Dr. Friedman...

I'm heading to L.A. on Wednesday morning to see Dr. Friedman- the periodic Cushing's specialist. Everyday I change my mind about my own diagnosis. Depending on the moment, I'm sure that I have Cushing's, or that my endometriosis is the cause of all of this, or that I in fact have Celiac Disease causing the drama, or that I'm actually fine and just need to get used to my new "body". Each moment changes the outlook. I just got back from the gym- a 90 minute intense workout with Ben where we both kicked eachother's asses, and it's hard to believe that I've been so sick. But then I stop and realize how sad it is that I can't lift my own body weight, or how that stabbing pain after my workout under my rib cage radiating up to my right shoulder probably isn't all that normal. And then I think about how I felt three weeks ago, and how this always happens. This period right now, the this-is-not-so-bad-I-can-deal-with-this period, is what makes me stop seeing doctors again and go back to just dealing with what I've got going on. And then, sure enough, a few months later I'm back in the doc's office worse than ever....trying to figure out what's wrong with me. This is the first time that I've actually realized that it might all be related- that it might be one big long problem that just cycles in and out. I'm in a good phase, and I want to forget about the bad phases...but maybe I shouldn't just yet.

I went to see a GI doctor today for the first time, ever. With all of my endometriosis problems, all of the GI symptoms, all of the pain- I've never seen anyone about that piece in particular. Dr. Harris at the Mayo Clinic was really great. She sat with me for an hour going over my whole history, detail by detail. She was very thorough, and it really helped me put everything together. Basically, she thinks that a lot of what I've got going on is caused by the endometriosis. She thinks I have endometriosis implants in my bowel, but she wants to do a colonscopy to make sure there's nothing else that could be a problem. She also is really concerned about celiac disease, which I was surprised about. Because I've been fairly gluten-free for months now, she can't test for it. And she feels that my previous test, after having been gluten-free for over a month, was probably incorrect. I already know that I feel better (not 100%, but better) when I avoid gluten, so I just want to stick with that. But she said if I do actually have celiac disease, it can be really bad to not diagnose it and just keep eating a little gluten here and there because of the damage it can eventually cause. She is having me start eating gluten again- the equivalent of 4 slices of bread EVERY day for 6 weeks, and then I'll have some blood work done to determine if I have the first markings of celiac disease. If the blood work comes back positive, they'll move on to the upper GI scope/biopsy, and they'll do that while they go in for the colonoscopy. Sounds like a good day, eh?

But right now I'm focusing on my trip to L.A. to see Dr. Friedman. I know it says to take pictures to show body changes, etc. But I don't have a whole lot of change other than the 25ish pounds I've gained in the last 4 months out of nowhere. I guess I could take pics from 6 months ago to compare to now, but my symptoms and everything started long before 6 months ago. The weight however wasn't much of a problem back then. That's a recent change. I got all of my medical records from the Mayo Clinic today, so I'll be taking those. And then I'm taking my MRI scan, but they'll have to do repeats in L.A. because my previous MRI was done on a 1.5 Tesla machine, which isn't as strong as they'd like. But if my tumor showed up clear as day on a 1.5, what will it look like on a 3T? And why would they need something stronger if they already can see it? Oh well, I guess a better image can't hurt.

Anyone out there who's seen Dr. F have any tips or anything for my trip? I'm a little nervous about what he's gonna say or how I'm going to explain everything to him. I have no idea what's connected, what could be Cushing's, what to tell him, etc. I have my folder of all of my medical records, and I'm writing down all of my symptoms- but I don't have any grasp on my "cycles" because I haven't done much testing at all yet. I just know of some symptoms that correspond to each other, but not whether they correspond to high cortisol or low cortisol.

Help me out if you can! I appreciate it! :)

surgery?

I went to see the Mayo Clinic GYN yesterday and had a very interesing appointment. Dr. Kho was really nice and very concerned, which is refreshing. She had already talked to the internal medicine doctor about my issues and that was also really great to hear. We went over some of my history and she did an exam, which is always lovely with endometriosis. Then the interesting part: I explained my concerns with the right upper quadrant pain and the shoulder referral pain- and my confusion about what it was linked to. She pretty immediately expressed her opinion that it's endometriosis, and then very quickly went into the idea of having another surgery to check out my diaphragm and remove the endo. The last GYN I saw told me that doing any endo removal up around the diaphragm is way too risky, but Dr. Kho talked for quite a while about her confidence in the Mayo Clinic robotic surgery division, and the oncologist they would have perform this surgery. Apparently he can do everything- some sort of super doctor. He would be the surgeon because of the possibilities of bowel resection, diaphragm involvement, and emergency repairs that could come with all of that. She really seemed to think that having another surgery was a good idea, but left it with me being in charge of deciding "when it's too much to bear" and when we should go in and try again. I'm definitely a little concerned about having another surgery after the last one did nothing but cause more problems...

Another fun fact I learned at this visit is that I have kidney stones, and apparently the internal med doctor missed that when she went over my lab results. What? How do you miss that? I had explained the radiating pain, and they tested for calcium in my urine...and it came back positive apparently. So Dr. Kho said she'd follow up with the internist to make sure I get a call about that and an appointment with a urologist. Fun fun. Why do I have kidney stones? What's WRONG with me?!?!?!

Exciting news: I went to the gym last night! That's right, Ben took me to the gym and acted as my trainer for the day. It was great. He was a really good motivator and also was gentle, so I'm not too down on myself. It was absolutely embarrassing though- I couldn't do assisted pull-ups. Assisted!!! I had a lot of trouble with squats too. I'm just sad about the whole thing. I'm so shaky and weak. But I'm going back tomorrow! :)

Rotating

I'm starting my new position at work tomorrow. It's funny, I have no expectations of it at this point. I'm not too worried about it either, I think it'll be managable which is good. The only thing I'm worried about right now as far as work goes is having to present out my project again next week (Thursday) with some additional pieces that I haven't completed yet. Oh, and the fact that I'm going to be gone a whole lot over the next couple of months. That stresses me out, unfortunately. But also really excited for some of the great things I've got coming up that will be pulling me away from the ol' office. First, we're going to Napa this weekend for a family vacation, Ben in tow! Very excited, should be perfection in my book. We're staying at a vineyard/bed and breakfast! Then I'm going out to L.A. to see the Cushing's specialist April 1st! As much as that's gonna suck, I'll be glad to hear what he has to say. Then it's off to Disneyland for my 26th birthday with my amazing boyfriend in the middle of April. And then in the middle of May we'll head back up to Napa for a wedding at a vineyard :) Good times all around!

Now for the bummer messages. I have an appointment with the GYN at Mayo Clinic tomorrow morning. I'm NOT looking forward to this in the slightest. I can guarantee it will be a frustrating appointment, because I'm not pleased with how I've been feeling, and I have no idea what's causing it. A substantial amount of this discomfort could very easily be blamed on endometriosis. But what could we possibly do about it? I had surgery to try and remove some of the pain, and it made things worse! I went on Lupron to try and remove some of it, and I was a crazy person (and it didn't work as well as I would have liked). I went gluten-free for this damn disease, and nothing. Now I'm on birth control for it and I'm still not feeling lovely. It seems to me that options have been exhausted. At this point, it's a learn to deal or go insane situation. razzle.dazzle.

Second bit of bummer news. I haven't heard from the internal medicine doctor about setting up any follow-up appointments, lab work, or forward movement whatsoever. I did get a voice message from their little voice system telling me that the urine analysis came back perfectly normal. Shocker. So that pain I've been having with urination- eh, no biggie. The tests are normal, I should be good to go. So, square one- it's good to see you again.

And now a little neutral style news: I met with the endocrinologist, Dr. Lalani, who originally diagnosed me with Cushing's and said I needed the tumor to be removed. I asked him why he diagnosed me and what it means that the neurosurgeon I saw said he didn't feel comfortable with THAT particular diagnosis and needed a different doctor to diagnose me (who, if you haven't been following, did not in fact diagnose me...but rather told me there's nothing "endocrine related" wrong with me and that I need to see and internal medicine doctor...who told me I need to see a GYN and a GI doctor...anyone picking up the pattern here?). Dr. Lalani did some interesting word play and underhanded back pedaling, but somehow made me feel a little bit better about my present stagnant situation. He said that because he's such a proactive doctor, he saw some possibilities of Cushing's and decided we should stick with that because Cushing's goes undiagnosed so often. I was impressed. He then said that I've disproved Cushing's a couple of times now, but have also proved it. So we need to continue to test to figure out which hypothesis to stick with. He put it that it's not cyclical Cushing's that I might have, but rather it's Cushing's with cyclical production at this time. He said all Cushing's starts out like this, with cyclical nature. We found mine early, possibly. We will continue to test until it inevitably progresses toward florid (or constant producing) Cushing's. He said that's how it works. And so Dr. Lalani wants to re-test with a 24 hour urine once every 6 months. Doesn't seem very cyclical testing to me. And that's a looooong time to go between tests if my symptoms aren't getting any better. And he said he's also looking for growth of the tumor, so we'll do another MRI every 6 months as well. But I've heard these tumors don't necessarily have to be growing to be totally evil. I like this doctor a lot, but I'm skeptical. Once every 6 months? That's rough. If it's really like he says it is, with progress sure to come, then I guess that's fine. But if it's cyclical and will be this way for a while...I still want it to go away!!! Why not just take the tumor out! I guess the answer to that is that they don't want to go in for brain surgery if I don't need it. Valid concern, I agree. But tough to take at the same time.

So I'm glad to be going to see Dr.Friedman. Expensive though, I'll tell you what! I have to get another MRI or two while I'm out there because my previous one was on a lower resolution machine than he needs it. And it's all out of network. And I have to pay cash for the actual visit with the doc. Ouch. If any cushie's are out there reading this (who used Dr.F, what's that visit like? Should Ben come along and use some of our valuable PTO days? Or will it be fine if I go alone? Is there any time for anything else other than the testing?

I'm back!!!

Wow, I'm a bad blogger. I've been crazy busy lately with work- I presented out my final product for a project I worked on for three months just Friday. It's so good to be done with that (ok, I still have to present it one more time and do a little extra work with it, but I'm pretty much done now). And I went to NYC for a whirlwind trip last weekend. That was phenomenal! Got to see my girls from Stanford and reminisce...loved it. But that's no excuse for the ridiculously long hiatus from blog world. I'm back now, and you get to hear all about it!

I had my follow-up appointment with the endocrinologist a couple of weeks ago- it was not so good, let me tell you. I sat down in his office, knowing that my test results were normal (other than a trace of hemoglobin in my urine, as well as high creatinine and low osmolality) and expecting him to say I'm perfectly fine. I was not pleasantly surprised. He said that it looks like everything is normal, I don't have Cushing's, that "little something" I have in my brain is no big deal, a lot of people have those, and that he thinks the Lupron is what's causing all of my symptoms. I quickly reminded him that I've had these symptoms for two years and that some of them just got worse while on Lupron! He seemed really confused, looked back through his notes, told me that he had written that most of my symptoms STARTED three months ago...and I nearly got up and left. Luckily, Ben and my mom were in the room with me both at my initial visit with him and this time- and they confirmed that I had stated my symptoms have been around for years, thus the countless trips to doctors, the diagnosis of Hashimoto's disease, the question of thyroid cancer, the treatment of endometriosis, and the returning to doctors FIVE months ago (before the Lupron) to figure out why the symptoms were still there after another laparoscopy and now getting worse. That's when he told me I should see an internal medicine doctor because "there definitely seems to be something wrong, but nothing endocrine related". I mean, good Lord. I proceeded to ask him yet again about cyclical Cushing's and he said that the tests he did showed it doesn't look like Cushing's, but nothing could really rule out cyclical Cushing's. He then told me we could test again randomly later. I told him I wanted to have an open order for tests so I could do them when I was feeling "high". He said I could call him for a persciption and he would set that up whenever I needed it. I asked him when he thought I should test, according to my cycling symptoms. He said "when you feel really bad, that's when you should test". Everything I've read says usually when you feel BEST is when your cortisol is high, and when you feel really groggy and weak, that's when your cortisol is dipping. I told him this, but he disagreed. I also asked about doing midnight tests, and he said that "we stopped doing late night testing a long long time ago. Blood tests aren't accurate due to the stress a needle can cause, and how that can increase cortisol". Wow. I'm just blown away by the discrepancies I'm hearing...who do I believe??? So, drumroll, I set up an appointment with Dr. Friedman in Southern California, a specialist in cyclical Cushing's. I want to see someone who has seen OTHER patients who have symptoms that cycle back and forth- especially people who have these symptoms PLUS high cortisol, PLUS a pituitary tumor. If this guy tells me I don't have Cyclical Cushing's, I'll move on. At least he knows other cases and what cyclical actually looks like.

So anyway, I went to the internal medicine doctor that that endocrinologist recommended, and so far it's the only good thing that's come out of the Mayo Clinic for me. She was awesome. She sat in the office with me for over an hour, wrote down everything I said, had several hypotheses, actually had plans for how to test these hypotheses, and hang on...wait a minute...she BELIEVED ME! She actually believed that there's something wrong with this picture, that this all looks really weird, really wrong, and that something needs to be done about it. She did a neurological exam and said my muscles are way too weak- you THINK? I know when my muscles aren't right, I was a professional athlete. It was so nice to have a doctor believe me, and then see proof that there's something wrong. Now let's hope she follows through. That's the real test.

She took more urine, and she'll do a urine culture because the pain is still there in the mornings when I go to the bathroom. The endocrinologist at Mayo said a little hemoglobin in my urine is no big deal, and I had to ASK him about the creatinine and the hemoglobin and any problems he might see with that. He hadn't even looked at it. After looking, he said "yeah, you do have high creatinine. See the internist". Argh! Oh yeah, by the way- about a month ago when I saw my gynecologist, she took a urine sample for a culture because I mentioned my little morning problem. I called about two weeks ago for the results, and they lost the sample. They said the doc hadn't written anything about wanting a culture, so they probably threw it away. Done. I'm done. I don't even know what to say anymore. I keep wanting to give up and just pretend like I'm fine. I want to pretend like I never found out about that tumor...and that it actually ISN'T a big deal. But then I think about the possibility of figuring this all out, and maybe even curing it. I'll keep pushing for now. But I'm not happy about how the medical industry is dealing with any of this.

I should probably stop typing now before I get all worked up. I'll write more about my post-Lupron journey, my start on BCP, my upcoming appt. with Dr. Friedman, and some of the very interesting hypotheses the internist came up with. I'm sorry again for the long delay...but I'm back!