broken three

I drop the fragment of rock with the seam a second time. Now I have three pieces. I stop there. When I climb back up the bank, I have an oxygen tank, a camera and rocks. It involves quite a bit of swearing and stopping to rest while I try to get enough oxygen.

Hopefully I will get better. I don’t know when or even if. My friend B says he wants to know what the pneumonia was, that triggered this round of pseudoautoimmune misery. I shrug. “We know some things it isn’t.” I say. “It isn’t covid-19, it isn’t influenza A or B, it isn’t respiratory syncytial virus, it probably is not strep A though I still haven’t had the second blood test. It isn’t pneumococcal pneumonia. It could have been mycoplasma pneumonia or pertussis or a very long list of viruses. Doctors are practical scientists, at least, I am. If the patient is getting better, don’t chase an answer that won’t add anything. I caught something, probably in the clinics where people kept taking off their masks when they were ‘alone’ in the room. They didn’t realize that they were breathing out viruses or bacteria that could take me out.” We aren’t exactly sure if the combined penicillin and clindamycin, high dose, helped or not. I think it did, but stress makes this worse too and it was a very very stressful time. Mean people, you know, and mean family. I just don’t understand what they are thinking.

I really think that post covid-19, we should wear a mask if we go out in public when we are sick. Because you don’t know which people are the vulnerable ones. I normally have lots of energy and I don’t think people would guess that I have had chronic fatigue and that I am terribly vulnerable to infection. In the clinic I owned, after I was sick in 2014, I asked any patient who was sniffling or coughing to wear a mask. “I get pneumonia easily,” I would explain. They had the right to refuse and then I would not see them. After I closed my clinic and went to work as a temp doc, I could not protect myself. I asked the nurses to ask people to PLEASE keep their masks on, but people are people. They didn’t. I had a bit of a PTSD reaction every time I walked into a patient room and they had masks off. I wanted to run out of the room screaming but I was more restrained and just said, “Please, please, PLEASE put your mask back on, other people have been in the room.” I didn’t add “And you might kill me.” because I only had 20 minutes for the visit…..

The pieces of rock are beautiful, aren’t they?

Here is a great song. Got it from this blog: https://reflectionsofanuntidymind.blog/2021/05/07/icky/

This is all for the Ragtag Daily Prompt: workshop. I like working with rocks. I have to decide what work to do next, since it’s no longer safe for me to do family medicine. It SUCKS. I really miss my peeps.

I have to get well first. If I do, what next?

broken two

I pick the rock up and drop it on another rock. Inside there is a vein of quartz. And what looks like a heart, made of quartz. Beautiful. I hope the rock does not mind being broken. I am questioning myself. The rock would break eventually but I have speeded that up. Sometimes we do some really questionable things out of curiosity.

The rock did not break along the seam that I expected it to. There is still that seam. Should I drop it again?

For the Ragtag Daily Prompt: workshop.

broken 1

I was playing along a stream on Tuesday. It was darn hard to climb down to with my oxygen tank and camera. It made me very short of breath. But I love water and running water is joyous.

I was picking up rocks and looking at rocks. This rock really interested me. Look at all the cracks. When the river is higher it would wear the rock down. In the winter the cracks might freeze. I thought this rock might be ready to break. What is inside?

This is for the Ragtag Daily Prompt: workshop.

chronic fatigue

I am realizing that I have had chronic fatigue since 2014. Or possibly 2012.

We know that chronic fatigue can be kicked off by infection. One in ten people with a severe infection is diagnosed with chronic fatigue. Severe stress can also kick it into gear or a combination of stress or grief or attack or assault and infection can kick it in to gear.

We don’t really understand it, though I am finding experience to be a very great teacher.

As far back as medical school and residency, I was curious about it. I love the edges of things: it is the things that we don’t understand that I study. I pick up bits of information like a crow or magpie. I add it to the pile of things related to it in my brain. Sometimes I will add just one more small piece and the entire pile of puzzle pieces with suddenly, in just a blink, rearrange itself into a picture.

The pieces won’t arrange themselves until I have a complete picture. Or, well, until something in my brain is satisfied that it is complete enough. Since nothing is every complete or completely understood, is it? Nothing fixed and we make up all the words.

Anyhow, chronic fatigue would explain why running my own clinic, I did not see more than ten patients a day. Also I do have some OCD, hidden under a messy packrat gene. You would NOT look at my house two months ago and think that I have some OCD. Messy and chaotic. But I am a precision demon about patient charts and I am always thorough. In 2009 our local hospital let me know that my reputation was of a brilliant diagnostician. Ironically, this was right before they fired me for arguing about the patient quota of 18 per day. I ran late because I could not stop being thorough. I cut my work from 4 days a week to 3.5 but that was still two hours of dictating and paperwork for every day of clinic. So clinic was 28 hours plus the dictating and paperwork and calling specialists and calling insurance and a one hour meeting at lunch with the administration EVERY DAY FOR MONTHS, so really clinic was 8 hours of patient contact plus the one hour lunch meeting. Redo the math: 28 hours plus 4 one hour lunch meetings plus 7 hours of the generated deal with stuff AND do not forget about call nights. 39 hours plus call. At least one call night a week, 6 pm to 8 am, so that is 51 hours or more. I felt that I was working flat out as fast as I could every single day in clinic and I still was not keeping up.

I also really really resented the one hour lunch meetings because I was only allowed 20 minutes for a patient and was to see them “for one thing”. Seeing people “for one thing” is unethical and dangerous because for example: a diabetic with a toe infection. That is already two things. But you’d better calculate the third: kidney function, because you have to dose the antibiotic for the toe based on the kidney function, and diabetes is the number one cause of adult kidney failure in the US. Oh, and you’d better check on the diabetes too, because if their blood sugar is whomping out of control, the toe won’t heal and that’s how they got infected in the first place. So I might have ranted a bit about seeing people “for one thing” because I think it is an UNETHICAL DANGEROUS LOAD OF CRAP. DO NOT PUT UP WITH IT, DOCTORS AND PATIENTS OF THE UNITED STATES. It is corporate trying to maximize profit and they can frankly go to hell and stay there. Single payer. ‘Nuf said.

Even more ironically is that two years after they fired me for vocally disagreeing with the quota (I would add that I was not diplomatic and I was vociferous), the hospital dropped the quota down. To what I had asked for, 16 patients a day. I actually had kept track through my career and knew that I averaged 16 patients a day. One partner usually saw 20 or 21, but the problem was that he kept the chart in his head. When I would get one of his patients, I’d have to say, “Um, you have some heart disease, right? You’ve had a heart attack or a bypass? What year was the bypass? How many vessels?” I’d be guessing from the medicines and clues… but the past history was not entered into the chart. So, yeah, I only saw 16 patients a day but my charts were solid and thorough and the charts on his patients were a lot more comprehensible every time I saw one of his patients and did the chart for him. He owes me. Pay up.

Anyhow, I have worked really hard for the last seven years, in spite of some chronic fatigue and fibromyalgia. Which I rather refused to admit to myself. I thought I was “well”. I felt bad that I didn’t clean up my chaotic house.

Now I forgive myself for the house. Because the truth is I couldn’t clean up the house. Not after 7-10 patients and running my own clinic, CEO, chief cook and bottle washer, dealing with the covid changes, trying to figure out medicare’s arcane language, fielding malpractice insurance, business insurance, insurance insurance and phone company scam calls.

I have been sick at home for 6 weeks. I have been on oxygen for 4 days? 5 days? I would have felt a lot better and been able to think better if I had been on oxygen the whole time. Meanwhile, turns out I CAN clean up and organize in spite of being hypoxic. My house is now a very different place and the garden has changed enormously very quickly.

I am sending more money to India, via https://www.pratham.org/ . I can hardly bear to think about the people who cannot get oxygen. It feels terrible and terrifying to not be able to breathe. My chest hurt and lungs and heart when I even sat up, much less walked. If I walked slowly enough, it was bearable, just barely. I walked anyhow. Those edges, I am always there.

It is very weird being on oxygen. I have told people in the past when I had pneumonia. I’ve almost died from it four times. Heart rate of 135 holding oxygen level, but it doesn’t feel good. I am confident that I do not have coronary artery disease, because if I did, I would have had a heart attack the first week. A heart rate of 135 is running a marathon. It is exhausting. Right now on oxygen, my heart rate is 86 and oxygen at 98%. My normal heart rate is more like low 70s. Normal is 60-100, you knew that, right?

It is very weird being on oxygen. Because now I have a visible signal that I have been/am sick. Somehow this is making people more kind, more concerned. I keep thinking, but I told you I was ill before. Why does being on oxygen make people kinder?

I think that is the difference between having an illness where there is not much comprehension and one that we think we understand. So chronic fatigue and fibromyalgia are dismissed, disrespected and discriminated against, while cancer and sepsis and covid-19 and massive trauma in the military are supported. People send gifts.

In the past, tuberculosis was thought to be an illness of sensitive poets. Then the tuberculosis bacillius was discovered and it morphed into a disease of the poor dirty overcrowded low scum of humanity. My mother had tuberculosis, but luckily it was when we’d moved on to sanitoriums, because it is airborne, so stop the spread and take care of people. There was also medicine. My mother had to take 36 pills a day. At one point in the hospital, someone brought her a medicine.

“What is it?” asked my mother.

“Don’t worry about it.” said the nurse.

“No,” said my mother. “I want to know what it is.”

The nurse got the doctor. He came in and said, “Take the pill.”

“What is it?” said my mother. She was 22, 8 months pregnant, very poor, and a student at the University of Tennessee.

“Don’t worry about it.” said the doctor.

My mother threw it at his head. Because not only was she 22, 8 months pregnant, very poor and a student at the University of Tennessee, but she was also the daughter of F. Temple Burling MD, a psychiatrist, physician and professor at Cornell University.

And he had told her, don’t take anything unless you know what it is…..


________________________________________________________________

The picture is of my mother, Helen Burling Ottaway, in 1945. Helen Temple Burling II at the time of the picture.

________________________________________________________________

I think the final straw that made the hospital fire me was me singing “The 18 Patient Blues” which I’d made up, to the tune of 16 Tons, into the Chief Financial Officer’s voicemail and at the open mike at the Upstage, here in town. I admit, it was not diplomatic.

broken

I wrote this poem in 2014. Sometimes you know things without knowing them. Or you know them before you are ready to know them and so…. you forget.

broken

I think you said
“Break her.”

And you told them how.

You told them my weaknesses
and my strengths.

You told them that I twisted your words.

You said, “You twist my words.”
K said, “You twist my words.”
S said, “You twist my words.”
Ko said, “You twist my words.”

and on everything2
they, too, twist my words.

Twist
twisted
fisted.

When the outer is charming and perfect
the damage is inside.

I wear my spikes on the outside.


No one, to date, has been allowed more then
visitation rights
inside.

No one except
you
and my children
and all children.

Only they are allowed inside.

Twist
twisted
fisted.

I am broken.

But I was always broken and knew it.

I hope that no one cut their hands
when they tried to smash me.

Pretty on the outside
deadly on the inside.

Yet I think a spark in you said,
“Break her.”

What you didn’t tell them
is that I don’t bother to lie
because no one listens anyhow
no one ever listened
and so I can always tell the truth
until they stop listening.

because they don’t believe me

but you knew

I tell the truth

And I was already broken.

8/22/14

And this should connect to this: https://drkottaway.com/2014/11/

Tired

Yes, so the picture is me during Family Practice residency at OHSU. Also a friend, visiting, a fellow graduate from Medical College of Virginia. She looks alive. This pneumonia is making me feel like that picture. I started internship and residency with a six month old. We would wait until 9 pm for his bedtime or sometimes he wouldn’t see me.

One night I was trying to give him a bath, after a day and a night and most of another day on the obstetrics rotation. I had to call my husband to come help, because I could not stay awake by the bathtub. Safety first.

When I had a really bad call night and then ran around the next day trying to get everything done so I could GO HOME, I could not stay awake until my son’s bedtime. So he would put me to bed. By age two he would tuck me in and babble a story and dad would turn out the light…..

I would come home from the day and a half working, just exhausted and my son would be doing something new. “When did he learn to CRAWL!!?!” I would say.

“Oh, is he crawling?” my husband would say. “I don’t know. Didn’t notice.”

RRRRrrrrrr.

When my son started two word sentences around age two, we would ask him questions. “Where does T live?”

“Pink house.”

“Where does daddy live?”

“Pink house.”

“Where does mommy live?”

“Hospital.”

I went and had a tantrum at my residency director. I was so mad at the faculty. My son thought I lived at the hospital. He was right, too. I was pissed and stomped around like a honey badger, wanting a cobra to fight. The faculty ducked into closets and bathrooms…… I gave them hell.

My kids are doing well in spite of mom living in the hospital. Though they acted out some, as normal kids do. A few years ago I asked my daughter, “Where are the barbies?”

“Hmmm.” she said.

I eyed her. That noncommital noise gets my attention.

She shrugs. “Ok, well. T and his friends and I blew them up with firecrackers. In the driveway. When you weren’t home.”

“Hmmm,” I said.

“We did not blow up the Get Real Girl because we knew that would piss you off.”

“Mmmm-hmmm.” Yes, it would.

So I wonder…. what else were they up to? How did the ceiling tiles get broken in the finished basement? There are various other mysteries…. if the house could talk, it would tell me.

The barbies came up a few days ago. “Didn’t you blow up any action figures? Aka Boy Dolls?”

“No.” said my daughter.

“That’s kind of sexist.” I said.

“Hmmm.” she said. And my son just laughed.




myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

Pandas and the toughest yarn

After my sister died, I eventually got a box from her home.

People were cleaning it out. My cousin Ko, my friend Caroline, other friends.

Among other things, they sent part of her yarn stash.

What they sent me was the very very fine yarn and the fuzzy yarn. The mohair.

Oh gosh, I thought, they sent me the toughest yarn.

Well, as part of the dealing with the ADHD/OCD antibody annoyance, which makes me wired while the OTHER antibodies make me physically not able to do much, what am I doing?

Sorting my yarn stash, for one. I have a LOT of that lovely fuzzy soft superfine mohair and other superfine yarns. It is tricky to work with because the fine needles are hard on the hands and because if you screw up, it’s hard to take it out. I know some of the tricks: freezing the sweater is one. It makes it easier for the fibers to untangle.

I’ve also been sorting the knitting books and magazines. I have more books. My mother gave me a whole hardcover book on edges and casting on. I’ve used it twice so far. But now I am home, buzzing with antibodies (yeah, sometimes it feels like ants or bees or pins. On the inside.) and so: knit.

And lo, I find this book. Fine knitting. It even has a mohair t-shirt pattern! Awesome, I am going to be knitting up some of my sister’s mohair. Wonderful. I think she’d approve. Also, I plan to be just as glam and sultry as the woman on the cover, heh.

I think I’ll submit this to the Ragtag Daily Prompt: Country Comfort.

Covid 19 long term and PANDAS

It is not looking like I will be able to return to medicine. Based on the current research, the PANDAS reaction will get worse with each infection. I will be moving in to a hamster ball next week, (*&^*&(*&*&^.

You, gentle reader, can work your way through the research, which I am going to present to you. You have no reason to do this unless you have chronic fatigue, fibromyalgia or myalgic encephalopathy or post covid syndrome. Or you know someone with one of those. I think there are a few people out there.

First, read the guidelines for treating PANS/PANDAS.

https://www.pandasppn.org/guidelines/
https://www.pandasppn.org/jcap2017/

The article about the three antibodies involved is in this section:
https://www.liebertpub.com/doi/full/10.1089/cap.2016.0148

“Evidence for group A Streptococcus (GAS)-specific cross-reactive antibodies having affinity for neuronal components (including receptors) in the basal ganglia has been demonstrated in human and animal studies (Husby et al. 1976; Kirvan et al. 2003, 2006a, 2006b, 2007; Hoffman et al. 2004; Yaddanapudi et al. 2010; Brimberg et al. 2012; Lotan et al. 2014). Sera and immunoglobulin G (IgG) from SC and PANDAS patients known to bind to components of the GAS cell wall have also been shown to cross-react with components of neurons in the basal ganglia caudate, putamen, and internal segment of the globus pallidus (Kirvan et al. 2006b). Antineuronal IgG antibodies binding to multiple targets, including lysoganglioside, tubulin, and dopamine receptors, have been reported to be elevated in patients with SC and PANDAS compared to controls (Kirvan et al. 2003, 2006a, 2006b, 2007; Cox et al. 2013, 2015). Targeting of such antibodies to dopaminergic neurons in the substantia nigra and ventral tegmental area in the basal ganglia (as well as other cortical neurons) was confirmed in transgenic mice expressing a chimeric antineuronal autoantibody containing VH±VL regions cloned from a patient with SC (Cox et al. 2013).”

All right, three antibodies. So WHAT, doctor?

The antibodies are to dopamine, tubulin and lysoganglioside.

Here is an article looking at chronic lyme disease.

https://www.sciencedirect.com/science/article/pii/S2666354619300158

Basically that article looks at four groups. No lyme disease, one episode, more than one and chronic. No dopamine antibodies. But the tubulin and lysoganglioside antibodies are not present in the healthy folks and are present in the lyme folks, highest in the chronic lyme. Those two antibodies are associated with chronic fatigue (the tubulin) and fibromyalgia/gluten and sugar intolerance (the lysoganglioside).

Now wrap your head around that one in ten severe infections can trigger chronic fatigue. ANY INFECTION. I am normal, I just bloody well got antibodies early because my mother had tuberculosis through the whole pregnancy. So I was born with PANS. Then, smartied that I am, I chose to be a physician, meaning I get exposed to infections. Guess I am not going to be doing Doctors Without Borders, right?

Treatment, well, that is complicated. I think it depends on the person’s profile: which antibody is giving them the most trouble. I am a special case, because I have all of the antibodies firing full bore at once. Which has forced me to be extremely creative about how to survive this now and in the past.

First off for the treatment: DO NOT PUSH THE CHRONIC FATIGUE. Because the tubulin is damaging not just skeletal muscles but the heart muscle as well. So even with squeaky clean coronary arteries, pushing through the chronic fatigue could trigger a heart attack or broken heart syndrome. And we aren’t (yet) measuring these antibodies routinely. Hell, I hadn’t heard of tubulin since the distant mists of college until 2 weeks ago.

Secondly: if there are neurological symptoms, that is, any two or more of manic/word finding difficulty/ADHD/OCD/emotional lability/oppositional defiance/clingy/brain fog/yeah I forget the rest, then the anti-dopamine antibodies are present. In addition to speeding the thoughts, I think that they speed cell metabolism. I always drop ten pounds the first week. So, vitamins are vital. If your vitamin K drops, you may clot. Also vitamin D for teeth and vitamin B12 — if it’s low you can get Guillain Barre. The myelin sheaths unwind. Ok, that could also be thiamine or folate or all three. Bleeding strokes from low vitamin K.

Third: I don’t know if it’s just me, but the things I have to change in my diet are NO SUGAR and NO GLUTEN. I tried rice yesterday and it was ok, so I think it’s gluten and not just all bread/rice/potatoes/pasta. I have mostly been eating meat or cheese with kale/collards/mustard greens/parsley or turnip greens. All of which are vitamin rich. I have not had bread in three weeks and have been not even eating much fruit. Blueberries and grapefruit are safest. In two of my bouts of this, with strep A pneumonia, I would have fluid shifts when I ate sugar or gluten. Normal urine output is up to 2 liters. I had 10. That was documented in a 24 hour inpatient observation, though the doc did not actually notice. I did. I also figured out how to get it to stop, by stopping carbohydrates as much as possible. Greens only, because they are food sources of vitamin K. At any rate, it’s worth a try for other people. I use electrolyte tabs with fluids too, NUNN tabs or Airborne.

There’s other stuff. But I am tired and my chest hurts. Take care of yourself and each other.

Illness Anxiety Disorder

“Please write something from a medical perspective about anxious people who worry every little thing is some serious disease.” — reQuest 2018

This is quite a brilliant and timely question.

Here: https://www.anxiety.org/hypochondriasis-replaced-by-two-new-disorders-in-dsm-5.

The DSM V was published on May 18, 2013. This is the Diagnostic and Statistical Manual of Mental Disorders version 5,  and it redefines various disorders. For example, opiate dependence has disappeared and so has opiate addiction. Instead, there is one diagnosis: opiate overuse syndrome. Which really combines both opiate addiction and opiate dependence and makes it a spectrum.

The DSM V drops hypochondriasis. Wait, you say, that diagnosis no longer exists? Well, yes, correct. So the diagnoses are made up? Yes, as my daughter says, “All the words are made up.” So psychiatry changes and the diagnosis definitions change and some diagnoses disappear. Medicine is like the Oregon Dunes, really. The information is changing daily. I went into medicine thinking it is like a cookbook, where I just have to learn all the recipes. Nope, sand dunes: the wind and waves and new information change the contours daily. It drives my patients nuts. “My insurance won’t cover the medicine I’ve been on for 26 years.” Um, yeah, sorry, work for single payer and shut down the insurance companies, ok? “This combination of medicines has never killed me yet.” Um, yeah, sorry, but you are in fact getting older and we no longer think that combination is safe and first do no harm: I can’t prescribe combinations that I think may kill you.

Hypochondriasis has been replaced by two diagnoses: Somatic Symptom Disorder and Illness Anxiety Disorder.

From the Mayo Clinic website: https://www.mayoclinic.org/medical-professionals/clinical-updates/psychiatry-psychology/diagnostic-statistical-manual-mental-disorders-redefines-hypochondriasis.

“Patients with illness anxiety disorder may or may not have a medical condition but have heightened bodily sensations, are intensely anxious about the possibility of an undiagnosed illness, or devote excessive time and energy to health concerns, often obsessively researching them. Like people with somatic symptom disorder, they are not easily reassured. Illness anxiety disorder can cause considerable distress and life disruption, even at moderate levels.”

“To meet the criteria for somatic symptom disorder, patients must have one or more chronic somatic symptoms about which they are excessively concerned, preoccupied or fearful. These fears and behaviors cause significant distress and dysfunction, and although patients may make frequent use of health care services, they are rarely reassured and often feel their medical care has been inadequate.”

So, subtle difference. Broadly, the illness anxiety disorder people are sure they have SOMETHING and are worried about ALL THE SYMPTOMS. The somatic symptom disorder people are worried about A SPECIFIC SYMPTOM OR SYMPTOMS and WHY HAVEN’T YOU FIXED ME.

Some of the people complaining of weird symptoms do have a medical diagnosis that has not been sorted out. Take multiple sclerosis for example. The average time from the start of symptoms to diagnosis is 4-5 years.

Here: http://biketxh.nationalmssociety.org/site/DocServer/Facts-about-MS.pdf?docID=54383).

Also here: https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools.

Another one is sarcoidosis: https://www.mayoclinic.org/diseases-conditions/sarcoidosis/symptoms-causes/syc-20350358. It’s hard to diagnose, can affect different parts of the body, and it’s still pretty mysterious. Add to that list chronic fatigue, fibromyalgia, chronic pain, and numerous other diagnoses.

With multiple sclerosis, you may be thinking, well, if they had just done the brain MRI sooner, the diagnosis would be made. Not necessarily. I did find a patient with a bunch of MS brain lesions: made the diagnosis. She had had a brain MRI 3-5 years before because of suspicious symptoms during pregnancy. At that time her MRI was entirely normal.

The DSM V does not have a diagnosis called psychophysiological disorder. This is an ongoing discussion:
1. https://pdfs.semanticscholar.org/7f7f/21a9b524fb677d575428bea11aab4c8d70c5.pdf
2. https://thoughtbroadcast.com/2011/01/21/psychosomatic-illness-and-the-dsm-5/
This site: http://www.stressillness.com/ is my current favorite about psychophysiological disorders. I heard a lecture from the physician who runs the site. He is at OHSU in Portland and gets the gastrointestinal patients where “they can’t find anything wrong” from all over the state. He is really good at this. He and I are in agreement: the symptoms are real. However, the symptoms may come from emotional suffering and from emotional trauma in the past and present.

It is clear that fibromyalgia is a “real” disorder: functional MRI of the brain shows the pain centers lighting up more with a standardized pain stimulus than “normal” patients. PTSD is “real”. It is interesting that there is more stigma surrounding fibromyalgia and chronic fatigue than PTSD: is that because the former two are more often diagnosed in women, and the latter is legitimate (finally) for male (and a smaller number of female) veterans?

And what do I, your humble country doctor, think? I think that chronic fatigue and PTSD and fibromyalgia and illness anxiety disorder and the others all may be variations of the same thing. Our body will handle and “store” or “stuff” emotions that we cannot handle or are not in a safe situation to handle it. Eventually our body decides that we are now safe enough and will notify us that we have to handle the emotions. Currently our culture is terribly unsupportive of this and there is huge stigma attached to dealing with it. We are all supposed to just be nice.

In the end, we can’t judge how a friend feels or whether they are well or not. We have to treat them with respect and kindness.

The photograph is me on my grandfather’s lap. He became a psychiatrist and I am a family physician. Taken in 1962 or 3. We are at cabins in Ontario, Canada. What a pair of grubs, but happy…..