I have what turned out to be post Covid ME/CFS and started looking for answers back in 2020; if only took 4 1/2 years for a diagnosis. Most of my doctors were more puzzled than dismissive ( except for the first cardiologist I saw)
My comment, however is about what my late mother endured when she became pregnant with me, her third child, at the age of 40. This was in 1958 here in California. Once I learned about it, I understood why she never trusted doctors.
First I was “menopause.”
She went back when she could feel the baby bump herself.
I was then declared a “tumor.” Fortunately she didn’t proceed with arranging the recommended immediate hysterectomy.
When I started kicking, she went back to the same doc; she was told how very difficult it would be for a couple who already had two older children to raise a baby and offered first an ( illegal at the time) abortion, and when she refused, was told that there was a nice local family who wanted a baby…
I am not making this up!
Post partum, she developed what I now believe was ME/CFS and was unable to care for me. Fortunately I had an older sister who loved babies!
She struggled with her illness for the rest of her life. Everyone, except for my father, including doctors, just thought she had suddenly become lazy and crazy.
Things might not be perfect nowadays but they have come a very long way.
Wow!!! Thank you for sharing this story. I don’t even know where to start. Imagine if she had a hysterectomy with you in her uterus!! And then the audacity of telling people who to live their family life… you are right, I constantly feel we live in a fortunate time with advancement. But there are moments that take me back in time and make me disoriented where we are in progress. And unfortunately those moments are not uncommon. Hence why this newsletter 🫠
Yes, just imagine how it might have gone had my mother not been an assertive college graduate Army veteran married to a respected skilled tradesman living in an affluent coastal community! If they tried this with her, who knows what went on!! My sister said she’d never forget her terrified expression when she got back into the car and announced that she had a tumor. After the initial shock, she reassessed the doctor’s findings for herself.
He continued as a highly regarded physician for many years after that but my mom always referred to him as a “paternalistic quack”!🦆
I have Primary Carnitine Deficiency, a rare metabolic disorder that straddles the line between muscular dystrophy, fatty oxidation disorder, and mitochondrial disorder. Beginning in childhood, I was small and clumsy and had severe muscle pain that was dismissed as growing pains, and chronic digestive issues. I had my first child at 24; she was born at 34 weeks, and became severely ill at 12 weeks old with congestive heart failure. Despite all efforts to save her, she died at 17 weeks old. The autopsy results showed that her cause of death was heart failure due to Primary Carnitine Deficiency. A month later, I had a muscle biopsy that revealed that I, too, had the same condition. I was lucky that I was still alive without intervention.
For several years, I was being treated by a wonderful physician at an academic institution who was highly respected and very knowledgeable. The symptoms that I struggled with since childhood were finally being managed and I was receiving supplemental prescription carnitine.
When my physician retired from clinical practice, my care was transferred to a pair of specialist physicians. These physicians brought me in for an appointment to tell me that they reviewed my records and decided that I didn’t have Primary Carnitine Deficiency, and that I was being discharged from the practice. Suddenly, I was without any further treatment for a diagnosis that I knew could become fatal, and my medical records now had incorrect information about my medical diagnosis.
Thankfully, my primary care physician stepped up to help me by providing the prescription medication that I needed. It took more than a year to find another specialist who could take over my care. I had to get my diagnosing physician to write a letter to the academic institution to fix the incorrect information in my medical records. All this because 2 physicians who NEVER MET ME, but read my medical records, decided that my diagnosis wasn’t accurate.
Wow!! Thank you so much for sharing. Mad respect to the primary care physician (proudly one of us!) who stood up for you! And shame on those who literally dismissed you.
I can’t believe I didn’t share this story with you yet. When I was 14 my ears were suddenly stuffy and I had a lot of ringing noise. I had had a cold and missed a week of school because I didn’t like school that year. I never had a fever or anything serious. The second day after I went back I remember not being able to hear my English teacher at all as she came to each desk to whisper something to us. The cafeteria noise was muffled.
Saw my pediatrician where I couldn’t hear any of the “hear the beep, raise your hand” test. Then saw a chiropractor to try to “push fluid from my ear canals,” and then finally saw an audiologist and ENT. I could hear the beeps on the audiologist’s test a little better and I think she was able to talk to me through the headset when I was in the sound proof testing booth.
I learned years later that the ENT told my parents “sometimes children this age pretend things to get attention,” but the audiologist stood up for me and said there was no way was I faking. The ENT had never seen a case of sudden hearing loss affect both ears simultaneously. I kept going to that office because he was the only ENT in my town. He never had much to say at my frequent visits but the audiologist and I became friends.
This was 1993 and before the internet. Nowadays you can google and find information about sudden sensorineural hearing loss which tells you it should be treated as an emergency. We assume it was a virus that caused mine.
I used to have a neighbor friend whose daughter lost her hearing after a fever (before I met the mother, and she was an adult on her own by then so I don't know how her drs viewed it.) I've noticed a lot of doctors seem to think that rare means it can't possibly be you! As one who frequently lives in the small percentages of experiences, that gets old really fast.
This is so true! I'm all for "horses not zebras" principle when you start the differential, but it's only useful as long as zebras aren't falling through the cracks, and this happens all the time (yes, I too am a medical freak -- as my rheumy says, "You write your own book, don't you?"). Not only do people often dismiss "rare" as "impossible," but we keep learning that some conditions we used to think were rare are actually more common than we thought, just underdiagnosed. It can be some vicious circle.
I’m thinking about weight. You cannot imagine my utter rage at being told to do things I already did and stop doing things I already did not do.
I could not lose weight no matter what. Doctors clearly didn’t believe a word I said about my diet.
“Cut down on fast food,” they’d advise. I almost never ate that. I was living on homemade foods, heavy on the veggies and beans. I counted calories. I tried various diets. I was told I probably didn’t follow them right.
Started a GLP-1 and am now a healthy weight. I changed literally nothing about my diet and movement.
I'm so happy you have help at last! My sister was in a similar situation most of her life: obesity, even though she ate well, exercised, tried diets -- nothing ever worked. She had other complicated symptoms we tried to diagnose for decades, and finally we figured out she had Celiac disease. After she started strict gluten-free diet, her symptoms abated one by one, and a year later she started losing weight and lost half her body mass.
Thank you for putting this into words. The timing is perfect as I am about to see my PCP for a physical, a time when I can freely express my concerns and needs and yet still end up too often feeling like I’m a hypochondriac because there are things going on in my body that don’t show up on many usual tests ands I am female and over 40. I like this dr and still struggle with feeling I will not be believed or taken seriously enough. Sigh…
I'm a patient advocate and generally know how to assert myself with doctors, but sometimes I take a patient advocate with me. It's harder to advocate for yourself than another. Is there anyone who can come with you for support? It makes a huge difference for a lot of people.
Very successful visit with my pcp who believes I know more about my body and many of my health issues than he does and is willing to partner with me and throw a little compassion my way.
Me too. My pcp knows I am very “picky” about drs and tells me every time I see him that he appreciates me continuing to choose him. Perhaps he’s a bit of a people pleaser with me. lol
This year, an ER doctor decided that I had a PE and he was gonna save me from it. I didn’t think I had a PE, but they convinced me that it had to be ruled out. So I spent a night in the hospital hopped up on steroids and had the test in the morning. The test was very unpleasant and I had a really bad flashback afterwards.
When the resident came by to talk to me about my situation, I was not in a stable emotional state. Even after some anti-anxiety medication, the conversation with the resident and attending was not pleasant or helpful. They wanted to do a slew more testing, and I had to declare that I wasn’t gonna get a pacemaker even if I had a dangerous arrhythmia before they would let me decline the testing. Eventually they let me go home, where I could get my balance, talk to my cardiologist, and try to get other symptom management on board.
That doctor who was sure he was gonna save me? Never saw him again. He is probably still patting himself on the back that he got me into a situation that upended my mental health and didn’t help my physical health.
Thank you for this wonderful story! When I check my "humility meter," I often think of how willing you are to admit your mistakes and learn from them.
One of my (many) stories of this sort happened in the spring of 2018. I'd just been (finally, after 15 years) diagnosed with mixed connective tissue disease, and my rheumatologist put me on a standard first-line treatment: prednisone and hydroxychloroquine. A few days later I developed a rash, then high fever, and ended up spending 8 days in a hospital with AGEP (a Steven-Johnson type syndrome), sloughing skin in layers, on IV morphine. It was a rare but known allergic reaction to hydroxychloroquine.
While in the hospital, I started having palpitations and a strange feeling of wrongness in my chest. They did a resting EKG and said I was fine. At discharge, the attending gave me a card with a number to call if something goes wrong in the next few days. Once I got home, I started feeling worse: I had dyspnea lying down or sitting up and could only recline at a certain angle, I had pounding palpitations, and I had a low-grade burning pain in my chest I'd never felt before. I didn't know why it was so scary, but it felt scary. I've lived with different kinds of pain my whole life, and I know the difference between pain I just have to put up with and pain that signals that something is very wrong.
I called the number on the card and never got a callback. I called my pulmonologist, who said, "Sometimes when you eat too much, your stomach can press on your diaphragm, and it's hard to breathe." Finally, my sister bundled me up and brought me to my PCP's office. He did a resting EKG (normal) and took bloodwork; two days later he sent a provider letter that said, "Your labs are normal. Continue with previous therapy."
After almost a month of this, my rash came back and I spent another three days at the same hospital. I kept complaining about dyspnea and chest pain. They refused a cardiology consult ("Not warranted") but did an echo, which didn't show anything. I was discharged after the rash abated.
A week after that, I had a pulmonology follow-up. I was sitting at the doctor's desk, exhausted, my heart rate at 110, across from the doctor's NP. "There's no reason," she said, "you should have tachycardia sitting still." And she took me by the hand and led me to the office of the cardiologist she trusted. He asked me five or six questions, then put his hand on my shoulder and smiled. "Aww," he said. "You have pericarditis. It can be caused by your autoimmune disease, and you just had a massive inflammatory crisis, which kicked it into high gear. Inflammatory pericarditis doesn't show up on an EKG."
He prescribed colchicine, and days later I could breathe and walk. I'm still on it. And he's still my cardiologist -- and I've brought three family members to him. When you find a critically thinking clinician who cares and has respect, you hold on to them for dear life.
Yes I have found that the NPs and PAs can be more on the ball than the physicians because they don’t let their degrees get in the way of our Google Searches 🤣
Seriously, though, the PA I see for my Post Covid ME/CFS started me on Colchicine for joint pain and it’s also helped with my chest pain. What’s old is new again!
Even veterinarians can fall prey to this phenomenon. When our dog spent two days licking his paw, I decided to have it looked at. Vet explained that it’s a psychological habit that dogs get into when they are bored.
Nope. This is a dog that has us for companionship 24/7. I kept insisting so he finally took him back into the exam room to dig deeper (literally) into what was what. Yep, a big long cheatgrass embedded below the skin between his toes. Glad I pressed the matter.
I’m a retired vet. After a few years, I learned that if someone thinks their pet has a problem, there is a problem, whether or not I can see it right away. You just need to listen and keep looking until you find it.
I love your question at the end! Is there a woman in the audience that could answer no? Thank you for being who you are, and respecting patients' dignity and agency. We are the experts! nora ann
My spouse has been going through this. It has gone on for years, but right now, after having every test his ever-changing symptoms point to, we have nothing but a possible ALS diagnosis. It may be the true diagnosis but his PCP has been irritated with him and not exactly keeping his eye on things. When his sodium was critically low he was told to quit drinking water.
“Between hope and broken hearts” what a fragile place to be! I truly hope you get an answer soon. And if there cannot be an answer, I hope there would be transparency and courage for us to say “I don’t know.” 🥹
Jeeze. Another beautifully written letter. This is something I think a lot of us fear, especially us non physicians lol. I'm thankful that so far, my PCP has been great about listening and guiding instead of demanding and "knowing".
To be honest, I've still not been believed. I went to both my PCP and a doctor at my university. I told them about my dizzy spells, the sharp pains shooting through my body at random times, the way my hands and legs just cease to work as well once in a while, the way I can't stand for more than 15 minutes without stabbing pain in my heels, the way I'm always exhausted and sleeping doesn't fix it. My PCP never listened, even once. She told me it was all just normal. The doctor at my school believed me at first, but after two rounds of blood tests came back fine, he told me that I should just focus on trying to get better and stop using my cane. I bought my cane because I was near a pharmacy on the first day my pain was too bad for me to be able to walk; it was the only way I could make it back to my dorm.
I'm getting a new PCP in January... I really, really hope he believes me.
"Just try not to rely on your cane." Wow. These days when I sense gaslighting I ask directly: are you gaslighting me? My therapist might say that's not a very skillful way to put it...Good luck with meeting new PCP this coming year! May the Year of the Horse carry you forward a thousand miles!!
After my 3rd baby, my energy level never returned to normal. I saw my primary physician who said it was “the blues” & I should rest more. I stopped asking & started drinking green tea. My weight steadily increased year-by-year. The various doctors said increase activity & decrease calories. Years go by; it all continues. Now I drink green tea all day. Eventually, a primary doctor finds my A1C has been slowly creeping up & suggests I try metformin “for awhile”. My energy increases, my weight is steadily dropping (1 lb/wk) and I’m almost myself again. Soooo wish I had pushed years ago.<sigh>
I have what turned out to be post Covid ME/CFS and started looking for answers back in 2020; if only took 4 1/2 years for a diagnosis. Most of my doctors were more puzzled than dismissive ( except for the first cardiologist I saw)
My comment, however is about what my late mother endured when she became pregnant with me, her third child, at the age of 40. This was in 1958 here in California. Once I learned about it, I understood why she never trusted doctors.
First I was “menopause.”
She went back when she could feel the baby bump herself.
I was then declared a “tumor.” Fortunately she didn’t proceed with arranging the recommended immediate hysterectomy.
When I started kicking, she went back to the same doc; she was told how very difficult it would be for a couple who already had two older children to raise a baby and offered first an ( illegal at the time) abortion, and when she refused, was told that there was a nice local family who wanted a baby…
I am not making this up!
Post partum, she developed what I now believe was ME/CFS and was unable to care for me. Fortunately I had an older sister who loved babies!
She struggled with her illness for the rest of her life. Everyone, except for my father, including doctors, just thought she had suddenly become lazy and crazy.
Things might not be perfect nowadays but they have come a very long way.
Wow!!! Thank you for sharing this story. I don’t even know where to start. Imagine if she had a hysterectomy with you in her uterus!! And then the audacity of telling people who to live their family life… you are right, I constantly feel we live in a fortunate time with advancement. But there are moments that take me back in time and make me disoriented where we are in progress. And unfortunately those moments are not uncommon. Hence why this newsletter 🫠
Yes, just imagine how it might have gone had my mother not been an assertive college graduate Army veteran married to a respected skilled tradesman living in an affluent coastal community! If they tried this with her, who knows what went on!! My sister said she’d never forget her terrified expression when she got back into the car and announced that she had a tumor. After the initial shock, she reassessed the doctor’s findings for herself.
He continued as a highly regarded physician for many years after that but my mom always referred to him as a “paternalistic quack”!🦆
I have Primary Carnitine Deficiency, a rare metabolic disorder that straddles the line between muscular dystrophy, fatty oxidation disorder, and mitochondrial disorder. Beginning in childhood, I was small and clumsy and had severe muscle pain that was dismissed as growing pains, and chronic digestive issues. I had my first child at 24; she was born at 34 weeks, and became severely ill at 12 weeks old with congestive heart failure. Despite all efforts to save her, she died at 17 weeks old. The autopsy results showed that her cause of death was heart failure due to Primary Carnitine Deficiency. A month later, I had a muscle biopsy that revealed that I, too, had the same condition. I was lucky that I was still alive without intervention.
For several years, I was being treated by a wonderful physician at an academic institution who was highly respected and very knowledgeable. The symptoms that I struggled with since childhood were finally being managed and I was receiving supplemental prescription carnitine.
When my physician retired from clinical practice, my care was transferred to a pair of specialist physicians. These physicians brought me in for an appointment to tell me that they reviewed my records and decided that I didn’t have Primary Carnitine Deficiency, and that I was being discharged from the practice. Suddenly, I was without any further treatment for a diagnosis that I knew could become fatal, and my medical records now had incorrect information about my medical diagnosis.
Thankfully, my primary care physician stepped up to help me by providing the prescription medication that I needed. It took more than a year to find another specialist who could take over my care. I had to get my diagnosing physician to write a letter to the academic institution to fix the incorrect information in my medical records. All this because 2 physicians who NEVER MET ME, but read my medical records, decided that my diagnosis wasn’t accurate.
Wow!! Thank you so much for sharing. Mad respect to the primary care physician (proudly one of us!) who stood up for you! And shame on those who literally dismissed you.
I can’t believe I didn’t share this story with you yet. When I was 14 my ears were suddenly stuffy and I had a lot of ringing noise. I had had a cold and missed a week of school because I didn’t like school that year. I never had a fever or anything serious. The second day after I went back I remember not being able to hear my English teacher at all as she came to each desk to whisper something to us. The cafeteria noise was muffled.
Saw my pediatrician where I couldn’t hear any of the “hear the beep, raise your hand” test. Then saw a chiropractor to try to “push fluid from my ear canals,” and then finally saw an audiologist and ENT. I could hear the beeps on the audiologist’s test a little better and I think she was able to talk to me through the headset when I was in the sound proof testing booth.
I learned years later that the ENT told my parents “sometimes children this age pretend things to get attention,” but the audiologist stood up for me and said there was no way was I faking. The ENT had never seen a case of sudden hearing loss affect both ears simultaneously. I kept going to that office because he was the only ENT in my town. He never had much to say at my frequent visits but the audiologist and I became friends.
This was 1993 and before the internet. Nowadays you can google and find information about sudden sensorineural hearing loss which tells you it should be treated as an emergency. We assume it was a virus that caused mine.
“Sometimes children pretend to get attention”??? Cough gaslighting cough.
I used to have a neighbor friend whose daughter lost her hearing after a fever (before I met the mother, and she was an adult on her own by then so I don't know how her drs viewed it.) I've noticed a lot of doctors seem to think that rare means it can't possibly be you! As one who frequently lives in the small percentages of experiences, that gets old really fast.
This is so true! I'm all for "horses not zebras" principle when you start the differential, but it's only useful as long as zebras aren't falling through the cracks, and this happens all the time (yes, I too am a medical freak -- as my rheumy says, "You write your own book, don't you?"). Not only do people often dismiss "rare" as "impossible," but we keep learning that some conditions we used to think were rare are actually more common than we thought, just underdiagnosed. It can be some vicious circle.
I’m thinking about weight. You cannot imagine my utter rage at being told to do things I already did and stop doing things I already did not do.
I could not lose weight no matter what. Doctors clearly didn’t believe a word I said about my diet.
“Cut down on fast food,” they’d advise. I almost never ate that. I was living on homemade foods, heavy on the veggies and beans. I counted calories. I tried various diets. I was told I probably didn’t follow them right.
Started a GLP-1 and am now a healthy weight. I changed literally nothing about my diet and movement.
I'm so happy you have help at last! My sister was in a similar situation most of her life: obesity, even though she ate well, exercised, tried diets -- nothing ever worked. She had other complicated symptoms we tried to diagnose for decades, and finally we figured out she had Celiac disease. After she started strict gluten-free diet, her symptoms abated one by one, and a year later she started losing weight and lost half her body mass.
Thank you for putting this into words. The timing is perfect as I am about to see my PCP for a physical, a time when I can freely express my concerns and needs and yet still end up too often feeling like I’m a hypochondriac because there are things going on in my body that don’t show up on many usual tests ands I am female and over 40. I like this dr and still struggle with feeling I will not be believed or taken seriously enough. Sigh…
You got this!! Good luck!!!
I'm a patient advocate and generally know how to assert myself with doctors, but sometimes I take a patient advocate with me. It's harder to advocate for yourself than another. Is there anyone who can come with you for support? It makes a huge difference for a lot of people.
Very successful visit with my pcp who believes I know more about my body and many of my health issues than he does and is willing to partner with me and throw a little compassion my way.
Wow!!! That’s amazing. Kudos for the PCP. Very proud.
That's awesome! I hope it keeps going this well!
Me too. My pcp knows I am very “picky” about drs and tells me every time I see him that he appreciates me continuing to choose him. Perhaps he’s a bit of a people pleaser with me. lol
This year, an ER doctor decided that I had a PE and he was gonna save me from it. I didn’t think I had a PE, but they convinced me that it had to be ruled out. So I spent a night in the hospital hopped up on steroids and had the test in the morning. The test was very unpleasant and I had a really bad flashback afterwards.
When the resident came by to talk to me about my situation, I was not in a stable emotional state. Even after some anti-anxiety medication, the conversation with the resident and attending was not pleasant or helpful. They wanted to do a slew more testing, and I had to declare that I wasn’t gonna get a pacemaker even if I had a dangerous arrhythmia before they would let me decline the testing. Eventually they let me go home, where I could get my balance, talk to my cardiologist, and try to get other symptom management on board.
That doctor who was sure he was gonna save me? Never saw him again. He is probably still patting himself on the back that he got me into a situation that upended my mental health and didn’t help my physical health.
Gah makes me wonder how blindsighted we often are without ever finding out we were wrong!!
Thank you for this wonderful story! When I check my "humility meter," I often think of how willing you are to admit your mistakes and learn from them.
One of my (many) stories of this sort happened in the spring of 2018. I'd just been (finally, after 15 years) diagnosed with mixed connective tissue disease, and my rheumatologist put me on a standard first-line treatment: prednisone and hydroxychloroquine. A few days later I developed a rash, then high fever, and ended up spending 8 days in a hospital with AGEP (a Steven-Johnson type syndrome), sloughing skin in layers, on IV morphine. It was a rare but known allergic reaction to hydroxychloroquine.
While in the hospital, I started having palpitations and a strange feeling of wrongness in my chest. They did a resting EKG and said I was fine. At discharge, the attending gave me a card with a number to call if something goes wrong in the next few days. Once I got home, I started feeling worse: I had dyspnea lying down or sitting up and could only recline at a certain angle, I had pounding palpitations, and I had a low-grade burning pain in my chest I'd never felt before. I didn't know why it was so scary, but it felt scary. I've lived with different kinds of pain my whole life, and I know the difference between pain I just have to put up with and pain that signals that something is very wrong.
I called the number on the card and never got a callback. I called my pulmonologist, who said, "Sometimes when you eat too much, your stomach can press on your diaphragm, and it's hard to breathe." Finally, my sister bundled me up and brought me to my PCP's office. He did a resting EKG (normal) and took bloodwork; two days later he sent a provider letter that said, "Your labs are normal. Continue with previous therapy."
After almost a month of this, my rash came back and I spent another three days at the same hospital. I kept complaining about dyspnea and chest pain. They refused a cardiology consult ("Not warranted") but did an echo, which didn't show anything. I was discharged after the rash abated.
A week after that, I had a pulmonology follow-up. I was sitting at the doctor's desk, exhausted, my heart rate at 110, across from the doctor's NP. "There's no reason," she said, "you should have tachycardia sitting still." And she took me by the hand and led me to the office of the cardiologist she trusted. He asked me five or six questions, then put his hand on my shoulder and smiled. "Aww," he said. "You have pericarditis. It can be caused by your autoimmune disease, and you just had a massive inflammatory crisis, which kicked it into high gear. Inflammatory pericarditis doesn't show up on an EKG."
He prescribed colchicine, and days later I could breathe and walk. I'm still on it. And he's still my cardiologist -- and I've brought three family members to him. When you find a critically thinking clinician who cares and has respect, you hold on to them for dear life.
Wow the NP walked you to the cardiologist office, what a moment of true collaboration!
But seriously, “sometimes when you eat too much your stomach presses on the diaphragm?” What the actual heck?! 🤯🤯🤯
Yes I have found that the NPs and PAs can be more on the ball than the physicians because they don’t let their degrees get in the way of our Google Searches 🤣
Seriously, though, the PA I see for my Post Covid ME/CFS started me on Colchicine for joint pain and it’s also helped with my chest pain. What’s old is new again!
If a patient seems insightful, I’ll ask them — what do you think is going on? Helps my batting average.
Even veterinarians can fall prey to this phenomenon. When our dog spent two days licking his paw, I decided to have it looked at. Vet explained that it’s a psychological habit that dogs get into when they are bored.
Nope. This is a dog that has us for companionship 24/7. I kept insisting so he finally took him back into the exam room to dig deeper (literally) into what was what. Yep, a big long cheatgrass embedded below the skin between his toes. Glad I pressed the matter.
I’m a retired vet. After a few years, I learned that if someone thinks their pet has a problem, there is a problem, whether or not I can see it right away. You just need to listen and keep looking until you find it.
🩵🩵🩵
I love your question at the end! Is there a woman in the audience that could answer no? Thank you for being who you are, and respecting patients' dignity and agency. We are the experts! nora ann
🩵🩵🩵
My spouse has been going through this. It has gone on for years, but right now, after having every test his ever-changing symptoms point to, we have nothing but a possible ALS diagnosis. It may be the true diagnosis but his PCP has been irritated with him and not exactly keeping his eye on things. When his sodium was critically low he was told to quit drinking water.
We ricochet between hope and broken hearts.
“Between hope and broken hearts” what a fragile place to be! I truly hope you get an answer soon. And if there cannot be an answer, I hope there would be transparency and courage for us to say “I don’t know.” 🥹
I thought about your post as I lay awake last night. Thank you so much for replying, and seeing the most important phrase in my comment.
I do have a story about how a medical practitioner actually heard me, and how it changed my life, if you are interested.
I, for one, am interested. :-)
Me too!!!
Yesssssssss
This is terrible, such an anguished place to be in! I'm so sorry. I'll be keeping you and your husband in my thoughts. I hope you get answers!
Thank you so much. Lots of deep breaths.
Jeeze. Another beautifully written letter. This is something I think a lot of us fear, especially us non physicians lol. I'm thankful that so far, my PCP has been great about listening and guiding instead of demanding and "knowing".
Thank you for this 🙏🏼
Thank you so much for reading!! And also I hope you get to keep you PCP forever!!
To be honest, I've still not been believed. I went to both my PCP and a doctor at my university. I told them about my dizzy spells, the sharp pains shooting through my body at random times, the way my hands and legs just cease to work as well once in a while, the way I can't stand for more than 15 minutes without stabbing pain in my heels, the way I'm always exhausted and sleeping doesn't fix it. My PCP never listened, even once. She told me it was all just normal. The doctor at my school believed me at first, but after two rounds of blood tests came back fine, he told me that I should just focus on trying to get better and stop using my cane. I bought my cane because I was near a pharmacy on the first day my pain was too bad for me to be able to walk; it was the only way I could make it back to my dorm.
I'm getting a new PCP in January... I really, really hope he believes me.
"Just try not to rely on your cane." Wow. These days when I sense gaslighting I ask directly: are you gaslighting me? My therapist might say that's not a very skillful way to put it...Good luck with meeting new PCP this coming year! May the Year of the Horse carry you forward a thousand miles!!
Reading your words is like a healing balm for every time I've been disbelieved by medical professionals.
🥹🥹🩵 And I don’t know if this provides any solace but I’ve been that medical professional and I’m slowly changing and everyday learning!!
After my 3rd baby, my energy level never returned to normal. I saw my primary physician who said it was “the blues” & I should rest more. I stopped asking & started drinking green tea. My weight steadily increased year-by-year. The various doctors said increase activity & decrease calories. Years go by; it all continues. Now I drink green tea all day. Eventually, a primary doctor finds my A1C has been slowly creeping up & suggests I try metformin “for awhile”. My energy increases, my weight is steadily dropping (1 lb/wk) and I’m almost myself again. Soooo wish I had pushed years ago.<sigh>
Thank you for listening.
Thank you for reading. 🩵