Autonomic Neuropathy?

Gastroparesis is caused by partial paralysis of the stomach, via damage to the vagus nerve. In many cases this damage is idiopathic, meaning doctors have no idea of what caused it. Mine gastroparesis has earned itself that idiopathic label. But as I’ve been feeling worse, I’ve been looking into causes and symptoms of vagus nerve damage and think that the damage to my vagus nerve might be more extensive then just in the region of my stomach.

According to the Medline Plus definition autonomic neuropathy is a collection of symptoms resulting from damage to nerves in the autonomic nervous system. Chief among these nerves is the vagus nerve. And I have many of the symptoms listed on the Medline Plus site. It would explain why my pupils are occasionally different sizes, why I physically startle at even the tiniest things (like the windshield wipers I just turned on, or someone sneezing), my heat intolerance, my “not asthma, asthma”/breathing suppression, why I don’t notice I need to pee until I almost can’t hold it, why I choke on my spit so easily and feel like something is stuck in my throat sometimes, and why I sweat like I need to cure the drought.

Which, if is the case, what caused my vagus nerve to be so damaged? It seems awfully widespread to be caused by the degeneration in my cervical spine- but could that be it? Could I actually be hopeful that I could address my cervical spine (which up to this point has been blown off) and maybe fix some problems? Or should we be looking more closely for something else that could be causing damage?¬† I really don’t think my vagus nerve is just going to become damaged without some sort of cause…

But of course all of this requires I talk to my doctor about it- and I honestly don’t know if I have that kind of strength right now.

I hate bringing something up and getting blown off. Having tests come back repeatedly showing nothing. I hate breaching a subject and feel like I’m being judged for not being satisfied with the diagnosis I already have- like I’m seeking out more, when I really just feel like something is still unaccounted for, still missing, from the “what is wrong with me” puzzle. I hate the vulnerability of not being able to do anything if my doctor doesn’t agree with me and turns down my request for more tests or when a specialist declares they’ve done all they can for me and won’t see me again. I have insurance, I have money, I am desperately trying to do everything I can to get better, so why are you making this so difficult? Why are there so many gatekeepers in medicine, whom I must prove I’m worthy to be seen by, to be taken seriously by, to be believed?

 

Apparently I need to discuss this with my therapist on Wednesday. Hopefully then I’ll be able to approach it with my internist and maybe get back to the neurologist. Maybe then we’ll make some more headway and I won’t feel like my world is always collapsing on me.

Maybe.

 

 

 

 

Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with. ūüėČ

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!

Update

The ultrasound with a fatty meal revealed no stones, no obstructions, no thickening of the gallbladder wall, no sludge, bile ducts within normal diameter, and an ejection factor of 75% 20 minutes after consuming the fatty meal.

So, now I have no idea what to think about my gallbladder. The HIDA was low, the ultrasound was on the high end of normal. Nothing consistently reproduces my symptoms.

It’s been a week since the ultrasound and blood work, and I still haven’t gotten the blood work report yet. Which I find strange. I got the ultrasound report on Monday. And a liver panel and lipase and amylase don’t usually take that long to run, as far as I’m aware.

I haven’t heard from Dr. S about either test. Or the referral to the neurologist, and I’ve had numbness whenever anything presses on my middle finger for about three weeks now. The involuntary leg spasms have been more frequent the past couple of weeks. And the ocular flashes are getting more frequent again. Its something I would like to get checked out before classes start in fall. I’m already behind enough on my own research and academic progress, I really don’t like being behind in classes too.

I’m SO MAD. The ongoing saga of my uterus.

I’m still bleeding. Thankfully, no longer overflowing the Diva cup, but still bleeding.

Yesterday, I got the student health center to write me a referral to my local GYN, Dr. H, so that it would be more affordable. I called her office immediately after I got the referral page. That was around 1pm. I had to leave a message for Dr. H’s nurse- who I hate, she’s a moron.

Dr. H’s nurse called me back around 1:50pm. She said Dr. H didn’t know anything about the letrazole, which I find interesting for two reasons 1) Dr. H and I talked about it together over the summer when we had to find Dr. Y again, and 2) if you have a degree, and specialize in reproduction, you should know what an aromatase-inhibitor (AI) does- even if you aren’t familiar with the specific drug. …So the nurse says I need to call Dr. Y’s office. I explain that 1) I have talked to Dr. H about this drug/treatment before, so I don’t believe she knows nothing about it, 2) an AI should not be causing this, that’s not how they work, this level of bleeding after being on an AI for almost a year is very unusual, and 3) I cannot afford to see Dr. Y again as he is not in my insurance network – so even if Dr. H doesn’t feel comfortable with the drug, she can take me off it now, and this needs to be seen. This was after having a long discussion with the nurse about if this bleeding was near when my normal period would be? HELLO WHAT DOES MENOPAUSE FOR ALMOST A YEAR MEAN TO YOU?! No, it’s not near my normal period time, as I haven’t had a period in over a year (I was on continuous BC- prescribed by Dr. H nonetheless, before that for 9 months). Then on the amount of blood I was loosing- and the nurse couldn’t get it into her head how mL as a measurement of blood works. She only wanted to know how many pads I’m going through- I’m using a menstrual cup, I can’t tell you how many pads I’m going through. I can tell you that I overflowed my 30mL cup, and an average disposable pad holds 5 mL, so that’s approximately 6 pads. She couldn’t understand that math either. … So after having that discussion, and me explaining the numbered list above, all she would do was insist again that I call Dr. Y’s office, and then call her back.

So I call Dr. Y’s office and get forwarded to his P.A.’s answering machine. I left her a message explaining the whole situation.

5pm comes and goes, and I don’t receive a call back. At that point I decided to send Dr. Y’s P.A. – we’ll call her J, an email. I have her email address from trying to plan my surgery this summer. I explain the entire thing again, in email, and send it off before I head out for my class.
Within 30 minutes I get a text message from J, asking if she can call me in about a half hour. I text back that I am walking into class from 7-10pm and unable to talk in a half hour. She says to text her as soon as I can speak to her on the phone the next morning. As it turns out, my class takes a 10 minute break at 8:00pm. I text J that we have a break so I can talk right then, if she wants, and she calls me immediately.

She says that Dr. Y is now in-network with my insurance…but unfortunately she has my old insurance information. I tell her my new provider, and of course, that is the one company he is not associated with. She says she understand the situation then, financially. So, she says she’ll fax my local GYN an order for an ultrasound, so that Dr. Y still gets the results but I’ll be billed through my local GYN (who is in-network). That I shouldn’t be bleeding at all on the AI, so after the ultrasound results- she’ll try to see if it can be handled up here, or if I’ll have to come down and see him. And she’ll have Dr. Y decide if we need to change my dose. I then had to explain that my new insurance won’t cover the AI, so I only have what I last ordered on my old insurance left- a 90 day supply. After that, I can’t afford it anymore. She asked if A and I were planning on having a baby in the next year or so, and I laughed and replied we’re second year PhD students. We’ll only do that if the ultrasound comes back that everything must go soon and we HAVE to. She expressed that we may be able to try other pills then, that are sometimes more affective after surgery than they were before, but we’ll revisit that after the ultrasound results come back. And, that if I text her my local GYN’s fax number, she’ll send them the order first thing in the morning.

Remember, this is after 8:00pm, on her personal cell phone. I can’t express how much I love J. She is wonderful.

So, this morning I get a text at 9:12am letting me know the fax had been sent, and I should be able to schedule the ultrasound soon. Great!
I spent all morning and afternoon at a conference for work, so I made sure to pick a seat at the back of the room where I could easily leave, and kept my phone on vibrate and on my lap, so that when Dr. H’s office called I could easily answer it.

Fast forward to 1pm and I still hadn’t heard from Dr. H’s office. We were on lunch break at the conference, so I took the opportunity to call. I reached a receptionist and explained that my specialist had faxed over an order for an ultrasound that needed to be scheduled. The receptionist forwarded me to Dr. H’s nurse’s line. Once again I got the answering machine and left a message.

So, I wait for them to call. The conference ends, I go to the grocery store, I go home, and still nothing. At 4:30pm I decide to call them back. I want this scheduled before the weekend.

I reach another receptionist, and explain “my out of town specialist faxed an order for an ultrasound this morning, so I can have it done locally. I called around 1 and got forwarded to [Dr. H’s nurse], but got her answering machine. I left a message but haven’t heard back from her, and want to get this scheduled before the weekend.”

And what does the receptionist say? “Oh she left at noon today.”

Logically, I ask “why did I get sent to her line if she wasn’t here?” because, shouldn’t they have said she wasn’t in when I called, not say, I’ll forward you to her?

Here’s where I start to get really mad. The receptionist starts to get snippy.She says “its medical, all that stuff immediately goes to the doctor and nurse, we can’t do anything with it until the doctor signs it. Dr H left before [her nurse] did.”

Okay. The fax got there well before noon. I know because J texted me. I explain this to the receptionist, and ask if it’s possible Dr. H has signed it already, as there was time from when it came in to when she left the office.

And snotty receptionist replies “other thing can come in before yours” like that justifies Dr. H not paying attention to things that are faxed to her that morning while she was in. (And since I called yesterday about the bleeding, and she said to talk to my specialist, you’d think that something from my specialist’s office would get her attention).¬† I ask if the receptionist can see if Dr. H had signed it before she left. ..and surprise surprise, of course she can’t.

I’m already mad, and you can hear it in my voice. Her snippy attitude isn’t making it better. I know, its Friday, and you may have had a long day. Usually I am super sweet to receptionists, and others in the service industry because they’re doing what they can. But I am a patient clearly invested in my health and being ignored. I have to wait over the weekend to find out the cause of my unusual bleeding, that my specialist’s P.A. was concerned enough to talk with me far after hours about. My being short was justified. I reply with “fine, I’ll call back first thing Monday then” and hang up.

At this point, I’m so mad I’m in tears. I mean are you fucking kidding me. I get people are busy and can’t always be in the office- my whole office was at a conference today so not there to answer phones. BUT WERE FUCKING CAREER COUNSELING NOT SOMEONES MEDICAL CARE. And Dr. H works in a fucking practice with a bunch of other doctors. IF A SPECIALIST CALLS IN A TEST FOR UNEXPECTED HEAVY BLEEDING (WHICH I FUCKING TALKED TO DR. H’s OFFICE ABOUT YESTERDAY AND THEY PUSHED ME OFF TO HIS OFFICE) THEN YOU SHOULD MAKE SURE TO GET THAT TEST SCHEDULED. ESPECIALLY RIGHT BEFORE THE FUCKING WEEKEND. NOW I HAVE TO WAIT UNTIL MONDAY FOR THEM TO EVEN SCHEDULE THAT SHIT, AND WHO KNOWS HOW LONG IT WILL BE BEFORE THE IMAGING CENTER CAN GET ME IN. I MIGHT NOT EVEN BE BLEEDING BY THEN. ARE YOU FUCKING KIDDING ME.

Oh I hate her office staff so much. They’re shit at contacting patients too- one time they scheduled me on a day Dr. H wasn’t even in that office, and said they called me to tell me that and give me a new time BUT I NEVER GOT A CALL FROM THEM.

GAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

How can you justify not taking care of your patients?
Things like this make me thankful for medical professionals like Dr. B2, and J. But it shouldn’t. All medical professionals should care about their patients as human beings concerned about their well being. It shouldn’t be the exception.

Bloating- Next step: CT & low FODMAP

I met with Dr. S this morning. Surprisingly, its been exactly one year + one day since I met with her the first time.

She is going to check with the records from Dr. B2, and make sure the gluten-sensitivity test was reliable. She also ordered me another CT scan- so on Monday I’ll get my little dose of radiation and hopefully we’ll get something useful from it.

And, saddest of all, she is having me try a low FODMAP diet for the next month. Looking through what I can and can’t have, and I’m pretty sad. It’s not like I ate all the high FODMAP foods often, but we do cook a lot with garlic and onion, and no camomile or oolong tea is quite disappointing. The worst part is making my poor husband go through this with me. For some things, like the wheat products, I can simply abstain while he enjoys his (he loves bread, and would be pretty devastated to give it up), but we’re still going to have to make only one dinner, so a decent portion of what he eats will have to change too.

Overall, I’m not convinced it’s going to help, and its going to cost us more than our usual grocery shopping. But, I’m willing to give it a try.

Bloating – Update

The gluten sensitivity test (the tissue transglutaminase antibody test) came back negative. That rules out Celiac Disease.
We also did a blood test for H. pylori, which came back negative.
So now I’m being referred back to Dr.S, the gastroenterologist. And, somehow I got super lucky and managed to get a referral for tomorrow at 9:00AM! They had a cancellation, which I couldn’t be more thankful for.

I’m sure tomorrow’s appointment will be just another run through of the symptoms, but hopefully that will lead to scheduling the ‘scoping, and getting to the root of whats going on. Dr. B2 said to make sure I show Dr. S the CT results that showed my small bowel intussusception, which I certainly will be doing.

Here’s a picture of some bloating from this afternoon, before I headed to class.

20150414_152729

My belly is quite large. It doesn’t always stay that large- it is usually worse when my bladder is full–which makes sense if the full bladder taking up more space, making the bloating more noticeable. But, I also noticed that, boy, that amitriptyline and letrazole has made me chunky. I weighed 144 lbs at my visit to Dr. B2; I weighed 123 lbs at my surgery back in August. It is strange to me, gaining weight so quickly now, as took me foreeeever to break 100 lbs growing up…I think I broke 100 lbs my senior year in high school, and weighed a consistent 115 lbs all the way through my undergrad degree. I broke 120 lbs when these health things really started to snowball into what they are now.

But thinking of the past isn’t going to get me anywhere, I’m staying focused on the present as much as I can.

Bloating – Revisited

Way back last June ago I posted about bloating.

I expected the bloating to resolve post surgery, but it hasn’t. It’s actually gotten worse. I’ve been trying to seek out help for it but got blown off by Dr.B every time I’d bring it up- because I wasn’t very bloated when I’d show up to my appointments early in the morning (with most of my classes in the afternoon/evening, morning appointments are necessary).

Earlier this week I became incredibly bloated after having lunch with my coworkers. I decided it was time to take advantage of the triage option at my university’s health clinic, so that someone (medical) could see me when I looked 6 month pregnant and document it. Of course, the day I walked in the clinic was PACKED. They managed to squeeze me in, but I could only see a P.A., whose background was in pediatrics/preventative medicine. He concluded that, yes- I was severely bloated, and that I should make an appointment to see one of the internal medicine doctors at the clinic. Then he prescribed me some GasX- which did nothing.

Today was my appointment with the internal medicine doctor- another Dr. B, I’ll call her Dr.B2.
Guys, Dr. B2 is amazing. She’s my new favorite doctor. Not only did she listen to me, she looked through my entire binder of medical records AND praised me for having them all available and being so well prepared. We went through possible causes of bloating, such as taking in too much air while eating or drinking, gas-inducing foods, and gluten and/or lactose intolerance.

We concluded that I don’t take in too much air- I can’t really chew gum as it causes my jaw to dislocate, I don’t use a lot of straws, or talk a lot while eating. I’m going to keep an eye out for triggering foods- but it’s mostly vegetables, which are difficult to avoid. I don’t think its a dairy sensitivity, as I don’t eat much dairy and when I do I haven’t noticed much problems. I’m also going to cut out my carbonated beverages (sad, as I love my vanilla coke). And she’s sending off blood work to test my gluten sensitivity.

If the gluten sensitivity test comes back negative she’s going to refer me back to Dr. S, the gastroenterologist, to get scoped – both ways; especially after having that¬†intussusception show up on my CT scan in 2013, she thinks getting a good picture of what is going on is important. And I totally agree.

All and all it is incredible to have a Dr. actually listen to me and look through all my records, then not only agree but suggest that we do testing rather than wait-and-see. I really needed that.

“The Healing Power of Your Own Medical Records”

This morning my mom shared a link with me to a New York Times article entitled “The Healing Power of Your Own Medical Records.”

The article describes a 26 year-old PhD student at M.I.T. who had access to his medical records and used them to push for treatment of a brain tumor. His graduate education and resources enabled him to research symptoms of his tumor growing, recognize them as they came to affect him, and push for further medical attention. The article then goes on to suggest the benefits of allowing patients access to their medical records- they can become more informed about their condition, and more complaint with treatments.

I find this article comes at a particularly apt time for me. I have diligently gone to all of my medical care providers and demanded a copy of my medical records. In some cases they give me the entire file, others they only give me the digital file. In one case, my doctor had to approve what she was willing to give me. Sometimes I have to pay for it, other times its free. At the end of the day I have the most complete collection of medical records I could gather (everything except my ophthalmological care- which I should collect and add to it). It lives in a binder that I bring with me to each and everyone of my medical appointments.

As you know, I am also a PhD student. I have a background in Animal Science and Reproductive Physiology. I have access to University research, and understand medical jargon. Plus I have rather impressive research skills. In my training as a graduate student I have been taught to collect all relevant data, analyze the data, integrate information, and provide thorough commentary. As such I have shown up to doctors appointments with printed copies of documents detailing how I’ve been feeling and information I think is important to my health care provided.

And yet all I’ve ever been met with is:

  1. Evidence in my medical records that my doctors do not listen to me when I speak
  2. Doctors who think I am over analyzing or “paying too much attention” to my health
  3. Doctors who refuse to look at the binder of medical records I bring to them
  4. Doctors who are only willing to give me the 15 minutes of a standard outpatient visit

Which leaves me feeling depressed, and I may go as far to say even traumatized each time I have a doctors appointment. I have anxiety about making doctors appointments, even though my pain is returning, and even though I am still certain there is something going on with me that is not being addressed and needs to be–something wrong–because I know I’m not going to listened to or treated like a patient who knows more about their own health than anyone else, let alone as a competent person- who has advanced degrees and clearly knows something about reproductive physiology, research, and making logically and critically sound decisions. Honestly, I avoid seeking out care because of this fear. Every time I think about making a new appointment the memories of the previous failed appointments re-surge. Its to the point now that I think I need to seek out psychological counseling to help manage it.

My point here is that having access to your medical records isn’t inherently healing. It actually can make things worse for a patient’s experience- serving as more evidence that they are not being heard. What would be healing is attentive medical professionals. What would be healing is¬†medical professionals that actively listen. What would be healing is¬†medical professionals that show they care about the patient as a whole- as a person and not just as a symptom or collection of symptoms, or someone who is taking up their time.¬†What would be healing is being taken seriously by medical professionals as agents of our own health. I’m not denying that what the M.I.T. student was able to do with his records isn’t important- actually, I’m arguing that it is essential to good health care; but, it all comes down to the medical professionals. The M.I.T. student was incredibly lucky that his doctors took his research and experiences seriously and treated him as knowledgeable of his own condition; that they were willing to pursue his medical directives- and do so in a timely manner; that when he spoke about his condition and thoughts about the direction it was going, he was heard.

Apparently I am not that lucky.

And since I am also 26 and also a PhD student (actually one with more relevant degrees relative to the medical field), I have to wonder why it is that I am not being taken seriously.

Doctor Rant

Visited Dr. B today, after a very stressful morning (my poor doggy woke us up early with bloody diarrhea, so we’re off to the vet this afternoon). I always leave her office upset. She increased my¬†amitriptyline prescription to double the dose, since it had stopped being effective at controlling my ocular migraines. It also had stopped helping me sleep and wasn’t doing a good job of controlling my aching muscles and joints. I tried to talk to her about my aching muscular-skeletal system, but she brushed it off- asking me “do you spend a lot of time sitting, reading?” which of course I do- I’m a graduate student and she knows it, I spend a lot of time reading or working at my computer. But I always have, and I don’t think this pain is a result of that. Then she said, “well have a good day” and left. I know I can be a frustrating patient, but its frustrating for me too, especially when I’m (well, my insurance anyway) paying you to give me your attention and help determine ways to actually make me feel better and have a decent quality of life! And, I was so worried about my dog that I completely forgot to ask her what inflammation test she ran last time she did my blood work. Endometriosis is an inflammatory disease and I want to know if the test is sensitive enough to pick up the inflammation as a result of it. I don’t think it is, but I want to make a well-informed decision about remaining on the letrazole once I have to switch insurance companies in March. The new insurance won’t cover it, and I need to determine if it’s worth paying for it out of pocket. I’m just so frustrated about doctors who blow you off or ignore you, that I’m not sure I can even muster up the strength to call her office to talk to her about it.

I wish my doctors were as good as the veterinarians I take my pets to. I work with them a lot (one of my kitties Icarus just had major knee surgery and was doing continuous acupuncture before that) and they never second guess what I tell them. If I want to test for something, they’ll tell me the cost, and if I agree they’ll do it- not tell me its too expensive so we should just wait and see. They are always kind and compassionate with my animals, and have gone out of their way to make their veterinary experience less traumatic and more enjoyable. They remember me, even when I’m in with a different pet (which is impressive, as I take my pets to a veterinary teaching hospital- part of the local veterinary school, so we’re always seeing different veterinary students, etc.), and always ask how the others are doing. They’ll even call around to the local pharmacies and check with their own to find the cheapest place to get a prescription filled. And, best of all, they don’t brush me off or make me feel bad when I come in with some concern over my pets- even if it turns out not to be anything serious. Yeah. I really wish my doctors were as good as my veterinarians.

Just in Time

I am in pain. Like someone has beaten my entire body with a nerf bat.
It isn’t the old, familiar pain of my endo and adeno; no, I am actually quite happy to report that my pelvis only very rarely gets any of that deep burning, stabbing, cramping pain. And I wouldn’t rate this pain at anything over a 4. But it’s gotten pretty constant, and every inch of me is both stiff and tense. I don’t think my amitryptaline is working very much anymore. I’m having trouble sleeping, no longer craving carbs (not that I’ll complain on that one), wading through brain-fog, and getting ocular flashes again; plus the pain. I guess its time to call Dr. B. Too bad it couldn’t hold off until closer to Feb. 10 when I was scheduled for my follow up with her.

And all just in time for the next semester to start. Great.