I had my long awaited neurologist/specialist appointment yesterday. I had waited weeks for yesterday as he is so booked. I've told myself all along not to get my hopes up, and to go without any expectations...
(although way down deep I was hoping for a miracle as we all are..way down deep..)

He is a friendly doc, and spent more time with me than I thought he would..close to an hour and a half..much of that was reviewing my history reading some reports and reading over some prepared notes I had..

He intimated that RSD rarely spreads although it will show some mirror effect..
When I heard that, I quietly gulped......in my mind I was thinking.."but what about everything I've read...what about all my friends on the boards"...while at the same time thinking.."could he be right?? Am I out of the woods?"
Of course, I was dumbfounded and didn't say ANYTHING!!!!!!!!!!!!!!!!!

I made a list of treatments I wanted to pursue...this is the part that devastated me
lidocane infusions?...."well, that could help but know insurance would approve it"

bier block to the left foot?......"well, hardly anyone does them anymore and insurance probably wouldn't approve it

outpatient ketamine infusion?......well, that's like a street drug and causes hallucinations.....................

By the end of this dialog, I was feeling defeated..

I was not happy with my current pain management doc because she is not an anasthesiolist and with this appt., I thought I was giong to get some help!!

He said he does consultations only, and I can come back in six months........

In the meantime, I feel doctorless and I'm sad to admit, a little hopeless..

He wants m to go to my own doc (my own insurance through work) for a work-up of suspected neuropathy....
I wanted to scream, "this isn't unrelated neuropathy!!! This is RSD !! Helppppp!
He advises I discontinue the monthly shots into the nerves of my foot..(they were causing a terrible flare....and in retrospect, could have made it worse..)

He suggested I replace the neurontin (terrible weight gain) with ultrum (any of you on ultram?)
...he doesn't think any more lumbar blocks would help....
I wanted to scream, "well, what the hell is left????"
This is a W.C. case and I know they won't approve yet another different doctor consultation........
A terrible vice-like grip and burning, biting pain kept me up last night...and I face the work-day ahead....
I am so grateful that all of you are out there to understand...I'm not in a very good place right now.......
Hope4thebest

Hi hopefull
I do understand [as well as others here], I dont know how many different dr's youve been thru with W/C ,but your always allowed a 2nd opion by law,,and uasally W/C has about 3-5 dr's in your area[your present dr knows who they are] so you can see another one ,,but youve got to get you present dr to reffer you,,as for the injections in the foot,,,chances are [like my condition] if they are causeing a flare then I woulld stop,,i agree with the dr there,,If your no longer in SMP and your in SIP,,then the injection in the foot or blocks in thye back will more likly aggravate the rsd and can even spread it,,and my opinion on the med change is this,,,neurontin calms down and works on the nerves system [nerve pain,,flares] it actually does inter act with the nerves and in alot of cases is a positive med,,where as ultram,,is only a pain med,,it could interact with the nerve ,,but ive not heard of it,,its a pain med,,and a weak one at that,,but alot of people do get relief,,and exercise is your friend,,and the least amount of meds you use is always the better route,,good luck and stay positive,,,The Lord is watching over you,,,,,,,bobber

HI just wanted to say so sorry this has happened to you, I went through several doctors like this prior to being diagnosised and have met many since in er rooms. Its a nightmare. keep going unitl you find a competent doctor to treat you , its the only way to survive.Hang in there. God bless cz.

Hi
I am so sorry that the appt. worked out like that. I could tell by your post how much you were looking for a good result.I do take Ultram but only for breakthrough pain. It's OK just makes me tired. I find I try not to take it in work or if I do not until late in my day. It also makes me a little light headed but you may not have the same results.
Just know their are people out there rooting for you. I'll keep you in my prayers.
Hopeful

DON'T EVER GIVE UP!! Ever, ever, ever!

The guy sounds like a typical neurologist whose ego is bigger than his brains. Bummer.

Send a letter to his office requesting a copy of his report, so you can see exactly what he wrote to WC. There's a reason WC picks these guys. If he screwed up your report in any way you will want to write a rebuttal for your files to cover yourself. Did you really think WC would pick someone who was going to recomend they spend $$?

And you are entitled to your own doc for a 2nd opinion. The trick is to find your own guy and make sure he's a really good one. I got incredibly lucky because the parents of a child that had been sick for years with RSD (the boy actually went to Germany for the coma) told me who to call in Boston. How can you find a similar doctor for yourself? Is there an RSD support group in your area? The RSDSA.org has a list of them. Maybe you could find the closest group and make some phone calls. Find out who the best doctors are that take care of RSD patients. I think that the RSDSA web site has some info on that, too. FMichael has provided links to search engines that will list board certified PM and Anesthesiol by zip code (or something like that). Or call the PM center of the BEST teaching hospital closest to you. I used my United Health insurance for many of my appts with my doc, including the initial consultation and the first block, and my attorney had to get them reversed to WC at a later date. I just did what had to be done.

You have to follow up on all the doc's suggestions - like the neuropathy. I had to have Rheumatoloy testing done, because a doc said so, even though I had had it done 6 or so years ago and it was all negative. It came back all negative again, like I knew it would. But my twin sister has RA with lupus overlap and once they saw that the docs wanted me tested. I'm sure it cost a small fortune for all the bloodwork and the 2 specialists visist, not my problem...

Jim Broatch from the RSDSA can provide you with a list of who does ketamine. That's how I found out. I made my own phone calls and sent out packages of info on my own (with the help of my PCP office and PT, who sent out their stuff as applicable). My doc in Boston had to send a referral for me to the doc in NYC, which he did. If it weren't for the support of all the people taking care of me (and that have taken care of me in the past), then I probably wouldn't have been be where I am today. Of course, the ketamine hasn't been approved by WC yet, it will take a few months and my attorney assured me we will end up in court over it. (I can't pull out my United Health for that one, they don't cover it.)

Ultram is a synthetic opiod, I was on it when I was first injued and didn't want to take any narcotics but was in pain and needed something - I was still working. It comes in different doses. Its OK. Do you have a PCP? Mine writes my pain meds.

BTW, I made a timeline, and have always kept monthly summaries of my case since I was diagnosed, including major changes in my symptoms, drug changes, docs, etc. My docs find it very helpful.

My appt. with Schwartzman in Philly is in June 2010, I made it in Dec 2008.

By taking control of the situation, you might stop flaring. We always expect a lot, and wait and wait and wait...and then get blown away when these guys are jerks. So sorry that happened to you.. try to re-group, and make a list, and then maybe go to RSDSA and start over with your OWN doc... who will be vested in your interests.

Good luck, and please take it easy. We are all thinking of you.

XOXOX Sandy

I'm sorry your appointment was so disappointing. I know the feeling (as we all do) It took me 9 years and 16 doctors to get to the managed state I live in. In the beginning it is so frustrating. Take control of your care and demand a 2nd opinion. Keep a list of your meds the one you have taken and why they didn't help and the ones you are on. Keep it as a spread sheet and update it when needed.

As frustrating as this monster is for all of us it is just as frustrating for our doctors who know they can't help. They go in to medicine to help and RSD is so complex and so not understood by Western Medicine. Some doctors are intimidated by what they don't understand. I had a doctor just be upfront with me and tell me my condition was too complex and he didn't have the time it would take to help me. I went to the car and cried.

I know the awful feeling of disappointment after you see a doctor who can't help. There are doctors who can help and you will find the right one. Keep your head up and don't give up.
Take care,
Sherrie

Hi Hope4thebest,
I'm so sorry you went thru that disappointing experience. How frustrating.
Please don't give up-there are knowledgable, caring Drs. out there that will be an answer to your prayers.
For me, it was 4 years before I got diagnosed. I got RSD following surgery.
It's strange, but I got my last Dr. of 5 years out of yellow pages. He is wonderful-a 3 in 1 Dr. Neurologist, Pharmacologist, & Psychiatrist.
I attended the RSDSA annual meeting here in AZ this spring. Jim Broach is a helpful kind person. Let them help you. On the website there is a space to put your zip code in. Then will come up name of support group leader and phone number. The group have experience in the area for good RSD Drs. RSDSA.com '
Also calling pain management centers, you can ask if they have a RSD specialist.
I was diagnosed with rheumatoid arthritis even tho the tests were negative. I decided to fly to a sports injury orthopedic group I knew were well known in a college athletic town. I few 2-3 states away and saw the hand orthopedic specialist. He looked at my hand and said RSD within 1 minute. He gave me 20 page info in RSD. Very compassionate. Set me up with therapy next day. Ordered a Tens Unit same day. And same day sent me]to nuclear med test, which was positive for RSD.
I can't tell how how many Drs. I tried, but lots. It's very discouraging, but good Drs. are out there.
I've had the flu,chest infection for 2 months. Went to gp Dr. down the road, got 10 days antibiocs, but a few days later came back. So I called for appointment and mentioned to the Dr. when I got over this, I wanted a flu shot. He says ' you don't need to wait, you can have it now!!!!!!!! Can you believe that. I don't think it is a healthy thing to get flu shot while having fever, and infection in your chest, lungs. I was dumbfounded- felt I don't want to even go back to him. I think I will see my internest and get x-ray.
You will find a good Dr. Please don't give up. The local support groups do know who is good in town. Or chronic Pain Drs.
If you know any nurses in town, they hear things about Drs. Attorneys also know who top docs are. The truth is not all Drs. even have a clue about RSD. A website I learned a lot on is rsdrx.com Dr. Hooshmand is retired, but
I got a good education from it. Sometimes, we get overwhelmed from reading too much and need to take a break. We can get overwhelmed about the magnatude of this 'thing' in our life. It is a life changing event, and wc is fighting something we are not used to. Counseling can be a life saver.
Please take care, and keep in touch, your friend, loretta soft hugs

Thanks for all your good thoughts and support....and sharing your experiences...I barely had sleep and it was a hugely busy day at work...I visited the message board while at work, (which I rarely do, I might be "screened") and your messages sustained me through the day.

The doctor was a very nice man..it's just that he approached the appointment with his perspective.....he's probably right about the insurance denial.......as I had posted, he did spend a great deal of time with me...
i was so disappointed, though, wih his ketamine comments...........and that this was only a consult...I thought i would be able to transfer over to the university hospital team... Does RSD cause neuropathy???
The irony is that I chose the doctor, as I had done research and he seemed very competent and experienced, which he is....
I am sorry, if in my e-mail of disappointment, it came through that he was not an attentive doctor. He is...

He offered to send me a copy of his recommendations..which includes another look at my foot/leg by another foot specialist...

This was my second opinion, so now I'm not sure how to proceed..I will make an appt. with my own doctor, to check out other issues as he suggested, and take it from there...



I am under a of of 'life' stress right now, and I know my pain level is elevated...also I stupidly walked to his office from my car instead of using the mobility scooter...I also stupidly walked to the class on Saturday from the parking lot instead of using the scooter....I have greatly aggravated my foot and leg and am in a painful, swollen,burning flare....

these flares are so frightening because you don't know if they will escalate, or stay the same...(unbearable)..I hope the pain stabilizes
I have to apply the skills I've learned to deal with the pain in a relaxed, mindful way..

Thanks for being there to listen...especially as I was feeling the RSD loneliness at work....I truly felt the group hug..I know you know how much we all need that embrace....and Sandy, I won't give up xoxoxox
Hope4thebest

You can do it, yes you can hope4thebest. You know we are all here to help and support you in the way you need. Please try not to let this disappointment affect your courage and ability to deal with the matters at hand. That's "YOU" and I'm sending you a big collective group hug tonight.

Dear Hope4the best -

Sorry for being the last one in. Since you mentioned in a previous post that you would be going to UCSF to see your specialist, I thought I would give "The Farm" a try. Turns out that while there is some amazing work being done by anesthesiologist and others associated with Stanford, almost all of them work at the Stanford affilated Veterans Affairs Palo Alto Health Care System, which treats, well, veterans. And just because I can never resist a good abstract, check out this one:

Glucocorticoid inhibition of vascular abnormalities in a tibia fracture rat model of complex regional pain syndrome type I, Guo TZ, Wei T, Kingery WS, Pain 2006 Mar;121(1-2):158-67.

Physical Medicine and Rehabilitation Service, Veterans Affairs Palo Alto Health Care System, Palo Alto, CA, USA.

Tibia fracture in rats evokes chronic hindpaw warmth, spontaneous extravasation, edema, allodynia, and periarticular bone loss, a syndrome resembling complex regional pain syndrome type I (CRPS I). Glucocorticoids such as methylprednisolone (MP) are probably effective analgesic and anti-edematous agents in patients suffering from CRPS and this study examined the effects of chronic MP treatment in the rat CRPS I model. Bilateral hindpaw thickness, temperature, and nociceptive thresholds were determined, and the hindlimb bone density was measured using dual-energy X-ray absorptiometry (DXA). Spontaneous cutaneous extravasation and substance P infusion evoked extravasation were determined using an Evans blue vascular permeability assay. After baseline testing, the distal tibia was fractured and the hindlimb casted for 4 weeks. At 2 weeks post-fracture MP infusion was started (1 mg/kg/day for 28 days). The rats were retested at 4, 6, and 8 weeks post-fracture. Hindpaw edema and warmth after fracture were reversed by MP infusion and these effects persisted after discontinuing treatment. Furthermore, there was an increase in spontaneous protein extravasation and an enhanced substance P evoked extravasation and edema response in the hindpaw at 4 weeks that was inhibited by MP infusion. Glucocorticoid treatment had no effect on the allodynia, hindpaw unweighting, or the periarticular bone loss observed after tibia fracture. We postulate that post-junctional facilitation of substance P signaling contributes to the hindpaw warmth, edema, and the enhanced spontaneous protein extravasation observed in this CRPS I model, and that the anti-edematous effects of glucocorticoid treatment are due to inhibition of post-junctional neuropeptide signaling.

For the rest of us, there's the Stanford Pain Center http://paincenter.stanford.edu/ It's now overseen by by Sean Mackey, MD, PhD, Chief, Pain Management Division, who co-authored Pharmacologic Therapies for Complex Regional Pain Syndrome, Mackey S, Feinberg S, Curr Pain Headache Rep. 2007; 11:38-43, full test at http://www.rsds.org/2/library/articl...harma_crps.pdf

And here's a page about goings on in Dr. Mackey's lab: http://snapl.stanford.edu/ as well as a nice summary of one of his recent articles, Fibromyalgia Symptoms are reduced by low-dose naltrexone: A pilot study, Jarred W. Younger and Sean C. Mackey, Pain Medicine (2009) http://snapl.stanford.edu/research/ldn.html an issue very much of the hour, to be sure.

That said, when I went through the Pain Management Center's site, I was struck by the fact that only Dr. Mackey had published or listed any particular expertise with CRPS, and I don't know how easy it would be to get into see him. That and I'm not sure that everyone ther plays for our team, where the Center's hottest clinical professor, Timothy Dawson, M.D., identifies himself as a "Qualified Medical Examiner" on his personal website http://www.norcalpaincare.com/PhysicianProfile.htm and another lists herself as an employee of Limerick BioPharma, Inc. http://med.stanford.edu/profiles/pai...endye_Robbins/

And while Dr. Makey profile on the Center's site provides what sound like cool areas of cuurent research http://med.stanford.edu/profiles/pai...y/Sean_Mackey/ I note that the first study listed is being undertaken with two other principals, one of them being the amazing now 43 year old boy genius of neuroscience, Christopher deCharms, among other things, founder of Omneuron, a life sciences company focusing on novel MRI technologies http://en.wikipedia.org/wiki/Christopher_deCharms now Dr. Mckey's principal area of interest as well.

It's all just so Stanford. But then so too are three of the course listings of its Department of Medicine:

MED 272B. Biodesign Innovation Core: Concept Development and Implementation
(Same as ME 368B, BIOE 374B, OIT 584) Two quarter sequence. How to take a medical device invention forward from early concept to technology translation and development. Topics include prototyping; patent strategies; advanced planning for reimbursement and FDA approval; choosing translation route (licensing versus start-up); ethical issues including conflict of interest; fundraising approaches and cash requirements; essentials of writing a business or research plan; strategies for assembling a development team. May be taken alone (2 units) or in combination with the project component (4 units). Prerequisite: MED 272A, ME368A, or BIOE 374A.
2 to 4 units, Spr (P. Yock, J. Miilroy, S. Zenios,T. Brinton)

MED 275. Introduction to Biopharmaceutical Innovation
Open to all students. Biotechnology and the pharmaceutical industry. Topics include the biopharmaceutical industry, historical trends, and experiences; research and development; intellectual property; drug approval: regulatory issues and agencies; business development; marketing; manufacturing; capital structure and financing; careers in biopharmaceutical industry. 2-unit option, lectures and weekly assignments, MED or S/NC grading only. 3-unit option, including a group project and final presentation, may be taken for a letter grade. May be repeated for credit.
2 to 3 units, Win (P. Gardner)

MED 276. Careers in Medical Technology
Career tracks in biomedical technology for medical, life science, engineering, business, and law students of all levels. Industry professionals describe career tracks, current roles, and industry perspectives. 2-unit option, lectures and weekly assignments, MED or S/NC grading only. 3-unit option, including a group project and final presentation, may be taken for a letter grade. May be repeated for credit.
2 to 3 units, Spr (P. Gardner) [Emphasis added.]

http://medcatalog.stanford.edu/php/c...st.php?DNo=831

Sorry in the end that I couldn't have been more helpful. I was honestly hoping to generate a better option for you. (At least I hope you are mildly amused, somewhere in the realms of dark humor.)

Mike