So...the bad news keeps on rolling in. I feel like I am going through the same struggle I went through getting the CRPS diagnosis...except this time it is my whole body that is shutting down on me. And believe me...if I didn't fully recognize how lucky I was to get that diagnosis for CRPS within 6 months of the injury...I do now. Not that it has been 6 months with this new stuff...only 2...but when EVERYTHING starts to go so bad with NO explanations offered you start to go completely nuts.

As you have probably assumed by my posting...I did not get admitted to the hospital. The doctor said that he does not think there is any possibility that my problems are neurological. His brilliant explanation for everything: stress. Now...I have no doubts that this is a very brilliant doctor who has done great work in the field of Parkinsons (which he said is his specialty after I started talking about the pain and he asked why I was there to see HIM)...but I have to be skeptical when someone tells me that my pain, these physical manifestations of my condition on my body (redness, puffyness, etc), the hallucinations, vision problems, etc are all just stress. Some of the later ones...maybe. I mean...over a month into this and my hair starts falling out...that could very well be stress related. But at the time this all started I don't remember BEING in any real stress. Any stress I have had seems to come from the fact that we're going on months with me being in this condition without anything improving or getting any closer to a diagnosis. Going months with zero relief of treatment for my PAIN. Yes...those things are incredibly frustrating and stressful.

The good news is (and it took me a long time to really find any) that the doctor didn't say that my pain wasn't real, that these things weren't happening, he just said that they were caused by stress. I don't buy it...but am willing to check it out on the off chance he is correct. But it seems like a total cop out to me. Anyway...also good news is that IF it is not neurological then that means that my brain is okay and that my nervous system is okay, and the chances are very good that I WILL get better. Of course...I don't know how I am supposed to GET better without any diagnosis...

And...when the doctor told me what he thought at the end of the appointment...I totally broke down into tears. I hate crying in front of people...I'm not that sort of person. But I just couldn't hold it back. I mean, if the doc can't admit me because he doesn't think it's neurological then that's that (and I would never want a doctor to do anything they weren't comfortable with)...my frustration just comes from the complete lack of movement towards getting any sort of answer. And in the back of my head now is that stupid article about how it took this woman 10 years to get a diagnosis. When you're only 27...10 years is just an amount of time you cannot really grasp...though I guess it's a long time no matter who you are and what age you are. I know I can't dwell on that possibility...but before I read the stupid thing my 'worst case scenario' in my head was maybe 6 months. I don't know how all of you did it who had to wait years for the CRPS diagnosis...though I guess I am beginning to understand why you had to wait.

The doc did make a comment about the CRPS diagnosis in my left ankle. He said that he thought it was incorrect because there wasn't massive swelling and it wasn't grossly discolored. I hate to say it...but that has to be the one thing that makes me doubt this doctor's assessment about my other pain being stress related. I know stress can make my ankle flare up worse (which may explain why my ankle is almost constantly at a level 9/10 these days even with the limited walking). But I also know that not every possible symptom of CRPS has to be present for that to be what it is. And since it wasn't the reason for my visit to this neurologist I didn't feel the need to argue with him (really wasn't emotionally equipt for it anyway) but I wanted to sort of yell at him and ask what he thought it WAS if it wasn't CRPS. I'm all for there being differing opinions...but before you start spouting off to me about what you think it isn't when it's not something you deal with...maybe you should have some idea of what it IS if it's not that.

But stress...stress...really? I find myself on the one hand not wanting to dismiss something if it really could be the reason for my pain...but on the other hand I want to run away screaming. I guess he couldn't just say that everything was in my head because the physical manifestations of whatever this is are real and can be observed...but saying that it's stress seems barely one step better than that. And his only reason for saying it is because so far no one has figured out what it is. And while I understand that on the one hand...I feel like there have been so few test done, absolutely no effort by anyone to actually address the pain, and it's just too early to give up on getting a real diagnosis for what's wrong. There is simply just no way that they have ruled out every other possibility. But then...maybe this is a possibility that needs to get ruled out just like all the others...but how do you rule it out if they believe stress CAN cause all this stuff. There's no test they can run to just tell you how much stress you have and prove that it is causing you to have physical manifestations of that stress, is there? So, if that's the case, then are we just giving up on looking for the 'real' cause of these problems if we pursue the 'stress' theory?

I know that I had a lot of people who could not explain my pain when I hurt my ankle. It could not be explained by xrays or MRIs. It could not be fixed with cortisone shots or immobilization. Everyone just dismissed me telling them about the 'coldness' that I was getting as just some circulation problem probably due to me not using the leg as much. Narcotic pain meds didn't help the pain. I'm sure at that point a lot of people thought that the pain was just 'in my head'...until I got to a doctor who said no, it's not...and he diagnosed the CRPS. I had never head of CRPS before...but when I went online to check it out it was like the A Ha moment. Suddenly all these things that made no sense to me actually made sense. It's not like it is something I was happy to have...but once I knew what it was I was able to move forward with treatment and deal with it emotionally. I knew what I needed to do to get my life back, I finally had medications that helped the pain, and while it wasn't ideal or perfect...it was SOMETHING.

So now flash forward to today, dealing with this new stuff. I can't help but feel like I just haven't gotten to the right doctor yet. I'm not ready to throw in the towel yet and give up on a medical reason for these things that are happening to me (other than 'stress')...it's too early for that. My boyfriend, why has been absolutely wonderful in everything, thinks the doctor may be on to something and that maybe stress IS what is causing all this because the brain's a powerful thing blah, blah, blah. And here I am in the middle feeling torn between what I feel (which is that I don't buy it) and what others have to say...which at this point is the only thing we have to go on. If my hair weren't falling out I would probably be pulling it out by now.

So after all this, we ask the neurologist what the next step is...and he say that we should follow up with my local neurologist once he gets his report...in about 2 weeks. 2 weeks...meanwhile I just sit here in pain, suffering, and try to relax. I had to wait 3 weeks for this appointment and have to wait 2 weeks after the appointment before I can do anything...this may be the process that one has to go through but I'm here to say that it SUCKS! I mean...the whole point of all of this going to a university center was to get admitted to the hospital because they don't know what's wrong with me...only to come to find that they can't admit me unless they know what's wrong with me. WTF is that? Does that make any sense to anyone? Can anyone explain it to me in any way better than they just dont want the hospitals filled up with fakers? I mean...every doctor SEES that there is something seriously wrong with me...all three of the specialists that I have seen have said that I need to be admitted to the hospital to have a team of specialists try to figure out what is wrong with me...so why isn't that happening?

So where do I go from here? Well...I am going to be making a lot of phone calls next week to see my primary care doctor, my PM doctor, and my neurologist. I'm not sure if it's worth seeing the neurologist until he gets the report from the other doctor or not...but the simple fact that I have not been admitted should serve as sufficient proof that I am not getting the treatment that he himself said I needed. So, do I need to go to Mayo, or is that going to be the same story there? Are they not going to be able to admit me until there is a diagnosis either? Do I need to be admitted to a local hospital first so they can run some more tests to try to diagnose the problem? If that's the way things work, then why did they waste my time with sending me to this guy if he wasn't going to be able to do anything for me? On the off chance that he say something that you guys didn't...with nothing but the most basic tests run? My frustrations with the entire process keep building and building and if this is all 'stess' related then I guess I'm lucky I'm not in a coma or dead. At what point is my elevated HR going to actually end up being a stroke or a heart attack? Will it concern someone then? Will someone finally CARE about that symptom when that happens? How about my low grade fevers even with massive amount of Tylenol being taken every day? At what point is someone going to get concerned enough about that to do anything? And speaking of Tylenol...how long are these so called specialist going to let me take 3000mg of Tylenol a day? Until my liver shuts down? I could go on forever with this list of questions...

I'm a fighter...a stubborn, determined fighter...but I feel the fight slipping away from me. My emotional breakdown today...it scares me. I know we're all entitled to lose it from time to time...but as clear headed and logical as I try to stay...I feel it slipping away. I just don't know what to do from here. I have a plan and everything...but I'm starting to feel the fight go out of me and that scares me as much as anything because I know I need the fight if I'm going to get through this. Everything that I went through before with my ankle...I never lost the fight...and that was a very stressful situation dealing with just some awful people at work after the work injury and work comp along with unexplained excruciating pain. But this...the only stress comes from the pain/symptoms and the process. The pain/symptoms are worse because they are everywhere and affect every thing and they are a lot more scary (though last time I would not have thought that possible). But they didn't start out that way...they have gotten much worse over time. The onset of the symptoms was during a much less stressful time (which is one of the reasons I don't buy the stress theory). So...while everything has gotten worse...I would say that my stress has increased as things have gotten worse...not that things have gotten worse as I have gotten more stressed. Does that make sense?

Anyway...I could probably beat this to death and write a fricking book about it all...but I will try to spare you at least that much. I mostly just needed to vent out all of these thoughts that are bouncing in my head. Talk it out, so to speak. Thanks for listening...this is the one place where I really feel like people can understand what I am going through (even if this new stuff isn't CRPS). The process seems to be very similar...and while I keep hoping for another quick diagnosis...well...not gonna get into that again. Just know that I am truly grateful for a place filled with people who are understanding and who get it. Can't tell you how much that is worth (though...you probably already know). Thank you.