New rheumy

My first visit with my new rheumatologist, Dr. S took place the day after Christmas. My dad was in town so he stayed with the kids while Ryan went with me. I figured the appt. would be a quick one and that we would be in and out in no time. I was apparently the first patient of the day and after having to change rooms due to the computer in the first one not wanting to cooperate, I had my blood pressure, pulse rate, and temperature taken. Dr. S came in shortly thereafter and greeted both of us warmly. From then we went through my history, some lab tests I had from Dr. B, and so forth. That part lasted about an hour. Truly shocking and amazing to me! I am so used to being rushed through an appt. that I was surprised to have a doctor spend so much time with me. She then gave me a thorough exam, spending lots of time on various spots as if she really was checking me out. Dr. S said I definitely have markers for Hypermobility Syndrome, yet she's not convinced I have Undifferentiated Spondyloarthropy. She also seems to think I might have Fibromyalgia, although when she examined my chest she noticed the same thing Dr. Beals did--I can't inhale or exhale well at all. If it is a lung issue than there is still a chance I have Fibromyalgia I guess. If it's a restrictive one then it goes back to Ankylosing Spondylitis as that would mean my ribcage was fusing/fused. But even with all of that she was concerned about my bone pain as Fibro doesn't cause that. She asked if anyone had ever checked me for a Vitamin D deficiency...they hadn't. We went over more things and she asked if she could make copies of all of my lab work that I had brought. Again, this impressed me because not only did she take the time to look at my "List of Symptoms" that I gave her without cringing, she wanted all information about me she could get her hands on. Felt very reassuring. At the end of our visit she wrote orders for lab tests, orders for low back xrays, and a prescription for Trazadone to see if it would help me get more rest and thus decrease my pain. Both of us agreed that rather than try to prescribe anything at that point it would be best to wait until the results of the labs and xrays were back and then go from there. She also saw no reason for me to get back on the Sulfasalazine since it hadn't brought much pain relief and had the chance of causing Hemolytic Anemia as well.

Ryan liked her, I liked her, and I felt good when I left her office. I don't know that I have Fibromyalgia...and obviously I was quite hesitant about that part given what Dr.'s A, B, and B have told me, not to mention how shitty Dr. N (the gastro) was about it all...but right now I'm just glad that she seemed open to me, treated me with kindness and compassion, and seems to want to get to the bottom of things for me so that she can help me feel better again. That's all I ask for in a doctor.

I had the blood drawn, did the xrays, and yesterday got a call from Dr. S about my results. Turns out I do have a Vitamin D deficiency and that may very well be what is causing the bone pain. I am trying not to be too hopeful about this being a "fix" for the pain, but it's hard not to be as it would make sense! That would be so wonderful if after starting the prescription Calcium that I get relief in at least that portion!! I read up on bone pain with a Vitamin D deficiency and often times people who have it do not respond to the typical pain relievers/killers--just like me. The Oxycodone takes the edge off of my pain but it never truly takes it away. Again, trying not to get overly hopeful and yet I am. :oD Dr. S also wants me to take a B12 vitamin as I was low on that, not below normal but right on the cusp, so I started 1 mg. a day yesterday. Unfortunately the pharmacy I go to closed early last night so I have to wait until tomorrow to pick up the high dose D. I will be on that for 8 weeks, then I will start a Calcium supplement from here on out. It sounds so easy doesn't it?! Weeeeeee!

X-Ray-wise the lesions/cysts in my pelvic bones haven't changed, my spine looks good, but...the radiologist forgot to check out the SI joints. Happens almost every time. Given the large "holes" in my ilium, the radiologists get very excited and seem to forget everything else. Even Dr. S agreed with me that it seemed to be the case. We couldn't blame them as they are truly "weird" and very, very rare. So, she is going to have the bone radiologist re-examine the views to see what he thinks about my SI joints and get back to me sometime next week. Overall I am pleased with her thus far and am optimistic that she will be a great ally in my care.

GI Specialists Strike Two

Last week I called Dr. N at OHSU to discuss my prognosis and ask a couple of questions. I was a tad concerned given the articles I had been reading about NASH seemed to suggest that I had a 1 in 5 chance of developing cirrhosis in 5-10 yrs. While I understand that no one knows how this will all play out, and/or if it will turn to cirrhosis for sure, I was curious to see what Dr. N thought based off of things thus far.

The phone conversation started off nicely enough. I told him that I wanted to know what he thought my prognosis was and he said that typically "this" (re: NASH) takes decades to progress to cirrhosis. For him he was more concerned about the possibility of me developing Diabetes. (As an aside here--I don't understand why he thinks I am Insulin Resistant given he said they NEVER see it coincide with Hypoglycemia. I explained that I was diagnosed as Hypoglycemic when I was younger, yet that seemed to go in one ear and out the other.) I told him about the article I had been emailed regarding MZ Alphas having their NASH exacerbated due to their MZ status...bad idea. After that things quickly deteriorated. From our first meeting Dr. N had seemed put off and very skeptical about the Alpha-1 support lists that I belong to. When I had mentioned some of the information I had learned about Alpha-1 regarding MZ Alphas and liver transplants, he asked where I had found "these people." As if it never occurred to him that there are such lists and groups in existence. I thought that was beyond odd but was willing to overlook it so long as he showed he had an open mind and was willing to even listen to what I had to say--even if it came from my "imaginary friends." (insert rolling eye icon here, please)

Somehow the topic of my liver hurting came up. Despite him telling me in the face-to-face appt. about the bag surrounding the liver, how it's typical for it to hurt as the liver enlarges, and whatnot, he backtracked. Said that he didn't think my upper right quadrant pain was from my liver. Dr. N said he thought I had Fibromyalgia. I'm sorry...I had no idea he was a rheumatologist as well! I then informed him that I had already been tested for, and cleared of, Fibromyalgia. In fact, my rheumy, and two orthos were quite confident that I have spondylarthropy--possibly Ankylosing Spondylitis. Then Dr. N did the typical arrogant, white coat, asshole thing to do. He pulled the rug out from underneath me despite not having ANY of my lab tests, chart notes, doctor's reports, etc. He told me that he wanted to "be real honest" with me...that I had "a lot going on--5 things, in fact" and that he didn't think I had any of them.

Spondylarthropy? No way.
Bile salt diarrhea from having my gall bladder removed? Absolutely not. (nevermind that the medicine I'm on for it ONLY works if you have bile salt diarrhea--otherwise it does nothing)
Alpha-1 Antitrypsin Deficiency? I don't have it!
(Not sure what the other two things are, but I guess I don't have those either)

So like...I'm all cured then, right? I mean, if I don't have any of those things then there is absofuckinglutely nothing wrong with me! SWEET! I can stop taking the Questran, stop taking the Percocet for the pain, and just go back to being normal. He's a freaking GENIUS!!

Needless to say, when I hung up the phone I was in tears. This man made me feel like I was the biggest freakin' idiot on the planet. He made diagnoses and took other already made diagnoses away from me without having the first shred of evidence to back any of it up. The only medical records he had available were my Alpha-1 results, my liver biopsy, and some of my liver enzyme tests. That's it. No CT's, no xrays, no specific bloodwork, nothing that points to what the doctor's I've already seen say. Doctor's that are HIGHLY respected in their fields. What is that saying? When we ASSume things we make an ASS out of U and ME. Yeah...he made an ass out of himself and an ass out of me. I was an ass to think this doctor had the desire to truly get to the bottom of things and to give me good care. Dr. N made an ass out of himself by just being an ass.

I am once again looking for a competent, liver specialist, that will not treat me like I'm an idiot, nor a piece of shit. Someone that actually knows of which they speak. A doctor that will LOOK at ALL of my medical records and hell, maybe even CONVERSE with the doctors I've seen, and then make the diagnosis. I have no problems accepting that I don't have A1AD liver disease--at least not at this point in time. But obviously something is going on and that needs to be watched. And please do not tell me that I don't have stomach issues thanks to the missing gall bladder. Believe me, I have tried to stop that nasty, gritty medicine with a positive "I no longer need this!!" frame of mind many times to no avail. I would love, love, love to not have to rely on any medicine...especially this one...but the medicine does its job because my body obviously needs it. And please stop telling me I do not have Alpha-1. From everything I have read and been told, if your Alpha-1 levels are routinely low, and you have at least one deficient gene, then you are considered A1AD. I DO have A1AD. If you tell me I don't I will instantly know you are not the doctor for me. It does not matter if my liver is not affected by it, or if my lungs are still fine. Alpha-1 is a part of my health regardless of if it's affecting me at this time or not. One more thing...if you are a GASTROENTEROLOGIST then please keep the diagnoses to your specialty. Leave the rheumotological stuff to the rheumatologists. Thank you.

Just breathe

Today I ventured up the hill to OHSU to see Dr. B, my ortho. He's such a nice man. Very warm, listens, and isn't full of himself. I did luck out with the orthos, didn't I?! Anyways, so just like Dr. A told me, Dr. B also said there isn't much more the ortho docs can do for me. I pretty much figured that going in, yet wanted to hear it from his mouth as well so that I knew I'd exhausted all options. Dr. B did bring up fusion surgery but reiterated that it was not something he either did, or recommended. Said he'd have to be in a world of hurt to even consider having it done if it were him. I have no desire to even think about that at this time and hopefully never will.

Diagnosis-wise we're back to the spondylarthropy. He feels that is highly likely and definitely wants me to continue seeing a rheumy. I was given two names and Dr. B said he'd refer me to one. I need to check w/the insurance folks first and check on coverage. So annoying. One thing he did do for me is to measure my chest expansion. I guess this can give an indication as to how my lungs are doing. I thought for sure he'd say all was good but nope...I'm about half of what I should be for someone my age and physical condition. I've been researching some about the "test" itself and it keeps coming back associated with Ankylosing Spondylitis. Ugh. I really liked thinking that wasn't an option. I guess we'll see what the rheumy up here thinks.

Breathing...man I wish I could breathe normally. For the past few weeks it's just gotten worse and I don't think it has to do w/the weather or allergies. Man I hope I'm wrong! The fact that my chest isn't expanding like it should could mean that my lungs are messed up because of the A1AD or it could mean my ribs/chest are fusing. Or maybe I'll get lucky and it will be something simple. I wish, I wish, I wish! Simple would be oh so nice right about now. Simple and curable! Even as I just sit here it feels like there is a huge weight on my chest making it difficult to take in a full breath. I did call Dr. B's (the pulmonologist) office and left a message for him to let him know what Dr. B (the ortho) said. Man, this is getting confusing, isn't it? All the Dr. B's and A's. Forgive me for wanting to keep some things private.

My exertion headaches are still lingering and also becoming more and more prevalent. I am wondering if it has anything to do with my shortness of breath. It would make sense...and could be easily fixed (or so I hope). I feel a little lost out here at times. As much as I bitched about certain doctors in Bend, I was at least established with them, and could get in to see them. Out here I'm starting almost completely over. At times that's okay and hopeful. At other times it's both frustrating and a little scary. Especially when it comes to things like these headaches. They do worry me. And the breathing. I'm not sure that I can hold out like this for another three months.

Oh, and my left thumb joint flared up recently. Very painful and right when I was getting back into knitting. Couple that with my right wrist that is still screwed up, my poor hands are practically useless. I meant to ask Dr. B about my right arm at my appt. and forgot. When I got home I was moving my KitchenAid stand mixer and the thing tipped putting all of its weight onto my right wrist. That was so not fun. Poor thing is never going to heal.

Ode to my liver

Thursday (the 21st), I woke up and took the first of three syringes filled with contrast for my CT scan. I can't say it was pleasant but it wasn't the most awful thing I've drank, either. The little side effect of diarrhea was unfortunately one of the ones I had. Sweet.

I finished my last one around 12:20 p.m. and headed out for the test. I met my husband at BMC and he went in w/me for a bit. They started the IV, put me into the scanner, took a pic, pulled me out and injected the contrast. The gal warned me I would get very hot very fast. What they didn't tell me was that it usually starts in your crotch. When it felt like my hooha was on fire I thought, "That's interesting," and just relaxed and waited for the heat to rush over me. Suddenly my heart started racing and it felt like there was a huge weight on my chest. I didn't panic--thought maybe it was normal side effects--but when the recorded message told me to "take a breath" I had a very tough time doing so. Nevertheless, I was determined to finish the scan. One of the techs came back in to check on me and I told her about my heart racing. She said it was normal. I then told her about the weight on my chest. At first she tried to say it was normal as well...like a panic attack, yet I knew better. After living w/panic attacks and anxiety for a year and overcoming them, I could definitely tell the difference. For one, I wasn't scared--hadn't been scared at all--and even though panic attacks do make you feel like you are dying, my chest NEVER felt as if someone was sitting on it. Needless to say, the tech got the doctor and a flurry of activity began. I had the pulse ox on me, the doc was taking my heart rate, and there were several people watching and waiting. Throughout it all I remained calm despite being a tad nervous. Eventually the weight lifted and I told them I definitely wanted to finish, so they slid me back in and took the last image.

Afterwards I had to stay for about 20 mins. to be sure I was okay. The more time passed, the better I felt. The doctor did say I had a moderate reaction to the contrast yet felt it would be okay for me to have it again in the future. Can't say that I agree w/him on that one. While I did my best to stay calm it was not fun and not something I want to experience again. Especially knowing that allergic reactions usually get worse the more you are exposed to the thing that caused the reaction in the first place.

Dr. B's PA called that morning as well and prescribed me Gabapentin (Neurontin) to try. No pain meds, though. I was put on 100 mgs. a day for one week w/instructions to increase the dosage by 100 mgs. every week until I hit 900 mgs. At first that seemed fine until I started thinking that it would be probably 6-9 wks. before I noticed any improvement in pain. That sucked. DH picked it up for me that night and I took my first one before bed, as per the instructions, and woke up the next morning feeling very tired. I also had residual "d" from the contrast and possibly from the Gabapentin. Yeah.

As Fri. wore on I became more and more uncomfortable both under my ribs on the right side as well as in my joints and muscles. I tried picking up my results for the liver CT but they hadn't been transcribed yet. Like a good little patient, I waited to hear from Dr. B as long as I could. When the pain got very bad I gave in and called. No one there on Fridays. So I called my GP--she wasn't in that day. Neither was my ortho, but I asked if they could at least give me some pain meds to tide me over. The lady who took my call said she'd look into it and then never called back.

By the time DH got home (3'ish) I was hurting big time. I finally gave in and went to the Urgent Care center. The doc checked out my CT and found out that my liver was very enlarged...much bigger than the CT done for my gallbladder back in Feb. of last year showed. There were no signs of cancer, a tumor, or blockages--yeah! Again he palpitated my abdomen and I was incredibly tender, so the doc ordered more bloodwork as well as a urine test. Then I waited. DH and the kids came down. An hour passed and everything was back. We were taken into a room and told that everything but one liver enzyme came back normal. Which was good...and yet doesn't explain why my liver is so big. He highly recommended that I not wait to see Dr. B until the middle of July and that if Dr. B wouldn't see me to get into my GP right away. The pain is most likely from the "bag" surrounding the liver. When the liver is inflammed it can cause tenderness and fullness, both of which I'm definitely dealing with. Despite his initial misgivings of prescribing me pain pills due to the nature of my illness, the doc agreed once he knew I had been on 1 a day for awhile. I was so relieved because I honestly didn't know what I was going to do if he hadn't given me any. My legs and thighs felt like someone had run over them w/a truck.

In light of all of this I am now almost convinced I have the Alpha-1 deficiency (and quite possibly the G6PD deficiency as well) and will be highly pissed if that is indeed the case, and the reason why my liver is enlarging, since Dr. B completely dismissed it. I have spoken w/another local person dealing w/liver issues and she recommended a doctor here and one in Portland. I will be calling the local one on Mon.

Mentally I'm hanging in there but it's tough. Knowing for sure that there is something indeed very wrong w/my liver and yet no reason as to why (and thus no way to know how to fix it--at least for now) freaks me the hell out. Mostly I am calm, reading as much as I can so I know what to ask now and making me feel somewhat in control, yet at times I cry because I have a gut feeling that this is the beginning of a new path for me. I have been misdiagnosed so many times, dealt w/each diagnosis the same way (reading and waiting), accepting it to a degree, and trying to learn accept life w/the new possibilities of what lie ahead. But, there was never any true concrete proof. The AS thing was the closest to being a real diagnosis, yet I was HLA-B27 negative. There is still the slim chance I have it...or at least have some sort of joint/tendon/muscle issue in the SI joints (well, that is a given w/all of the issues I have there). Yet now when you put together the Alpha-1 bloodtests being routinely low, my liver enzymes being elevated, and now the liver enlarging you have to wonder if there's something to this. I also have many other symptoms that I've had since childhood which can be linked to the symptoms of A1 deficiency.

Things that make you go "hmmmm..." I guess we'll see what tomorrow holds.