Neuro and Gastro
This past Monday we made the long drive to partner’s neurologist. This coming Monday we stay within county for the considerably shorter drive to the gastroenterologist. And I have crowned myself Memo Queen. (I posted my memo to the neuro, faxed in advance of our appointment, in this entry.)
Two days prior to the neuro appointment, partner was ready to cancel because she wanted to see the gastro right away. (She had already made the appointment to see him this coming Monday.) I asked if she had any pain; she said no. She just wanted answers and she wanted to tell the gastro about her “Roux-en-Y gastric bypass,” for which there is no evidence in her medical record. (She “sees scars” in the photos from last month’s endoscopy.)
I spent the weekend pretty much living moment to moment and responding to her pronouncements with, “Hmm.” (And biting my tongue, and taking deep breaths.)
She had calmed down by Monday, but she still called the gastro office — right when we had to leave for the 75-mile drive to the neuro. She had questions about a procedure done when she was hospitalized in 2009 for a bowel obstruction and in which the gastro had not been involved.
I immediately suggested that I could deliver those hospital records to him. Partner liked that idea — and I cheered inside because I planned to include a few additional documents. But that would have to wait until after the neuro.
We had great weather on the drive down (yay!), which decreased partner’s agitation considerably. Great weather on the return drive, too, and no bathroom emergencies! Double-yay!
Partner regaled neuro with her Roux-en-Y theory. From the transcript:
Partner: The Wikipedia printout of gastric surgery, gastric bypass surgery, has it on, has a list there of the deficiencies that that often produces. And I was going to ask you what’s a good amount of iron to target for?
Neuro: Why don’t you just check your iron level?
Partner: I can’t check my iron level.
Neuro: Well, I can order it and then you can go get it done.
Partner: Okay. Um, I didn’t know if being on estrogen made the recommendation different. I saw statements that, um, gastric bypass normal women have X-amount, but if there is pregnancy, then it’s another amount, higher. I don’t know if the estrogen put me in the category of pseudo-pregnant enough to make the iron, uh, turn out faster, and therefore I should toss it in my body faster. Um, if –
Neuro: [inaudible] find out.
Partner: Quicker flow-through, I suppose, is another way of putting it. So iron –
Neuro: Are you talking about gastric bypass?
Ejourneys: There’s nothing in the medical record pointing to that.
Partner: I haven’t — I saw Roux-en-Y appendix bearing, it’s a really long record. It’s only a few words [inaudible].
Ejourneys: Are you talking about Wikipedia?
Partner: No, I’m talking about my medical records.
Neuro: You had a gastric bypass?
Partner: I’m coming to believe that.
Ejourneys: I have not seen this.
Partner: It wasn’t a choice of mine.
Ejourneys: She has an appointment with the gastroenterologist next Monday.
Neuro: Okay. Are you thinking you have that because of what reason?
Partner: Of the ones that are listed in Wikipedia, the — the heartburn is the one that matches. And I had told the therapist I had been talking to, prior to this  hospitalization. [Note: heartburn is a symptom of gastroparesis, which the gastroenterologist told us might be a factor.]
Neuro: Who’s the GI person you’re going to see?
Ejourneys: [Gives name of gastro] –
Partner: [Upset that I've spoken up] Excuse me! Yes, [gives name of gastro].
Neuro: And, uh, you care about this for what reason?
Partner: Um, I believe if I remediate nutrients to allow that — that they’re actually drained about, then I will have a better activity level and a better life.
Neuro: Why don’t you just check for those nutrients in the blood?
Partner: I won’t know how much amount per day to put into — to make it go up. You would have –
Neuro: Based on the level, ask me and I’ll tell you.
Partner: Level of the readout of the test, or –
Neuro: Uh huh.
Partner: Then I’d have to come back with the test results.
Neuro: Well, if you go get the test with my name on it, they’ll send me the test results –
Neuro: And we can telephone you.
The discussion turned to nutrients and to what my partner was currently taking. I was concerned that she was resuming B-complex vitamins after the neuro had advised against them. Partner was mainly concerned about getting enough thiamine (neuro told her the pharmacist could probably supply thiamine-only pills if they’re not on the shelves; he also said a thiamine deficiency was highly unlikely). Neuro clarified that his main objection to the B-complex was that B-6 in particular can cause problems. Partner talked about prenatal vitamins, and on and on. Neuro gave us a requisition for bloodwork to check on levels of iron, thiamine, copper, and zinc. He also checked partner’s gait and neurological responses, which were basically unchanged.
More from the transcript:
Neuro: Okay. So what can I do for you today?
Partner: Um –
Neuro: Besides check your thiamine, check your iron profile?
Partner: Uh, those two bottles are also in the car. The ones that say barium. I believe there was a test, uh, the time when I had a throat blockage. A gastrointestinal blockage. And there was a, on the screen that I saw, that [ejourneys] did not see, that showed a stomach outline, like a silhouette, but it was all black. The rest of the gastrointestinal tract was not black. Just the stomach. I didn’t understand what it meant at the time. Um, but I did notice that the bottles had a standard graphic of the GI tract with not the stomach being a different color. I suppose the person is expected to say, “But mine turned out black. How come it’s not the same as on the bottle?” But I didn’t do that at the time. But I would now. And, uh, that’s something I would bring up with [the gastro]. In fact, before we left today, I called his office and said that I believed this test was done at the time of the GI blockage, and that the radiology person, I believe that would be in [our local hospital], would be where those records are. Um, I intend to call [the GP]. I don’t know, um, about, uh, protocol for releasing medical records, but in my talking to [gastro], to [gastro's] office, I said that he had my permission to find that information about the, uh, what I saw on the screen during the hospitalization for the blockage. Um, the — did it happen, did it not happen, has been a contention of understanding between me and [ejourneys]. And I think it would be less tension if it were settled. Uh, [ejourneys] said in the car, driving down, that she would be okay about it if she heard from [gastro] that, yep, that did happen.
Ejourneys: Basically, if [gastro] says that yes, [partner] had a gastric bypass, then I would believe him.
Partner: Is he the only person you would believe it from?
Ejourneys: If any qualified doctor said that that was the case. These are [partner's] notes on her suspicions about that. [Hands this to neuro.] And also, she had questions about, um, the X-rays taken of her brain in 1982. I’m going to pass that on to you as well.
Partner: I haven’t read these recently, so what does the gist of what it says?
Ejourneys: Well, you wanted to know if there was a way to find out the strength of the CT scans used in 1982, because –
Neuro: Probably point two, point five.
Ejourneys: [Partner] is ascertaining that the CT scans were stronger than usual, and –
Partner: More than enough –
Ejourneys: — constituted brain surgery on her.
Neuro: Now they didn’t even have MRI scans until around 1983 or 4.
Partner: It wasn’t MRI, it was CT scans. And I think the, uh, optical energy level was about 150 –
Neuro: I don’t know how you’d find that out.
Partner: Well, I think that [cognitive neuro] was trying to display that by showing the thinned corpus callosum.
Neuro: Um, really?
Partner: I think that the, um, and I was describing it as a tunnelized area down the length of the corpus callosum. Was, and explained it as a shunt to allow CSF fluid to move around in my brain and release pressure that otherwise would build up. Would build up. I’m willing to back off on finding the exact number. I’m believing that the corpus callosum doesn’t get that way without intervention. That people aren’t born that way, and, uh –
Neuro: Well, you could be born that way if you’re born with a brain injury. But based on your previous academic pattern and success, it’s unlikely this was congenital. Do you really care what I think?
Partner: Um, as I was starting to say, I was backing off on wanting to get the number, but wanting to have [ejourneys] and me on the same understanding about what happened. That would, I think, be a benefit.
Neuro: Mm hm.
Partner: I also know there’s something of a pattern of folie a deux, that I would — that’s only been something said by a — by a therapist. And I — I don’t know if it was mentioned, if that was in reference to me and [ejourneys] or me and my father. But I, looking back, can see it as a pattern in some other relationships. And, uh, now thinking of that, I can think of ways to break away from it.
Ejourneys: [Partner's] second therapist at [the mental health center] was ruling out — she had folie a deux up as a rule-out, and it was agreed that we did not have folie a deux. And my belief is that if [partner] and I were on the same page, we would have folie a deux.
Partner: That’s how it goes.
Neuro: Now it doesn’t talk about the CT scan.
Partner: Say again?
Neuro: It doesn’t cause, with the CT scan causing your problem.
Neuro: So, what can I do for you?
Partner: Is there a way to tell if [therapist #2] was talking about me and you or me and my father?
Ejourneys: It’s probably in her notes, which I have.
Partner: Um, and if there’s a — I think I might have found out about the Roux-en-Y if I’d known what questions to ask. Are there questions that I could ask, that I am not asking?
Neuro: No. I think you need some type of imaging study.
Partner: Okay. And so –
Neuro: If you want to know that question. If it’s worthwhile to look at.
He dictated his notes, copy to come to us. On transcribing, I noticed what I think is his first mention of ADEM. His notes from February read, “Presumed primary progressive MS dating back to the 1980s.” This time, he said, “She had hospitalization for encephalitis in 1982, but that may have been an acute attack of ADEM.”
This time I went to Wikipedia. ADEM (Acute disseminated encephalomyelitis) “is similar to multiple sclerosis, and is considered part of the Multiple sclerosis borderline.” It can arise from various viral infections, including the shingles my partner had experienced several months before her 1982 hospitalization. There is also disagreement as to whether ADEM is part of the MS spectrum or is a separate disease.
Regardless, neuro’s notes reinforced that her MRI scans are “consistent with MS” and that she “probably has” that disease. He also dictated, “She has a rich vocabulary but tends to talk in long, convoluted sentences, which, if they weren’t so slow, might be considered a flight of ideas…. there are some health issues and delusions.”
At the end of our appointment, neuro told me, “She’s lucky.”
“Thank you so much,” I said.
Partner chimed in, “I’m lucky, too.”
Above: the barium bottle my partner’s saved for years.
After we got home that evening, I printed out the records from my partner’s 2009 hospitalization for bowel obstruction and put together a package for the gastroenterologist. From my cover memo:
[Partner] has expressed a belief that she underwent “gastric bypass” in 1982, during her hospitalization…for what was termed “probable viral encephalitis” but that is now believed to have been the onset of her multiple sclerosis. [I had not yet noticed neuro's mention of ADEM here.] Damage from her MS is chiefly in her prefrontal cortex.
Please note that this damage from [partner's] MS affects her reasoning. The [hospital] records…do not include a gastric bypass (or any of several other surgeries she alleges). I can furnish the records…upon request.
Along with the records from [partner's] 2009 hospitalization, attached are the following:
1. [Partner's] POA, which names me as the holder. Please note that while I hold POA, I am not [partner's] legal guardian. [Partner] is still able to perform her ADLs.
2. Office notes dated February 11, 2013, by [partner's] neurologist…detailing her condition including her cognitive dysfunction.
3. Letter to [neurologist] from cognitive neurologist…, which also details [partner's] thought disorder.
4. Copy of [partner's] handwritten note from August 14, 2013, stating her nutritional concerns in light of her “bariatric” condition. The note also mentions “appendectomy.” To my knowledge, no appendectomy on her had been performed.
I can also furnish reports provided by mental health professionals to you upon request.
Please contact me if you have any questions. Thank you.
I delivered my package to the gastro on Tuesday. The gastro called on Thursday, while my partner slept (a stroke of luck there), and let me know that he had read the materials. That made my day! I wrote in my list of positives for Thursday that he gets TWO gold stars — one for reading the materials ahead of our appointment and the other for calling, to let me know he read them.
To be continued…
- Advocating For Myself (caregiving.com)
- Slices of Life (caregiving.com)
- Cocooning (caregiving.com)
- Now Available: Caregiving in Five Lines by Ejourneys (caregiving.com)
- What’s Your Six-Word Story About Your Last Tempter Tantrum? (caregiving.com)
- Tell Us: In Social Settings, Do You Say, “I Care for…” (caregiving.com)