Doctor runaround
 

So after trying to get ahold of my neurologist since Thursday last week I finally got a call back today from his assistant. They got my records from Northwestern and wanted to know if I was following up with a neuro psych. I was very confused because while the guy at Northwestern mentioned that he was going to put a recommendation like that in his report, he said that I was supposed to follow up with my local neurologist to go over the recommendations. The local neurologist doesn't want to see me. While I sort of understand that if it's not neurological he might not want to waste his time with me, what I could not understand was that they wouldn't even give me a referral or anything. They made it sound like the guy at Northwestern wants me to see a neuro psych there and any of them would be fine. Well...if that's what he wanted then why didn't he SAY that instead of saying, "Follow up with your neurologist in 2 weeks after they get my report."

I guess me point is that if I was supposed to schudule a follow up at Northwestern with a neuro psych then I would have done it on April 1st before leaving Northwestern instead of waiting 2 weeks (and I didn't actually wait two weeks, I called earler to find out if they got the report earlier and then was told Northwestern had no record of me ever going there), then not getting a call back until today just to be told to make an appointment with someone else at Northwestern. And my fear is that I call Northwestern and they say that I need a referral from my local neurologist and then I have to wait a week for that and then another 3 weeks for the appointment...it just seems INSANE!

So I don't know what's going on. I'm going to wait until I see my new primary care doc with the test results from the EMG and talk it over with her before I schedule any appointments. It should be this week so it's not like there will be any delay. I think I will call the neurologist's office back and ask for a copy of the report sent by Northwestern. That way I can bring that with me and see what she thinks of it all (and if I need the referral then maybe her office can do it). They called me with results from my blood test and I guess there were some abnormalities that she thinks could be caused by a virus or infection. I am SO glad I have this new doctor...everything there just seems to work the way it is supposed to and seems very professional. So far every other experience I have had with doctors since December (and the new problems that started in January) has been on ridiculous experience after the other.

It may just be easier for your new doctor to request your medical records. Also I am sure she can refer you to a new neuro doc. Don't let all of these goofs stress you out anymore, that is one reason you found a new doctor!! She sounds like she is willing to go the distance, so let her get what is needed, they can't refuse her. (you may have to sign a release for each place you have records, but so worth it.)

good luck!

Hi. The recommendation for neuro-psych is just to support a Dx of a "functional" condition, but meanwhile the clock is running on some other therapies.

I would do two things, (1) line up appointments with other specialists - such as the names that have been discussed at Rush - ASAP and (2) exercise your legal right to contact the medical records office at Northwestern and get a complete copy of your files. (No one is even likely to know that you did that: at a place of any size - at least in California - those requests are handed at a purely clerical level.) And if your new doctor believes that your neurologist is the bozo he appears to be, you should also make a written demand on the neurologist for an unredacted copy of your treating files, along with his notes and correspondence pertaining to you, as wee as all correspondence and reports from third parties.

Seriously, I can't stress the importance of seeing a CRPS specialist ASAP and would suggest starting perhaps with the junior of the two staff members at Rush (whose name escapes me right now). In other words, please don't be pulled back into the "referral economy" of letting your new primary care doctor sending you to his or her neurologist. Of course, if your doctor sees something unrelated, that should be pursued as well, but only on a parallel track.

You need to be evaluated by a treating CRPS specialist, trained to pick up such subtle sympathetic dysfunction as "pilo-erection" of body hairs.

Sorry if I seem to be in a rant, but I am seriously impatient over your lack of adequate care and treatment.

Mike

I know you're right Mike. Now that we've started to get these other tests run and are finally moving again I am going to really push to see the docs at Rush ASAP. I am sure the new doc will be more than happy to help me with getting to see a specialist at Rush for that (which is important whether this 'new' stuff is related or not). I am more frustrated than anyone over the lack of competant care. I think between my idiot PM doc that performed the blocks in January, the neurologist HE referred me to, and my stupid PC doc I really got some of the worst care over these past few months. It makes me angry, and yet I can't help but blame myself for putting up with it for so long and buying the whole, "These things just take time." BS that they kept telling me. But I am over that now.

Dear Catra

I feel like i am in Virginia living out a similar situation to you. I went to see a new neurologist 2 weeks ago because after careful screening they said they could help me and give me a better medication than what i asked for. I have a unique swelling problem on my abdomen. Anyhoo...after using all my physical energy to get to their office....the whole thing was a waste of time...they didnt have anything to address my conditon and would not use the drug i asked for.

So then they said they would send me 2 hours away to one of the University hospitals in DC. I waited 2 weeks to be respectful and give them time to help me...i call them back today to find out they havent done anything. So they asked me if i wanted them to call...I said no i would handle it from here so i can interview the doctor and look him up online ect. I saw a new pain doctor. i had the appointment for a month. so i go when my meds are do...they tell me they dont write meds on the first visit which the recptionist never told me over the phone...and i had to give a urine sample...which i couldnt. so i was totally stressed out again...had to drive to my primary cares office to go get my refills. now i have to go back to the pain clinic sometime in the next 2 week to do the urine test before my appointment.

they just dont understand at all how taxing rsd is on our systems.
you are in my prayers catra...that everything comes together for your care to improve, and you to get the right help you need and deserve!
bless your heart!
Lori

Oh Lori...you are in my prayers too. While I can understand that doctors need to be 'careful' with pain medications and all that, it does not excuse the lack of professionalism and compassion. And when they take on new patients then they should make sure that those patients are aware ahead of time if they have a policy like not giving meds on the first visit...especially a pain doc whose job it is to help you manage pain. That still blows my mind. Good luck to you. :hug:

I can really understand where you're coming from. I finally found a really good neurologist who has experience with RSD, and he takes time with me to understand where I'm at and how I'm feeling. It is a huge relief to know that when I see the Dr. now that I won't be treated like a $ or a pill seeker.

I hope you have some similar luck soon, being new to this whole disorder really adds to my disgust with the laws of this nation and the medical community.

I'm happy to hear that you have had some success. I guess what makes it all more frustrating for me is that I lucked into a good doc in the beginning and was doing really well...until he stopped seeing patients and I wound up with an idiot who messed me up and made things worse. Ever since December it's been one bad situation after another...probably because it's the idiots that are doing all the referring. But I am really optimistic about the new primary care doc and the track she has me on. I really think things will get better...I just appreciate having a place to vent and people who can help lift my spirits and give me advice so that I can get through the frustrating moments without exploding.

I got a call from my new doc around 8pm tonight...the results from the EMG were normal so she thinks that at this point I should go to Mayo Clinic. I think that's probably the right move. I know it may take a while to get in, but I think in the end it will be the fastest way to figure out WHAT is going on with me right now. The longer this goes on, the more I am thinking it is CRPS spread (which has always been my big fear). But I can't know that until we rule out other possibilities and at Mayo I should be able to get all the tests run and if it's something else then they will find it. At least that's my hope.

Don't worry Mike, still gonna follow up on Rush ASAP. I'm going to see the doc in person soon and we're going to talk through that as well as what else I can do in the mean time while I wait for the appointment at Mayo. I don't know if there is much that I can do in the mean time but hopefully I can get in to see one of the docs at Rush.

Dear Catra -

I'm not necessarily concerned with what you think I am. If an EEG or EMG/NCS were ABNORMAL I would have no problem with you going to the Mayo Clinic. But for an undifferentiated pain condition? That's another story. And this is something I have experienced up close and personally, and came as real shock, having grown up in the bosom of that institution.

But that said, we both agree that it's important that you begin receiving treatment for the underlying physical malady you do have, which I assure you, as an out of town pain patient, you would not obtain from the Mayo Clinic. Ask around, their exhaulted Dept. of Neurology is NOT considered to be in the forefront when it comes to pain medicine, despite the fact that it has one premiere name in particular on the marquee.

So, do the follow up with Rush, and see a real CRPS specialist there. In fact, I was surprised to be advised on Wednesday afternoon (by someone whose judgment in the field I regard as unquestionable) that you could even get an even shake if you came to the R.I.C as a paying customer, rather than a workers compensation case, although I still wouldn't bet the farm on it. My contact did, however, speak quite well of Rush.

This, as opposed to the highly regarded specialist in peripheral neurology at the Mayo Clinic who dismissed my with a Dx of pain of unknown origin and suggested that perhaps I return in a year or two because - less than a year unto this disease - at that point I did not have enough classic CRPS symptoms, while at the same time she was putting the finishing touches on a major study on the rate of occurrence of CRPS in the population, one that was was later shredded by other researchers for it's use of an overly restrictive approach in ratifying a diagnosis of CRPS. An opinion validated by an accompanying Commentary in Pain, the leading journal in the field.

Then too, consider that the pain program of the Mayo Clinic writ large is closely allied with the workers compensation industry, and their professionals testify as expert witness regularly as expert witnesses in civil cases on behalf of defendants, where plaintiff's allege that the have received CRPS as a result of an injury of some kind, and you may have a better idea of where their bread is buttered, so to speak. And I've heard a couple of real horror stories as well, one going directly to a pain specialist I saw on a subsequent trip through the Mayo Clinic on a predominantly unrelated issue: and I would still trust my life with them in so many areas. But again, don't rely simply on my vague assertions when it comes to pain consultations at the Mayo Clinic, if you want, put up a polling thread on people's experience, here and/or in the Chronic Pain forum, and check it out.

And frankly, my big concern with you going to Rochester is that there would be so much equivocal diagnostic opinion in your file that it could not only delay treatment, but cause others to have doubts about taking you on in the first place. To say nothing of subsequently qualifying for disability. As it is, all you've got against you is one specialist at Northwestern who ruled out CRPS without even looking at your toenails!

Mike