I had a follow-up with the neurologist today who I have been seeing since the complications after my LSB on January 31st. It was a frustrating visit on many levels.

It was a nice long good talk that ended up giving me diddly. But at least the doc assured me that everything "useful" that could be done has been done. He doesn't think that admitting me to a local hospital will give me the answers that I need...he said I really need one of the big city centers and they made me an appointment for the earliest possible time that they could get me in (3 weeks away). He said running tests in the mean time would be worthless because the Northwestern will want to run their own tests (they apparently don't trust other test results). He was most concerned with the high heart rate and told me to keep track of that for the next few weeks and if it is consistently high then I may need to be admitted to a local hospital...but that would just be reacting to a symptom and trying to get it under control rather than giving me the diagnosis and treating the problem that is causing the problem.

Some of my bloodwork that the rheumatologist ran came back abnormal...so I made a follow up appointment with her next Wednesday (yet another week of waiting but apparently I have nothing else going on so...). The neurologist really thinks that it is probably some sort of connective tissue disorder. But he also thinks that the doc at Northwestern will probably admit me because my case is so complicated with so many things going on. I hope so...but I really don't know what's going to happen. The neurologist feels pretty confident that they have done everything they possible can at this point for me. So I just have to wait. And now I feel like I have done everything I can to get this process sped up. So I'll see the rheumatologist next week and see what she thinks about the blood work and what the neurologist had to say.

Also spoke to the neurologist about the amount of tylenol I have been taking (3000mg a day). He said that he really doesn't want to play with my meds because he seems to think that my symptoms will just sky rocket if he takes me off or lowers the dose of anything. Despite my low grade fevers he still doesn't think that I have any kind of infection. He did seem really shocked that I was taking Tramadol (ultram), tylenol, and meloxicam (mobic) all at the same time because he said they all do essentially the same thing. I explained that these (except for the tylenol) were what I was on for the CRPS in my left ankle. He still seemed to think that I shouldn't be on Ultram and Mobic at the same time...but then he's not a pain specialist so I don't put a lot of stock in that. He has his specialty and it is not related to CRPS (he was the one who told me it doesn't spread).

So I guess it's just sit and wait in pain while my symptoms all keep getting worse. It's very scary but the neurologist really seems very convinced that there is nothing left to do except follow up with the rheumatologist and wait until April 1st to see what the neurologist at Northwestern says/does. It's very frustrating that there's no way to speed up this process. I guess I just get to sit at home in pain and hope these symptoms don't kill me in the mean time or cause any permanent damage.

Forgive me for butting in - with absolutely no medical training of my own - but I see no reason to have any confidence in your neurologist: NO ONE should leave a patient with unexplained and severe neurological symptoms walking around with an untreated infection for four months!!! Keeping the fever in check with Tylenol - ignoring the risks of that medication - may just be suppressing the body's immune response to an infection that could be causing you harm on its own. During your chat, just what did the good doctor have to say about the wisdom of you walking around with an undiagnosed infection for FOUR MONTHS? And what about a simple blood blood test (the metabolic panel) to check your liver functions? (Just because they would have to be repeated - at minimal cost - in three weeks, doesn't mean that you shouldn't be advised of the status of your liver functioning sooner rather than later, where you've been on a heady dose of Tylenol for what's really quite a long time.)

I don't know what kind of a hold the neurologist has over your other docs, but what happened to putting in an urgent call to your new PM doc? Ditto the rheumatologist?

Northwestern can't have the only competent neurology facilities in Chicago. (All I can think of is that your doctor(s) is/are committed to a series undisclosed professional referral relationships.) Forgive me if I don't come across as a source of calm emotional support, but I find your medical care deeply troubling. You deserve better.

Mike

I did call the PM and the rheumatologist and they sent their recommendations and my primary care doc called the neurologist and spoke to him...but the neurologist just said that this is how long it's going to take. I don't know anything about bloodwork...but the neurologist said that the stuff the rheumatologist ran didn't show anything to indicate that the tylenol was having a bad effect on me. And he said he really doesn't think that I have an infection...that it is normal to have the low grade fevers with the tylenol...

The neurologist said that I wouldn't be able to get into Loyola, Rush, or Mayo any faster and he knows this because they've been trying to send other patients to those places and it's taking longer. So that's apparently all there is to that...

I don't mind your bluntness...it only reflects the way I feel inside and the way my family and friends feel. But if the neurologist really thinks this is the right path then I have to trust my doctor. I told him all the things you are telling me so that there was nothing missed (and I was pretty forceful for me) but he really has me convinced that this is the right path...even if I don't like it.

When I see the rheumatologist next week I will see how she reacts and what she thinks. My PC doc seems to think that this is the right path and that waiting 3 weeks is normal. I know I am not the only one with problems and I have to wait my turn...but I really want things to move FASTER. I may not be getting the care I want or think I deserve...but it may be the best I can get at this point...

Catra -

I understand and appreciate that you have done (and are doing) all you can do. Clearly, your neurologist doesn't think that there is anything seriously wrong with you: I can't imagine that you would not have been admitted through the ER by now if that was the case. And the fact that your new PM is in apparent agreement with this course of action makes both if us more comfortable!

But just out of curiosity, I wonder if there is a similar waiting list at the Cleveland Clinic? (Probably so.)

But the one thing I still don't get is the mild fever where, if anything, acetaminophen (Tylenol) has significant if limited antipyretic (fever reducing) effects in both children and adults, as I had thought. See, e.g., Acetaminophen has limited antipyretic activity in critically ill patients, Greenberg RS, Chen H, Hasday JD, J Crit Care 2010 Jun;25(2):363.e1-7. Epub 2009 Sep 24:

Division of Pulmonary and Critical Care Medicine, Department of Medicine, University of Maryland School of Medicine, Baltimore VA Medical Center, Baltimore, MD 21201, USA.

Abstract
PURPOSE: Fever occurs commonly in the critically ill patients and may adversely affect outcome. Acetaminophen is one of the most commonly used antipyretic agents in the intensive care unit; however, there is little evidence that it is effective in this population. The objective of this study was to analyze the antipyretic activity of acetaminophen in critically ill patients.

MATERIALS AND METHODS: We performed a retrospective study of medical intensive care unit and surgical intensive care unit patients with systemic inflammatory response syndrome and compared the resolution of fever in the presence and absence of acetaminophen treatment by comparing the absolute reduction in body temperature and the rate of cooling over comparable time frames in fevers that were untreated and those treated with acetaminophen.

RESULTS: We analyzed 166 febrile episodes (body temperature, >38 degrees C) in 59 patients with systemic inflammatory response syndrome without cancer, neurologic disease, or liver disease. Acetaminophen was administered for 88 of 166 fevers. Febrile episodes in which other antipyretic drugs or external cooling were administered were excluded. The response to acetaminophen was variable, but the absolute temperature reduction was slightly higher (mean, 0.86 versus 0.56 degrees C; P = .0362), and the cooling rate was slightly more rapid (mean, 0.20 versus 0.13 degrees C per hour; P = .0152) in acetaminophen-treated versus untreated fevers. There were no obvious differences between the most and least responsive patients.

CONCLUSIONS: We conclude that acetaminophen has significant albeit modest antipyretic activity in critically ill patients.

PMID: 19781895 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19781895

AND

Fever and Antipyretic Use in Children, The Section on Clinical Pharmacology and Therapeutics; Committee on Drugs, Pediatrics 2011 Mar;127(3):580-587. Epub 2011 Feb 28:

Abstract
Fever in a child is one of the most common clinical symptoms managed by pediatricians and other health care providers and a frequent cause of parental concern. Many parents administer antipyretics even when there is minimal or no fever, because they are concerned that the child must maintain a "normal" temperature. Fever, however, is not the primary illness but is a physiologic mechanism that has beneficial effects in fighting infection. There is no evidence that fever itself worsens the course of an illness or that it causes long-term neurologic complications. Thus, the primary goal of treating the febrile child should be to improve the child's overall comfort rather than focus on the normalization of body temperature. When counseling the parents or caregivers of a febrile child, the general well-being of the child, the importance of monitoring activity, observing for signs of serious illness, encouraging appropriate fluid intake, and the safe storage of antipyretics should be emphasized. Current evidence suggests that there is no substantial difference in the safety and effectiveness of acetaminophen and ibuprofen in the care of a generally healthy child with fever. There is evidence that combining these 2 products is more effective than the use of a single agent alone; however, there are concerns that combined treatment may be more complicated and contribute to the unsafe use of these drugs. Pediatricians should also promote patient safety by advocating for simplified formulations, dosing instructions, and dosing devices.

PMID: 21357332 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/21357332

And there are scores if not hundreds of articles just like this, most of them comparing the relative efficacy of Tylenol, Advil, or any number of combinations of the two in reducing fever.

As such, I'm not sure where your neuro was coming from with "...that it is normal to have the low grade fevers with the tylenol..."

be good,
Mike

Thanks for that info...I really thought that was an odd comment from the neuro (right up there with, "RSD doesn't spread"). I'm just trying to look forward to seeing the neurologist at Northwestern at this point so I can finally (hopefully) get some decent care and get this thing figured out. Just 2.5 weeks now...1 week until I see the rheumatologist...