No news, good news, and still waiting
 

So...I know I've been MIA lately (at least as far as updating what is going on with ME)...but I've been busy getting lots of tests and seeing a whole bunch of doctors to try and figure out what exactly is wrong with my (besides the CRPS in my left ankle). The more I go through the more I think it is mostly likely a spread of the CRPS, but we are continuing on the path to rule out any other possibilities.

In the past week and a half, I have had an echocardiogram, ultrasound (gall bladder, liver, and pancreas), chest xray and 21 blood tests...plus I am going for an EGD next Monday. I have also been to see my primary care doctor, an ifectious disease doctor, and 2 independant medical evaluation doctors (pain specialist and orthapedic). And after all that...what do I have to show for all my efforts...results from the eco and nothing else (well...another thing too but not health related).

The ecocardiogram shows that I have a mild heart condition called mitral valve prolapse...which may or may not be causing some of my symptoms like the increased heart rate, chest pains, dizziness, nausea, night sweats, trouble sleeping, and migraines. But we can't write off these symptoms just to the mvp because most people with mvp have no symptoms at all. I mean...it's good to know I have this and that it might explain some of the symptoms...but it's not the main cause of my problems right now.

I won't get any of the other test results back until Thursday at the earliest. I called today to see if the infectious disease doc got back the bloodwork, ultra sound, and chest xray results and I was told they hadn't and the doc wouldn't be in until Thursday and that they would call me and I shouldn't call them. Okay...but the doctor told me to call in a week if I didn't hear from her because she's not always good about calling patients if things come back normal. Whatever...not a big deal...but sort of an odd response from the person on the phone. I'm still optimistic though because they didn't not call because things were normal, they didn't call because they don't have the results back yet. I really hope they find something in the tests that can explain what is happening to me. I'm waiting to follow up with my regular doc until after I get these results so we can discuss what the next step is from here.

Last Thursday I went to two idependant medical evaluations for work comp. They stopped paying me last month for absolutely no reason and wanted to get a second opinion on my condition and my ability to work. First one was an orthapedic...good guy but a total waste of time. He was literally there to just confirm that the problem isn't orthapedic...again...for the third or fourth time. Umm...I know work comp doesn't LIKE the CRPS diagnosis but sending me to orthapedic doctors again and again is not going to change this.

Second IME doc was a pain specialist. Spent a lot of time with him and he seemed really good too. He thinks I should be in a hospital and actually didn't really want me to leave until he made some phone calls...but as an independant medical evaluation he's not there to provide medical treatment to me, just to report on my condition to work comp. But when he came back after making some calls he said that he is going to try to see if there is something more he can do for me. I'm not holding my breath...but at this point any help or opinions from another doctor would be VERY welcome.

So last night (this is the good news, btw) I got the word that I am be sent a check for all my outstanding TTD pay (for the time they had it shut off for..again...no reason) and they will continue to pay me while I am off work (like they should). Woo hoo! Nothing worse than going through all this pain and suffering and having to worry about your bank account slowly disappearing into nothingness and how you are supposed to pay all these bills with no money.

Hope I have something positive about my health to report soon (even if the only thing positive is knowing what it is and starting treatment)...but for now I will have to just keep my spirits up with the knowledge that at least I got some good news on the financial end.

Hi! Very glad to hear about you getting the cash, it had to have come as welcome relief. And I've been wondering how you've been doing. At this point, I'm thrilled that the echocardiogram came back only with mitral valve prolapse! :trampoline:

That said, are you still getting headaches and hallucinations? If so, I'm curious as the whether the infectious disease specialist discussed doing a lumbar tap to check for bacterial meningitis, where that appears to be part of the standard drill. See, generally, A case of spontaneous methicillin-resistant Staphylococcus aureus meningitis in a health care worker, Dylewski J and Martel G, Can J Infect Dis Med Microbiol. 2004 Nov;15(6):336-8, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...JIDMM15336.pdf AND Staphylococcus aureus meningitis: 26 years' experience at Vancouver General Hospital, Roberts FJ, Smith JA, Wagner KR, Can Med Assoc J. 1983 Jun 15;128(12):1418-20, FULL ONLINE TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...01393-0099.pdf:

Abstract
The records of all patients with Staphylococcus aureus meningitis admitted to Vancouver General Hospital between 1956 and 1981 were reviewed. All the patients had clinical and laboratory features of meningitis, and in all cases S. aureus was isolated from the cerebrospinal fluid. S. aureus was responsible for 21 (3%) of the 710 cases of acute bacterial meningitis. Therapy with cloxacillin or methicillin, or both, with or without other agents, was successful in 14 of the 21 patients. Three of the 14 patients without ventricular shunts died, 2 with fulminating septicemia and 1 with a postoperative brain abscess treated with cloxacillin. Following shunt removal and antibiotic therapy all seven patients with ventricular shunts survived the infection. Shunt removal may therefore be essential in appropriate cases.

PMID: 6850467 [PubMed - indexed for MEDLINE] PMCID: PMC187580

http://www.ncbi.nlm.nih.gov/pubmed/6850467

Please note that these are just a couple of the 221 articles - 38 of them allegedly free - that came up when I ran a PubMed search under "meningitis staphylococcus aureus cerebrospinal fluid." And as Dylewski and Martel begin by observing:

Staphylococcus aureus has infrequently been described as a cause of meningitis (1,2). The three clinical situations that predispose to the development of S aureus meningitis are neurosurgical intervention, contiguous infection and S aureus bacteremia (3-8). Until recently, most cases have been caused by methicillin-susceptible S aureus strains. There are now an increasing number of reports (3,4) of severe infections attributedto methicillin-resistant strains of S aureus (MRSA). We report a case of MRSA meningitis in a previously healthy nurse who was not bacteremic at the time of presentation and had not undergone neurosurgery. [Emphasis added.]

Notes
1. Hussein AS, Shafran SD. Acute bacterial meningitis in adults. A 12-year review. Medicine 2000;79:360-8.

2. Durand ML, Calderwood SB, Weber DJ, et al, Acute bacterial meningitis in adults: A review of 493 episodes. N Engl J Med
1993;328:21-8, FULL ONLINE TEXT @ http://www.nejm.org/doi/full/10.1056...4#t=articleTop

3. Chang WN, Lu CH, Wu JJ, et al. Staphylococcus aureus meningitis in adults: A clinical comparison of infections caused by methicillinresistant and methicillin-sensitive strains. Infection 2001;29:245-50.

4. Lu CH, Chang WN. Adults with meningitis caused by oxacillinresistant Staphylococcus aureus. Clin Infect Dis 2000;31:723-7.

(Up considerably from the 3% of cases of acute bacterial meningitis Roberts et al found in 26 years of their hospital's records, between between 1956 and 1981.)

Both articles should be an easy read. I would urge you to go through them for point of commonality and divergence from your situation. as well as to note how little the protocol for diagnosing bacterial meningitis has changed in all these years. That said, physicians are justifiably reluctant to order a lumbar puncture unless they suspect meningitis in the first place. Correspondence: Nosocomial [acquired or occurring in a hospital] Bacterial Meningitis, N Engl J Med 2010; 362:1346-1348, April 8, 2010, FULL ONLINE TEXT @ http://www.nejm.org/doi/full/10.1056/NEJMc1001713 (And having reviewed, Durand ML, Calderwood SB, Weber DJ, et al, it might not hurt to take a look at it as well.)

And one final point. In responding to your Doctor runaround thread http://neurotalk.psychcentral.com/sh...d.php?p=764470 I may well have been wrong to have discounted your reports of itching, where all of these fine people have had personal experiences to the contrary: RSD & Itching? http://neurotalk.psychcentral.com/thread149239.html (Started April 28, 2011.) :o

Best of luck on Thursday!

Mike

I feel so bad that you have not found out much more than before. It must be very difficult for you with having so many things going on. My heart goes out to you.

I would like to say, my doctors years ago thought I had MVP. They did all kinds of testing and found my heart to be ok. My symptoms were headaches, dizziness, sweating, room spins, faintness, weakness, claminess and maybe a few more that I cannot remember. I started to track when this happened and it mostly happened at my monthly menstrual cycle. When my doctor and I discussed it again she came to the conclusion that it was hypoglycemic episodes and told me I must eat something every couple of hours and to keep hard candy in my purse just in case. It has helped. It does occasionally still happen if I am not doing what I am supposed to...just thought I might share that. Not saying that is what you have, but just something to think about!!

keep us updated!! thinking of you!

Thanks both of you. I know it's not much...but it's something I guess. Mostly waiting on the other test results because even with MVP it's not a certainty that these symptoms are coming from that since so many people with it don't have any symptoms at all. I've read (yeah...spent a lot of time today reading up on it) that it was once WAY over diagnosed...but since it was the eco that caught it I think it's fairly ceratin that I have it...just not so certain if it means anything much. But always good to know something.

Yes...still having the hallucinations and headaches. Doesn't seem like any of my symptoms ever go away...they either get worse or stay the same. I have asked several doctors at this point about the meningitis and it's like talking to a wall...all except the new primary doc who expected the ID doc to test for it. They all say the chances are so slim...but I don't get it. The chances seem just as good for that as for anything else given what we know and what my symptoms are. I said even if the chances are slim, shouldn't we at least make sure it's NOT meningitis? I don't know if it's because they think I am exaggerating, or what, but they don't seem to take the idea seriously. I know I don't have a stiff neck like I did when I had a cervical strain...but I still have pain in my neck when I move my head. I guess I can't MAKE them do the test, but when I follow up with my primary again (after I get the rest of the test results) I'm going to bring it up again and really push for her to order the work up (even more so than I have been I guess). This is where I really wish the BF was with me at these appointments because he's more forceful/intimidating than me. Might have something to do with the fact that he is 6ft 6in tall and I am a measly 5ft tall and 105 lbs. But my mother is totally useless when it comes to being helpful in these appointments.

But fingers are crossed that these test results we are waiting for show SOMETHING and we can start treatment soon.