So this is the transcription of my appointment this morning with a neurologist. I took the new nosology published in May of this year, 2017, in the American Journal of Medical Genetics, and the research paper entitled "Neurological and Spinal Manifestations of the Ehlers-Danlos Syndromes" (also published in February of this year). I was going on a third attempt to discuss the possibility of Chiari zero, the benefit of getting an upright MRI when I got sidetracked by the doctor's blatant unwillingness to even look at the paper initially.
I had recorded our appointment out of frustration of the exact same thing happening at my last neurology appointment. I have Kaiser insurance, and in no way wish to diminish the experiences of those who have had similar, and/or opposite experiences with physicians. For this reason I will refer to this physician as only "Dr." during the following transcription. I remember feeling like there was awkward silences and ended up word vomiting a little out of confusion and frustration.
I realize after having transcribed the following encounter, that I did not explain some of my symptoms properly, accurately or in a helpful manner, and did not pick up on several cues from the doctor that may have helped communication. Anything in parenthesis is just my commentary as an afterthought as I was transcribing. Communication does take two, and I do not wish to glorify my communication skills that are anything but perfect, however I still feel like overall the encounter was just horrible. I was so upset at the end that I actually left the medical facility crying.
6/27/2017 9:46 a.m. duration 23 minutes, 17 seconds:
Dr.: Hey Melissa.
Me: How are you?
Dr.: I'm Dr. ***
Me: Nice to meet you.
Dr.: Let me just pull up your chart.
Dr.: How can I help you today?
Me: So I have a lot of pain at the base of my neck, that radiates up. I get a lot of consistent tingling in my arms, a lot of feelings of weakness. I do yoga almost every day, and it's a 47 minute practice, and I would say the majority of days, at least 50% of my practice my muscles will just spasm. It doesn't hurt or anything, but it's mainly in my legs, they'll just sit there and shake. I didn't really think it was anything big, I know it's actually common with EDS, but my husband doesn't like it. It's just, visually, a little jarring.
Me: But, the pain in my neck really keeps me from sleeping, I don't know if there's some sort of like muscular issue since the pain, it kind of radiates up.
Me: (I realized I had started off with a muscular-sounding issue and wanted to get back on the neuro path.) I get ocular migraines, light will create migraines, loud sounds will give me migraines. The amitryptyline I took two days, both days I literally could not pull myself out of bed, like I couldn't wake up, I was super groggy, I couldn't even convince my body to move. So I stopped taking them.
Dr.: Okay, what dose are you on?
Me: I believe they gave me a very low dose. (I was starting to get nervous, how could I not know!)
Dr.: 10 mg
Dr.: So you're not taking that?
Me: No, I stay at home with my 3 year old, I can't not get out of bed.
Dr.: Okay, did you try taking any vitamin supplements for the migraine headaches?
Me: No. What supplements?
Dr.: Magnesium oxide, and b2?
Me: No, I did not.
Dr.: Okay, and so you also see the rheumatologist, right?
Me: Yes. (Muscular, there goes rheumatology, I had already messed up.)
Dr.: And is he treating you for the fibromyalgia?
Me: And I also get overwhelming weakness in my shoulder sometimes, even when I touch it now I feel like every little muscle fiber, every little tendon...
Me: So I mean I don't, what do you think, I don't know. (I wasn't done explaining my weakness or neuropathies, and laid this horrible response on the table. Definitely not where I wanted to steer the conversation.)
Dr.: I mean it sounds more like you know musculoskeletal symptoms, or myofascial symptoms to me. I mean usually when there's pain that radiates from your neck to the head, and pain, it's usually due to neck tension or maybe laxity of the neck due to the EDS so those are possibilities that come to my mind. (First mention of "tension" as the culprit, I didn't notice him sprinkling it throughout the conversation. Yes I'm tense, no one will listen to me, but that's not what hurts.)
Me: There is a new research, I brought it with me, I'm not sure if you're interested, that was published in May, about EDS and neurological and spinal manifestations, I brought it with me if you want to read it or if you're interested.
Dr.: Mmm, no it's okay.
Dr.: But, um.
Me: So how else should we treat me if,
Dr.: Well I mean, let me get some more information, examine you and then we can kind of see if there's anything I can help you with. I know you had an MRI of your brain less than a year ago, you've had an MRI of your lumbar spine, completely normal looking. Xray of your neck recently was fine. Didn't show anything you know remarkable, or significant, or anything to worry about. You had some shoulder testing done as well, or not shoulder the hip. You had an MRI of your wrist last year. A lot of tests. Okay so I'm going to go ahead and examine you.
I won't bore you with the full examination, other than he did find "tension" immediately in my shoulder, and tightness. It was more of a back and forth, yes/no sequence of questions that persisted for several minutes. My muscles even began so spasm around the 6:47 minute mark, and he waited for me to "relax" but did not acknowledge it otherwise.
Me: If I rest my arms on anything my hands will go numb and they'll start at the pinkies.
Dr.: Do you feel like you lean on your elbow's a lot?
Me: No, I just notice I when it happens, I don't,
Then he poked me with a needle on my fingers, watched me walk, told me I was pretty tense in "those areas" meaning my shoulder and neck, I think. He didn't decode his response to me, and used t-rex hands to refer to "those areas."
Dr.: So I'm thinking some of this discomfort that you're feeling back here is most likely from tension, tightness in your muscles traveling up here (neck). That's pretty common because all of these muscles are kind of interconnected and it can go all the way to the front of the head. Usually I recommend putting heat and doing stretching exercises. (Yup, knows zero about EDS.)
Me: Okay. (Okay? So just listening to this again as I type it made my eye twitch a little. I cant believe I said okay. I must have been in shock.)
Dr.: So usually one of those heating pads that you can put in he microwave and heat it up, wrap it around your neck and shoulders and then if you keep it on there for 15 minutes and then you do stretching exercises. Um, tingling in these fingers could be, people lean on the elbows, or they can be bent for long periods of time, or if you sleep on a bent elbow, or elbows bend during sleep it can compress a nerve here (yes the ulnar nerve) and that's why when I touched you here you felt a little tingling going down to these pinky fingers. It's from that. Not much you can do about that except avoid leaning on your elbows or keeping your elbows bent for long periods of time. At night time we suggest splinting your elbow, like putting something to prevent it from bending. (I must have had a glazed over look on my face from him explaining heating pads, and how to not bend my elbow, for him to explain the function of a splint. I have at least half a dozen heating pads, and more splints than I know what to do with.)
Me: Mmhmm (Yup, I'm trying to figure out how to approach this.)
Dr.: Usually I recommend a folded towel wrapped around your elbow and then put duct tape so it stays in place.
Me: Okay. (Yup don't think I actually heard the duct tape reference at the time. I'm pretty sure I would have addressed it if I had. Newsflash: duct tape cures EDS!)
Dr.: That way it's comfortable and you don't actually bend the elbow completely and if you're leaning on it in your sleep you can have the cushion from the towel to prevent that compression on that nerve. (Transcribing this I seriously do not remember the in depth detail of his duct tape splinting instructions) Because that nerve goes to the surface so people who lean on arm rests, or when they're in their car and lean the elbow out the window they get a lot of this tingling here (pinky) from that (elbow). But for the neck tension and cervical pain, I would recommend using the heat, you can use a muscle relaxant as needed.
Me: So you don't think the neck tension could be a result of maybe years of instability of the muscles?
Dr.: It's possible. It could be bad posture, it could be your pillow, it could be poor ergonomics looking at a computer, it could be other things too.
Me: But, I mean EDS is a connective tissue disorder.
Dr.: Right, but it does cause instability of the joint that your muscles have to compensate for that. You know because it makes your joints kind of lax. You know instead of your head kind of dropping your muscles have to compensate for that and it causes more stress on the muscles, and tension. (Kind of dropping? I listened several time, and that's what he said.)
Long awkward pause as I absorb the depth of how much this doctor really doesn't know about EDS.
Dr.: But that would be my recommendation then. It looks like you've had acupuncture before. Was that kind of the chronic pain that you had?
Me: Yyeeeahhh? I'm still going actually.
Dr.: Mmhmm, is it helping?
Me: It is. I've done a little bit of an elimination diet and my consistent headaches are gone, but I still get the bad pain at the base of my neck, and I do think it helps with overall pain, but I think the yoga helps a lot too. (Not sure why I was word vomiting all of this.)
Dr.: Mhmm, (typing) yeah so definitely you know the yoga can help especially with,
Me: I guess I'm just concerned about the long term effects if it is an instability, what I should keep an eye out for, you know what I mean if it is an instability I know heat pads will help it just doesn't seem like, (I was drowning.)
Dr.: Well I mean, it's not, it's more a musculoskeletal thing, not a neurologic thing so I mean that's really all I would be able to recommend as a neurologist. I don't treat musculoskeletal, connective tissue disorders.
Me: Who does?
Dr.: Rheumatology works with connective tissue disorders. Physical medicine and rehab works with neck pain and back pain but that's usually if there's something wrong with your spine, you know your xrays, MRI's looked okay.
Me: Do you think the laxity in the spine can cause maybe a compression we can't see on the imagining?
Dr.: I don't think so. (Awkward pause.) So I'm going to type up some instructions for you here.
Me: what about the muscle spasms?
Dr.: I think that's all related to either your musculoskeletal issues, the EDS, maybe the fibromyalgia.
Me: I had a positive Hoffman's sign on this side, I know it was asymmetrical. Is that something that you would look at, or? (I knew it was something that would peak his interest and buy me time to come up with some half decent rebuttal in this this failing situation.)
Dr.: And when was that?
Me: Last year.
Dr.: Who tested you?
Me: The physical medicine doctor, Dr. N***.
Dr.: Give me a second here. (Got him!) Let's take a look. Usually in isolated Hoffman's sign doesn't really mean much and I'm not even getting it on, oh there we go. Yeah so like i mentioned an isolated Hoffman's sign by itself without any other abnormalities is very non specific and doesn't really hold much to it.
Me: It is usually an indication of some sort of nerve issue though right?
Me: Who does nerves, who deals with nerves?
Me: Because I have a lot of nerve pain and ,
Dr.: Right and that's why we refer patients with chronic nerve pain to pain management. We don't really treat chronic pain.
Me: So what type of nerve issue constitutes neurological intervention, or treatment?
Dr.: You mean what would we treat?
Me: Mhmmm. (I guess this is my passive, YES!)
Dr.: We would treat migraine headaches, we would treat peripheral neuropathy, but I think your pain is kind of from a multitude of factors not necessarily nerve pain.
Me: I mean if you would like to read the research it explains quite extensively about the connection between the two,
Dr.: Right, but with my experience as a neurologist I don't treat that type of pain.
Me: Do you have any type of patients with EDS? (Type Melissa, really, I swear I'm half coherent most of the time.)
Me: So you're not very familiar with it?
Me: And you're not interested in learning,
Me: Alright then are we done?
Dr.: Um es, let me just,
Me: It's very, I hope you understand, it's very frustrating for me as a patient who has something that I come for help and you don't want to learn,
Dr.: Right, but the thing is that this isn't something we would treat even if I learn about it.
Me: How do you know?
Dr.: Because it's, I don't think it's neurologic.
Me: But you don't know. You won't even look at the literature. It's from the American Journal of Medical Genetics, I'm not making it up.
Dr.: Well I know you're not, but,
Me: But you see how I feel like I'm being dismissed before you even take the opportunity to engage. You're just going off what you've done for years which has nothing to do with my condition. (Yeah I could have worded that better.)
Dr.: Right, but even if it is related to EDS I wouldn't necessarily be the one to treat it, like I mentioned it's a connective tissue, the primary issue is a connective tissue disorder.
Me: Which effects everything in your body. It effects you neurologically , spinally, it effects your connective tissue, your nerves, it effects your cognitive abilities, it effects everything, everything.
Dr.: Right, so, but that's my opinion, I mean you're free to have another opinion from a neurologist but that's my take.
Me: But none of, I have been with three neurologists and no neurologist wants to learn.
Dr.: Okay, so I mean there's your answer.
Me: But why don't you guys want to learn I don't get it.
Dr.: Because we're neurologists, I told you we don't treat that. I mean this is the third time you've seen a neurologist. (Great excuse doc, sheesh.)
Me: But that's neurological manifestations (pointing to the title of the research paper I was taking out.)
Dr.: So, anything can be a neurological manifestation.
Me: But, if you're a neurologist,
Dr.: Because that's my option, that I don't want to treat it.
Dr.: I don't want to treat EDS related,
Me: So i'm just not your group of interest?
Dr.: Well it's just that we as neurologists don't treat things that are a not primary neurologic issue.
Me: But it's a primary neurologic issue for me, and I am the patient,
Me: And this is my problem, it is a neurological manifestation that you are not interested in, so it tells me that you are not interested in me as a patient. Do you see what I'm saying?
Dr.: That's not what it is.
Me: What is it then? I mean I'm open to discussion.
Dr.: I mean I'm telling you that I think all of your constitutional symptoms, the pain these neurologic issues are a result of the connective tissue disorder, not necessarily a primary neurologic issue, and we as neurologists treat primary neurologic issues. I think your rheumatologist should treat the underlying cause of it, EDS.
Me: It is multisystemic.
Me: So why do you not want to learn about the neurological aspect of it so that we can treat it from a neurological standpoint?
Dr.: But I'm telling you, I mean you can leave that with me (the research publication), I can read it, but as far as my recommendations today is kind of what I told you. I mean if it makes you happy I'll read it.
Me: I just don't understand, I guess I just don't understand when you have a patient that present itself with something out of the ordinary in your field why no one wants to learn, read and help.
Dr.: Well it's out of the scope of my practice.
Me: How do you know?
Dr.: Because that's out of the scope of my practice, and so I'm going to have to take this to the nurses outside.
Dr.: Then they'll give you a printout from today's visit with my recommendations, and if you have any questions, you can feel free to call our office. (I heard office, just not me. He handed me a slip of paper and disappeared so fast out the door that he left it open.)
And then he walked out. Seriously, that's where the recording ended. I gathered my belongings, and walked out the open door and made my way out to a nurses station of nurses helping other patients. I waited a few moments and then approached a nurse who was at least not with a patient and asked if they needed me for anything else.
Who knew all I needed was some duct tape, stretching and heating pads to fix up this pesky connective tissue disorder! Thanks doc! Notice we never made it back around to my migraines, a "primary neurologic condition."
If you made it this far, thank you! Leave any thoughts below. My intention is in no way to demean physicians. It is just a personal experience.