RIC) http://neurotalk.psychcentral.com/sh...d.php?t=119009 and on checking it out, saw that you posted there on 04.09.10. A one pain management doctor at Rush was mentioned with a glowing recommendations, and I wondered if you had a chance to consult with him? For your reference, it read as follows:

I love Dr. Sandeep Amin at Rush University. He totally gets RSD AND he is a great listener and partner in care. Dr. Lubenow is great too but I have heard that his bedside manner is a bit brusque. This man has helped give me back a big piece of my life.

Also mentioned was Dr. Timothy Lubinow, Rush Univ. Med Cntr 312-942-6631 (but see comment above) and Dr. Renata Variakojis, Palos Park 708-631-5550, both names coming off of a list of ketamine providers. (Please note as well that the theme of the thread was generally down on the RIC.)

At this point, I offer the information for whatever it’s worth.

Now to what’s really on my mind. On Monday I met with my psychiatrist/psycho-pharmacologist who was formally a professor of psychiatry at UCLA . who confirmed my impressions, following your consultation at Northwestern Let's start with a rank guess: the guy you saw at Northwestern is not a psychiatrist. I say that because, without telling you as much, he has given you a Dx of a conversion/somatization disorder without taking the time to explore what would be predisposing you to one of these psychiatric disorders, which is in fact a required element of the diagnosis. In my doctor’s words, “If you go back five years later to any diagnosis of a conversion disorder, you will see that 90% of the patients were later found to have an organic disorder.

On conversion/somatization disorders, see, generally, from the open sourced, no copyright claimed, Wikipedia article Conversion disorder http://en.wikipedia.org/wiki/Conversion_Disorder:

Conversion disorder is a condition in which patients present with neurological symptoms such as numbness, blindness, paralysis, or fits without a physiological cause. It is thought that these problems arise in response to difficulties in the patient's life, and conversion is considered a psychiatric disorder in the International Statistical Classification of Diseases and Related Health Problems (ICD-10)[1] and Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV).[2] Formerly known as "hysteria", the disorder has arguably been known for millennia, though it came to greatest prominence at the end of the 19th century, when the neurologists Jean-Martin Charcot and Sigmund Freud and psychiatrist Pierre Janet focused their studies on the subject. The term "conversion" has its origins in Freud's doctrine that anxiety is "converted" into physical symptoms.[3] Though previously thought to have vanished from the west in the 20th century, some research has suggested it is as common as ever.[4]

DSM-IV defines conversion disorder as follows:

* One or more symptoms or deficits are present that affect voluntary motor or sensory function suggestive of a neurologic or other general medical condition.

* Psychological factors are judged, in the clinician's belief, to be associated with the symptom or deficit because conflicts or other stressors precede the initiation or exacerbation of the symptom or deficit. A diagnosis where the stressor precedes the onset of symptoms by up to 15 years is not unusual.

* The symptom or deficit is not intentionally produced or feigned (as in factitious disorder or malingering).

* The symptom or deficit, after appropriate investigation, cannot be explained fully by a general medical condition, the direct effects of a substance, or as a culturally sanctioned behavior or experience.

* The symptom or deficit causes clinically significant distress or impairment in social, occupational, or other important areas of functioning or warrants medical evaluation.

* The symptom or deficit is not limited to pain or sexual dysfunction, does not occur exclusively during the course of somatization disorder, and is not better accounted for by another mental disorder.

The nature of the association between the psychological factors and the neurological symptoms remains unclear. Earlier versions of the DSM-IV employed psychodynamic concepts, but these have been incrementally removed from successive versions. The ICD-10 classifies conversion disorder as dissociative (conversion) disorder, which suggests the symptoms arise through the process of dissociation

AND

Somatization disorder http://en.wikipedia.org/wiki/Somatization_Disorder:

Somatization disorder (also Briquet's disorder or, in antiquity, hysteria) is a psychiatric diagnosis applied to patients who persistently complain of varied physical symptoms that have no identifiable physical origin.[1] The disorder may begin before 30 years of age and could last for several years, resulting to either medical seeking behavior or significant treatment.[2] One common general etiological explanation is that internal psychological conflicts are unconsciously expressed as physical signs. Patients with somatization disorder will typically visit many doctors in pursuit of effective treatment.

Somatization disorder is a somatoform disorder.[3] The DSM-IV establishes the following five criteria for the diagnosis of this disorder:[4]

* a history of somatic symptoms prior to the age of 30
* pain in at least four different sites on the body
* two gastrointestinal problems other than pain such as vomiting or diarrhea
* one sexual symptom such as lack of interest or erectile dysfunction
* one pseudoneurological symptom similar to those seen in Conversion disorder such as fainting or blindness.

Now, while all of this may sound foreign to your circumstances, I would strongly urge you to read this “plain English” online article, to see how it corresponds with your experience at Northwestern: Limits to truth-telling: Neurologists’ communication in conversion disorder. As you will see, its relevance lies in the letter that will go back to your doctor. http://www.ncbi.nlm.nih.gov/pmc/arti...6/?tool=pubmed

I was advised by my doctor that the primary treatment recommended for theses disorders is cognitive behavioral therapy, which can’t hurt anyone in learning to adapt to pain that’s as real as it gets, EXCEPT AS PERFORMED IN CERTAIN :BOOT-CAMP PROGRAMS OF SUBSTANTIALLY LIMITED TEMPORAL DURATION SUCH AS AT THE UNIVERSITY OF WASHINGTON, OR WHERE THE MANTRA IS “THERE IS NO CURE FOR YOUR PHYSICAL CONDITION.” See, e.g., Cognitive-behaviour therapy for patients with Abridged Somatization Disorder (SSI 4,6) in primary care: a randomized, controlled study http://www.biomedcentral.com/1471-244X/8/47 AND Efficacy of treatment for somatoform disorders: a review of randomized controlled trials. http://www.psychosomaticmedicine.org.../69/9/881.long

And on the matter of the guy’s ruling out CRPS, did he even check your toe nails or body hair? I too didn’t develop the classic symptoms until I was 2 and ½ years into this, but one Robert J. Schwartzman, MD was able to make a definitive diagnosis of CRPS based on such subtle things as “pilo-errection” of body hair. Hint: if you have been shaving your legs, stop immediately, so that one can be compared to the other. Also, no toe-nail polish! And ironically, had the doctor been using the newer “Budapest Criteria,” he might have had no trouble in making a CRPS Dx in the first place, that is if he had bothered to check out your toe-nails, body hair, etc. See Validation of proposed diagnostic criteria (the "Budapest Criteria") for Complex Regional Pain Syndrome. Harden RN, Bruehl S, Perez RS et al, Pain 2010 Aug;150(2):268-74. Epub 2010 May 20, ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...1/?tool=pubmed And for a full comparison if the two guidelines, see, Complex Regional Pain Syndrome: Treatment Guidelines - INTRODUCTION AND DIAGNOSTIC CONSIDERATIONS http://www.rsdsa.org/3/clinical_guidelines/index.html

Finally, I am advised that it’s no shame if someone gives you a Dx of some psychologically induced pain secondary to an underlying and real pain condition. That is NOT considered to be a psychiatric condition per se.

Sorry for going on so, but there was a lot I was trying to convey. I hope it’s useful.

Good luck as always.

Mike

Catra, I am so sorry about your new symptoms and for not responding sooner. As you know, our lives sometimes get consumed with pain...having said that, I truly hope that you find a great doctor and get some relief..sometimes having all of these things going on with no dx, can make life more scary. I always seem to post under mike who seems to be a wealth of information, which is awesome, so all I can offer is my support and understanding to you. Please hang in there, know you have a lot of people pulling for you and I am here if you want to pm me anytime!!!

Thanks so much Mike...I really appreciate everything that you have to say. I read through everything (had my mind spinning a bit to be honest) and it helps a lot to have that information to consider. A lot of the stuff early on in your reply (that I didn't quote above) really helped me to understand better what the neurologist was saying or trying to say. I mostly got there on my own after days of being angry, annoyed, and frustrated...but this sort of puts some backing behind what conclusions I came to after much thought and a calmer outlook.

Now...for the part above. Have not shaved my legs in months (not really up to doing anything at the moment that would require me to worry about things like my legs being shaved...:rolleyes:). No toe nails painted either. But he most definitely did not look at either the hair or the nails that I could tell. And if he had looked at the nails on my CRPS foot he would have really noticed the abnormalities. But I consider that part just his not knowing what he was really talking about...which knocked his credibility down a few pegs for me even though on the other stuff he may be on to something (not sure about that...but willing to consider it).

And I think the key is getting to the right doctor. Gonna drop my primary care after today's visit because it was just ridiculous. And this isn't a reaction like I had with the neurologist or frustration over not having an answer yet...this is something that has been coming for a while but that I was reluctant to do because...well...he's been my doc my whole life. But he told me today that I need to give the NUCCA chiropracter thing a few months to see if it works, and if it doesn't then I "may just be one of those rare birds who can't hold an alignment and [I] may be stuck with these problems the rest of my life." Ummm...thanks doc...but I'm not ready to give up yet. He seems to think that all the possibilities have been ruled out when I think that's impossible at this point. I understand HE believes in this stuff and while I'm willing to give it a shot...I'm not ready to just give up on looking for other answers in the mean time. Literally doesn't want to run any more tests (not even to check to see if it's an infection). He literally said to me that my fevers and stuff are just inflammation related and that once my axis is properly aligned over the next few months then I will be just peachy keen.

Anyway...that's it. He's proven himself to be not only a quack (and an unethical on at that in my opinion) but to also be a dead end. So I called up my boyfriend's doc and made an appointment there for Monday. If I feel comfortable with what this woman has to say and feel like she can be my 'hub' during all this, then she will be my new primary care doctor. I'm 27 years old...not ready to give up on life just yet and waste valuable time on only pursuing one treatment option that to I don't really believe in and giving up on life if it doesn't work out. No sir.

Will keep everyone posted. Thanks so much to everyone for your support and advice. Helps keep me grounded and looking forward. I have my bad moments where I just need to cry or vent...but as long as I can get over those and keep moving forward, that's the thing.

Just a quick follow up, when you see the new doctor, why not go in with the names of the doctors at Rush from the earlier thread?

Those would be:

Sandeep D. Amin, MD http://rush.photobooks.com/directory...ict_id=0005530 AND

Timothy R. Lubenow, MD http://rush.photobooks.com/directory...ict_id=0002270 (He does look a little imperious, doesn't he?) AS WELL AS

Renata Variakojis, MD, Palos Park IL (708-631-5550), about whom I was able to learn very little.

That and I concur that this "expert" at Northwestern was clearly incompetent if he didn't look at your toenails, unless he was so hide-bound that he was reflexively adhering to the current IASP diagnostic criteria for CRPS, and from what I can tell most of the people who do that significantly supplement their income through defense/insurance company expert witness work!

Mike

I will definitely bring those names with me. Thanks again!