Here's hoping that you are in the hospital now and they are trying to figure out what's going on !

I wish. Just heard from the neurologist today and they made me an appointment for April 1st...3 weeks I have to wait to see the doc at Northwestern. I'm assuming that's because that doctor has admitting privledges...but 3 weeks is just unacceptable with the things that are happening to me. So Monday I am calling the neuprologist's office and making an appointment. If there is nothing they can do about the time of the appointment then maybe we can do some tests in the mean time or something.

3 more weeks for whatever this is to cause more damage...I am being totally serious when I say that I have never been this scared before. Trying to stay positive...but it just hurts so darn much...

Hi. I agree it's nuts that you have yet to be seen.

Does the PM doc know how long this is taking? I would leave an URGENT message for her on Monday (any sooner and it could go to a doctor on call) and let her know (1) what's going on and (2) how scared you are. That may move things along.

You haven't mentioned it, so I'm assuming that you haven't been running a fever through all of this. Is that correct?

Mike

Low grade fevers. I've been taking 1000mg of tylenol 3 times a day with the Tramadol...so I think that's been keeping the fevers low around 99 ish. Docs don't seem all that concerned with it so I forget it sometimes with all the other stuff that's going on.

Forgive me, I don't mean to sound overly concerned, but I find it inexcusable that your neurologist is allowing you to wait around for another three weeks with an active infection, where your fever is being contained only by relatively large amounts of Tylenol (acetaminophen) over a comparatively long period of time, essentially a month.

And to put just the Tylenol into perspective, the maximum daily adult dose that's allowed is just one pill above what you are taking: 4,000 mg. That, and "[w]ithout intervention, about half the people who swallowed a single dose of 12 to 15 grams could die." "Poisonings From a Popular Pain Reliever Are Rising," Deborah Franklin, The New York Times, November 29, 2005, http://www.nytimes.com/2005/11/29/he...cations&st=cse By comparison were I to quadrouple my daily dose of Oxycontin, I strongly doubt that I would be facing a 50% mortality risk.

A month on 3,000 mg. of acetaminophen/day is not to be taken lightly. But being asked to hang out there with an active infection for which you are not being offered any treatment (even if there was a chance that might first require a culture based on a spinal tap) is worse.

Please call the PM doc and let her know what's going on.

Mike

Thanks for your concern and I definitely intend to make a number of calls to various docs on Monday (including the PM). It IS ridiculous that I have to wait that long...and I'm making an appointment with the neurologist too so that I can talk this all out with him face to face because my condition has gotten worse since the last time HE saw me and maybe he just doesn't realize (though one would think the recommendation from 3 doctors would be enough to make him worry).

I've been terribly nervous about the Tylenol...but that's what the original pain doctor told me to take to make the Tramadol more effective. Not that I think much of him in any case...but I've been taking that much since the middle of December. I'll go over that with the doc when I see him.

But all this waiting is just killing me (maybe literally). I just can't imagine what sort of shape I will be in 3 weeks from now...

If you can't get in to a dr soon, see if you can get a letter ( fax/email/letter) with some basic information and your dx from that dr that had the freak out , and go to urgent care or ER.

This is crazy, if she thought you should be in a hospital right away, and now you are having to wait so long for care.

I thought most dr offices leave a slot open for immediate care pts.

does the dr office that gave you the appt know it is for an urgent condition?
some places have a waiting list for when there is cancellations and will call to see if you are able to come in?? You can ask to be on that call list also.

But I really wouldn't wait at all- especially if it is getting worse.

That, and when was the last time someone ordered a complete metabolic panel (an easy/no-brainer blood test) to check your liver functions?

That doesn't ring a bell...there are so many tests that the PM doc and the rheumatologist asked me if the neurologist had done and all I could say was no. The rheumatologist is running some blood work but that is just to screen for inflammation conditions and she expects them all to come back normal.

I just feel like someone is dropping the ball here. I've been to the ER twice through this thing and both times they've just said I have to wait until I can see another doc (they usually give me something to try to help with the pain and something to bring m heart rate down and then it's time to go home). The neurologist's office was able to get me in the day after my MRI so I would think if I call on Monday I should be able to get an appointment for Tuesday or Wednesday. In the mean time I can have the PM doc's office send her records and recommendations to the neurologist and call my family doc to see if he can get involved too.

I figure that even if I CAN'T get into the hospital sooner then at least maybe they could run some more tests in the mean time so I would feel like I was doing something to try to figure out what is wrong with me.

I am making a list of all the things you guys are saying btw...I find that I have to go in with a list of questions/things to discuss with the doctor otherwise I forget to ask things or get too startled by something. And lately I take someone with me to help be my advocate too. There's just too much going on with me...plus...my thinking isn't always so clear.

Thanks again...I am hoping to get this all resolved soon. CRPS in my left ankle is bad enough...I don't need all this other nonsense...

I agree with fmichael, see if you can get the pm dr to put her recommendation that you stay at the hospital in writing and that way if your neurologist is still not doing much you can maybe bypass him. I can't believe you also have had a fever this whole time and you are still in limbo. I'm so sorry that you are needlessly suffering. I know you are in Illinois so if you need a good dr that will actually take care of you then I would recommend Rush University's pain management sector (312-942-6631). They can usually get you in within a week and will probably admit you right away. They have the best treatments in the whole state (including ketamine). Please work really hard on making some progress tomorrow and fight like your life depends on it, as that might actually be the case. It makes me sick to hear how you are being treated (or lack of care in your case). Time is of the essence with CRPS and especially with all your other alarming symptoms. My heart goes out to you and you will be in my prayers and thoughts. Also, if your not in chi town or Rush is to far for you to travel to please let me know because I have a couple other Dr's that I can suggest that are in the suburbs of Chicago.
Gentle hugs xoxoxo
Sarah