Anonymous wrote:This is the saddest post that I think that I've ever read on DCUM. I suffer from a chronic neurological disorder and I know that there are many individuals who suffer alongside me. We cannot point to the pain and people cannot see it (because it's tucked away in our central nervous system and brains) so most people just dismiss it. It really is such a terrible situation to be in. Luckily for me, I have an incredibly supportive family. But this thread hammers home why there is such a high rate of suicide for chronic pain sufferers across the board. And yes, some of the neurologist that I've seen along the way have ben just as arrogant and condescending so it is important to keep looking for a physician who will take us seriously. I've known many patients who've gone misdiagnosed for decades and told that it's "only in their heads" to find out years later that they have a very real, and very treatable, CSF leak, autoimmune disorder or other ailment. It's just so sad because if someone - anyone - had cared or listened in the beginning they wouldn't have had to suffer for so many years. People are just jerks.

PP. +1,000! TAKE THESE PEOPLE SERIOUSLY.

This is the saddest post that I think that I've ever read on DCUM. I suffer from a chronic neurological disorder and I know that there are many individuals who suffer alongside me. We cannot point to the pain and people cannot see it (because it's tucked away in our central nervous system and brains) so most people just dismiss it. It really is such a terrible situation to be in. Luckily for me, I have an incredibly supportive family. But this thread hammers home why there is such a high rate of suicide for chronic pain sufferers across the board. And yes, some of the neurologist that I've seen along the way have ben just as arrogant and condescending so it is important to keep looking for a physician who will take us seriously. I've known many patients who've gone misdiagnosed for decades and told that it's "only in their heads" to find out years later that they have a very real, and very treatable, CSF leak, autoimmune disorder or other ailment. It's just so sad because if someone - anyone - had cared or listened in the beginning they wouldn't have had to suffer for so many years. People are just jerks.

Anonymous wrote:Just curious, OP what did you end up doing?

Isn’t it obvious? She continued being a jerk to her sister.

Anonymous wrote:Your sister has had years of pain from this issue before diagnosis. She was calling you because she has been frustrated and in PAIN. If you are a woman, you know that most doctors seem to take women less seriously, always seem to think they are being overly dramatic. Your sister was frustrated and needed to vent.

I hope her surgery goes well and she is able to resolve her constant pain.

The idea of neurosurgery is scary. The idea of surgery during covid is scary. ( and the idea that covid could cancel her surgery is scary too)

Be nice.

This! 100%

Once doctors start complaining about the “worried well” it’s time for them to stop seeing patients and go into another branch of medicine. As for watching the very ill die gracefully .... really try another field. I’m sorry PP medicine didn’t work out for you as a career.

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

Yes that’s what my brother the doctor said when I struggled through my brain tumor. Yep. Fortunately my real doctors were more caring and I sought therapy from more compassionate docs. OP just stay out of your sisters life. She doesn’t need your “help “

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

Wow, this is one of the most infuriating posts I have ever read on DCUM. It certainly gives insight as to why those of us with severe and rare conditions get treated so badly by arrogant medical professionals. It took me literally ten years to get a diagnosis because of asshats like you. And guess what? As soon as the underlying rare (and life-threatening) medical issue was found and (expensive and rare) treatment started, all of the issues I had been struggling with for over ten years disappeared and have stayed gone for years.

You are a raging a**hole. I hope you know that. You are too arrogant to say "I don't know" and so you blame it on the patients and call them "worried well." You could be honest and say "I don't know," but instead you gaslight them, you tell them their symptoms are in their heads, you write coded and nasty notes in their charts so their next doctors don't take them seriously either, just to preserve your ego. You are awful, awful, awful. YOU are the reason I suffered for ten long years.

+1 My older sister was treated just like this by her arrogant GP for several years. And then, just a day after seeing him for more symptoms that were concerning to her and him dismissing her once again, she dropped dead in the middle of a conversation with our elderly parents. Seriously, as my dad described it, she was gone before she even hit the floor. We don't even know what killed her. That and the complete unpreparedness of a single medical professional in this country to deal with coronavirus has made me more skeptical than ever about all of them.

I'm very sorry for your loss. That is an awful story. They couldn't even get answers from an autopsy?

It sounds as if your sister was terrified and had her medical concerns dismissed by doctors for a long time. Focus more on offering support, and less on your worry about feeding into her need for attention. That latter is not your role as her sister.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

Wow, this is one of the most infuriating posts I have ever read on DCUM. It certainly gives insight as to why those of us with severe and rare conditions get treated so badly by arrogant medical professionals. It took me literally ten years to get a diagnosis because of asshats like you. And guess what? As soon as the underlying rare (and life-threatening) medical issue was found and (expensive and rare) treatment started, all of the issues I had been struggling with for over ten years disappeared and have stayed gone for years.

You are a raging a**hole. I hope you know that. You are too arrogant to say "I don't know" and so you blame it on the patients and call them "worried well." You could be honest and say "I don't know," but instead you gaslight them, you tell them their symptoms are in their heads, you write coded and nasty notes in their charts so their next doctors don't take them seriously either, just to preserve your ego. You are awful, awful, awful. YOU are the reason I suffered for ten long years.

+1 My older sister was treated just like this by her arrogant GP for several years. And then, just a day after seeing him for more symptoms that were concerning to her and him dismissing her once again, she dropped dead in the middle of a conversation with our elderly parents. Seriously, as my dad described it, she was gone before she even hit the floor. We don't even know what killed her. That and the complete unpreparedness of a single medical professional in this country to deal with coronavirus has made me more skeptical than ever about all of them.

Just curious, OP what did you end up doing?

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

+1 Very well said. Unfortunately you are and will continue to get hammered by the unwell that frequent this board in particular but it is good to hear your perspective. Maybe it will reach some people here who need to hear it.

Oh it reached me. I get that the medical professionals who ignore people justify it with this rationale. Op’s sister is a female. So if she does not have an easy diagnosis it is because she is a dramatic female who needs therapy. I guess the partial paralysis is a manifestation of her need for attention.

So, your sister has been let down by the medical community over and over and your response is to pile on telling her you do not believe her also? And then when she finally gets a diagnosis, you are afraid of her getting attention?

Op,

I hope you never have to experience chronic pain and go through the hell of doctors ignoring you because you are a woman. You have no idea how much chronic pain takes from your life.

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

+1 Very well said. Unfortunately you are and will continue to get hammered by the unwell that frequent this board in particular but it is good to hear your perspective. Maybe it will reach some people here who need to hear it.

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

Wow, this is one of the most infuriating posts I have ever read on DCUM. It certainly gives insight as to why those of us with severe and rare conditions get treated so badly by arrogant medical professionals. It took me literally ten years to get a diagnosis because of asshats like you. And guess what? As soon as the underlying rare (and life-threatening) medical issue was found and (expensive and rare) treatment started, all of the issues I had been struggling with for over ten years disappeared and have stayed gone for years.

You are a raging a**hole. I hope you know that. You are too arrogant to say "I don't know" and so you blame it on the patients and call them "worried well." You could be honest and say "I don't know," but instead you gaslight them, you tell them their symptoms are in their heads, you write coded and nasty notes in their charts so their next doctors don't take them seriously either, just to preserve your ego. You are awful, awful, awful. YOU are the reason I suffered for ten long years.

Anonymous wrote:

Anonymous wrote:I am 44 and she’s is 30. I love my sister, shes extremely intelligent, funny and generous. However, she can also be her manipulative. I think I am frustrated because it has been over a year since she went to the ER and I felt she was finally at a better place with all this medical drama. I do recognize that if she ends up having spinal surgery this is very serious. I am worried about her. This is going to sound terrible, but I feel like this is one those situations where she went from specialist to specialist until someone agreed something was wrong with her. We all have minor medical issues that if we had dozens of scans, and test run, they would find something too.

-OP

Hi OP, I am sorry that your sister has been suffering. It sounds like she may have a legitimate diagnosis to explain her symptoms. However,
as a medical professional, I can confirm: if you look hard enough, you WILL find something. Unfortunately, it is not uncommon for patients with undiagnosable and/or functional disorders to undergo unnecessary interventions for incidental findings which are discovered during exhaustive workups. Seeing many different doctors, or doctor shopping, increases the likelihood of this. Most surgeons are judicious, but when you're a hammer, everything looks like a nail. These patients are suffering greatly, but the etiology of their suffering is often psychological. This doesn't make their suffering any less real or important, but it should change the approach to management.

I cannot say which category your sister belongs to, but I know as a professional and family member, providing constant attention and support can take a toll. Regardless of whether her illness is mainly physical or psychological, managing a chronic illness of any nature can take a psychological toll. Counseling, or medications, can similarly help both a functional fibromyalgia patient or a cancer patient cope with their physical and psychological distress. One can suggest therapy without implying "it's all in your head". Perhaps you could warmly encourage her to seek out therapeutic support to help her cope with her diagnosis (syrinx, chronic pain/headache/neuropathy, or otherwise).

FWIW, the sickest patients are often the most graceful. The worried well, on the other hand...

PP, your response is a bit obnoxious. Why are you implying that she is just worried?

As someone else who is in healthcare and has a spinal issue (injury) that was repeatedly missed, misdiagnosed, or written off as "just workout more-you probably just have weak muscles (NOT true, per the PT)" but is in treatment and also a candidate for spinal surgery, it is entirely possible for multiple doctors to miss things, especially if they refuse to do proper testing.

Ex: they only do an xray instead of an xray AND an MRI. It took moving and literally not being able to move before a new set of local specialists took a look (because they were the closest medical facility), did the proper testing (as was indicated and I pointedly requested) that I began to receive proper treatment. I am also a candidate for spinal surgery and hoping to avoid it! If they'd correctly id'd the issue previously then I absolutely would have been rushed into surgery. I'm going to guess OP's sister and I have the same thing.

In no way is a herniated disc-especially one that is impinging a nerve- just psychological or made-up. I have a lot of resentment towards my primary and the hospital where I was taken after the initial accident for missing it and ignoring my requests to do imaging based on the pain while I was there and asked again and again after being effectively paralyzed for a week after they released me.

If the sister is only "manipulating" people to try and get them to take her medical issue seriously, it isn't manipulation so much as begging for assistance and reassurance while she is in pain. Just because her arm is lopped off and you can't see the issue yourself doesn't mean it isn't real and exists.


OP, gifting a TENS unit like the one from compex to help with your sister's pain is a good place to start, along with a sincere apology. You have an opportunity to make up for being such a jerk-take it.