September 4, 2013

Dear Dr. X:

I was hoping to be able to find you as I wanted to update you on what has happened since we last met. When I saw that you were a neurology resident, I thought it was even more important that you know the outcome of my story.

I first saw you for my concern about gastrointestinal complaints (severe constipation, reflux) and weight loss at the (hospital A) ER department in October, 2011. Almost three months later, I saw you again after I had been admitted to (hospital B) for more of the same. In addition, you may recall that I had trigeminal neuralgia that my former neurologist called ‘idiopathic’ without having truly investigated the cause of the pain.

You wrote the discharge summary from (hospital B) and you did a good job on it with the information that was in the chart that I have reviewed. You said that I was given the assurance that there was no underlying patholog y. But I am disappointed that you didn’t chart at all about my numb feet . I clearly recall telling you about the numbness.

I had been trying for months to get help as I knew there was something seriously wrong with my body but nobody would really listen to me. Unfortunately, this happens to a lot of people, mostly women. Once the team at (hospital B) decided I was mentally ill with an eating disorder, I knew I wasn’t getting anywhere. I knew that I had not been fully assessed. I did have hope when I saw you again as that’s when my general care did improve – perhaps Dr. F didn’t like me. Although, I imagine it must be difficult for all concerned who had to ‘care’ for me when they must have thought I was just doing all of that to get attention. None of you had any idea how much I had suffered and how much more suffering I was going to have until I got a diagnosis and some help. You will probably never, ever experience that type of pain in your life, even on your deathbed.

After my discharge from (hospital B), I went to see the GP I had been seeing for only a couple of months. He laughed at me and mocked after he received the reports from (hospital B). I quickly found a new GP and things started to turn around after that.

An MRI in May 2012 revealed evidence of demyelination. I had to chase down Dr.(neurologist #3) for the recommended follow-up MRI in July, then I had to bypass him to get myself referred to the MS Clinic. Dr. (neurologist #3) saw me on October 9, 2012, and told me I couldn’t have MS if there were no changes in my muscle strength or reflexes. He was wrong.

It was at UBCH Urgent Care in November 2012 where I was finally was seen by some doctors who decided not to go the psychiatric route (as chosen by hospital B) and admitted me for pain and brought in a neurologist right away. Dr. Silke Cresswell, neurologist, advocated for me to be admitted. I was diagnosed quickly with MS and the brainstem lesions from the MRIs that (neurologist #3) ordered – but never looked at – were consistent with my major physical complaints. (left medulla, right pons)

As I tend to be very sensitive to drugs, I developed an allergy to phenytoin. I was unable to control my pain with pharmaceuticals. I then had to go to Winnipeg for a balloon compression rhizotomy that has taken me out of pain for now.

I am hoping that my case will be of benefit for medical professionals to learn more about MS and its interesting presentations. I have learned that many of us with MS are misdiagnosed with psychiatric conditions before our concerns are taken seriously.

I have outlined my case in great detail on my blog at my website, www.jennifersweeney.ca As I haven’t been able to work in my profession for a while, I converted my professional website into a personal site with my online medical record.

I invite you to look at it and perhaps to share it with some of your colleagues. I should not have been left as long as I was without a brain MRI, especially with the facial pain, as it could have had multiple etiologies, including a brain tumour.

You were nice to me and I appreciated that. I have hope that you will be part of a new generation of neurologists that combine good bedside manner with superior diagnostic skills. Please don’t hesitate to order MRIs, read the reports and insist on looking at the images yourself. It may be time consuming but you may spare somebody the suffering I have been through.

I’ve included a copy of my MRI from March 2013 for you to review. It’s amazing to me that I can have that many lesions, including old (cavitated) ones and dark holes and still be able to go through a physical exam with no observable evidence of MS. In order to get to the diagnosis, a doctor would actually have to listen to me – and look at the MRI.

Thanks,

Jennifer Sweeney, M.Sc.
Vancouver, B.C.

www.jennifersweeney.ca

I have been preparing my talk for next week when I came across a letter I wrote to the senior internal medicine specialist when I was admitted to hospital in late 2011.

June 25, 2014

I am writing to you regarding our interactions from December 27-30, 2011. I had been admitted through ER to address serious malnutrition. It took me several attempts to get admitted as I had been abandoned by my GP and neurologist and was suffering a lot of pain while eating and had been unable to move my bowels for weeks.

Upon reviewing my records, I noted serious errors in history-taking by Dr. E, who proceeded to make me sound delusional. He was unable to distinguish between my adoptive family and my biological family. Unfortunately, you made no attempt to clarify any of the issues. You did not request a neurology consult for my facial pain or a speech-language pathology consult to address my swallowing problems. And you were the one to refer me to the care of Dr. M as you must have been convinced that I had an eating disorder.

I was disappointed and surprised that you did not write a single chart note. There was no record of our conversation about my right-sided facial droop. ( see enclosed blog post )

I requested all of my records two years ago because I needed to understand why I was laughed at following my discharge and left on my own to diagnose myself. Once I had a brain MRI, I knew I had MS. Unfortunately, because of my lack of visible symptoms, the neurologist I was seeing refused to diagnose me and argued with me. So I went right to the MS Clinic.

I was officially diagnosed with multiple sclerosis by Dr. (neurologist #5) on November 15, 2012, after a severe exacerbation of the trigeminal neuralgia, involving all three divisions of the nerve. He believes I have had MS since at least 2005, which helps me to understand the complexity and ‘atypical’ nature of many of my worsening gastrointestinal symptoms in addition to the trigeminal neuralgia. I have multiple lesions in the right pons as well as the left medulla, consistent with all of my reported symptoms.

I hope in future if you meet another woman like me that you consider the possibility of MS. I had the additional misfortune of a neurologist who did not believe I had MS either, even with the subsequent MRI evidence. As my husband and I have both learned through this difficult and painful ordeal, we will remind doctors that atypical presentations often require a bit more curiosity and investigation.

The hierarchy in the medical system does not seem to encourage questions of experienced clinicians. My radiologist friend calls it Eminence Based Medicine. The term originated from O’Donnell M. A sceptic’s medical dictionary. London: BMJ Books, 1997. It’s used in an amusing article by David Isaacs and Dominic Fitzgerald, Seven alternatives to evidence based medicine :

Eminence based medicine—The more senior the colleague, the less importance he or she placed on the need for anything as mundane as evidence. Experience, it seems, is worth any amount of evidence. These colleagues have a touching faith in clinical experience, which has been defined as “making the same mistakes with increasing confidence over an impressive number of years.”7 The eminent physician’s white hair and balding pate are called the “halo” effect.

I recently asked an experienced neuroradiologist to review my MRI from 19 May 2012 as I wanted to know if my brainstem lesions were visible on that MRI. I wasn’t sure if I would even get a response. I am so amazed and impressed. I have encountered the extremes in our healthcare system but once in a while the response is more than you could hope for. He was generous and very kind in his willingness to help me out.

In the letter I had written to him:

I am requesting a favour from you . . . I would like to know two things.

• was the lesion in the pons visible on the first MRI?
• was the lesion in the medulla visible?

As these lesions would explain my facial pain and my GI problems, I wanted to fully understand the negligence of neurologist #3.

On Thursday, October 18, I received a response. He reviewed all three of my scans:

In answer to your question, both the lesion(s) on the right side of the pons (there is probably more than one) and the lesion in the medulla were visible on the first MRI, although not as clearly shown as on the MRI at UBC which was performed with a dedicated MRI protocol and somewhat thinner slices.

Your case is unusual although certainly not unheard of, in that you have quite a number of lesions on your brain MRI (many of which appear old) with little in the way of “classical” symptoms and signs.

That tells me a lot. Yes, my MS is old. And yes, my presentation is unusual. Neurologist #3 had everything he needed after that first MRI to diagnose my MS and my pain. Perhaps neuroradiologists should be given the authority to diagnose MS and remove it from the hands of neurologists? I am sure that we would get earlier diagnoses that way. In my case, it would have saved the system a lot of money.

And at least two lesions on the right side of the pons — yikes. No wonder I had so much pain.

I felt it was important for future patients at the hospital I was in (Dec 27, 2011 – Jan 6, 2012) to continue educating the doctor who was in charge of my care — the one who almost pulled my feeding tube out because I was being ‘non-compliant’ with the treatment plan that was developed without any input from me. At the time I wrote the first e-mail, I knew I had MS but I was unable to identify a lesion in the pons. I was holding onto hope that the facial pain had been resolved, although when it worsened a couple of weeks later, I was pretty sure I had MS-related trigeminal neuralgia .

August 24, 2012

Dear Dr. M:

I’ve been working on some trauma issues related to my health and the care I received. There are a couple of outstanding items I want to bring to your attention and hope that this will be of value to you with future patients.

First of all, the sinus infection and subsequent surgery has been most effective in removing my facial pain. I have been able to manage without Lyrica since May. Following the surgery, I have had two MRIs that reveal MS type lesions in my brain — cortex, cerebellum and brainstem. I haven’t been officially diagnosed yet but the numbness in my feet that I reported while in hospital is likely connected to that.

I was powerless in my situation and wasn’t prepared to argue with you when you were my lifeline. Yet, it was difficult for me to have you say that my swallowing difficulties were ‘perceived’ when there had been no assessment of it. As I was being treated as psychiatric attention-seeker, there was no discussion with me about my care at all, yet, I was supposed to comply with the ‘plan’. It was very tough.

For a bit of background, working with swallowing disorders was one of my areas of clinical expertise. I did focused training on it during my clinical fellowship at Marshfield Clinic in Wisconsin. Ironic, eh? I have taught lots of people about swallowing, including other speech-language pathologists, occupational therapists and radiologists. Not being seen by any swallowing expert was difficult for me. Fortunately, I had compensatory strategies to use to help me as things improved, reaching near ‘normal’ by late February.

The only ‘assessment’ I recall having was one of the residents who ran in to check my gag reflex. Ever since then I have been bothered by the thought that the old myth still survives in medicine. An intact gag reflex tells you that the gag reflex is working. It tells nothing about swallowing.

Thank you for listening. My great hope is that you and your residents take advantage of some internal expertise and learn a bit more about swallowing.

Thank you for your care. I needed your help to survive. Now that I’m alive, I need to figure out what to do with the rest of my life, even if it leads to greater disability. I may continue to do some more speaking and teaching once I get on a handle on the next step of my health journey. I have just started reading “The Autoimmune Epidemic” where surveys have revealed that 45% of people (mostly women) in the early stages of autoimmune diseases have been labelled as hypochondriacs. I am not alone.

December 3, 2012

Dear Dr. M:

I just wanted to give you an update on my status. Following sinus surgery, I had an MRI that revealed evidence of demyelinating disease. A follow up MRI supported the probability of MS. Unfortunately, my neurologist didn’t believe I had MS because I have no evidence of motor problems or reflex problems. I believe this is why I have been dismissed as a ‘psychiatric’ case.

I worked with my great new GP to get a referral to the MS Clinic and had the official diagnosis on November 15. It was an easy diagnosis for neurologist #5 to make just looking at the MRI and listening to my history. He believes I’ve had MS for at least 7 years now. There is a lesion on my right pons (trigeminal nerve) that is consistent with my recurring facial pain. And the lesion on the left medulla (autonomic nervous system) likely explains my gastrointestinal/slow digestion problems.

It’s a relief in some ways to have the diagnosis as it’s validating. I can’t imagine what it would have been like for someone like me before MRIs. Likely would have jumped off a bridge.

It has been a long and difficult road over the past 15 months but at least I have answers and can move forward.

I did mention my numb feet several times in hospital. It didn’t make it in any chart notes or on my discharge summary. Interesting that I have reported numbness on other body parts at different times and it never seemed to make it into reports. I always tried my best to give full and accurate information.

This is a letter I wrote to Dr. Kaufmann, 10 December, 2012, after being denied surgery at VGH and sent home on Dilantin. When I started to have a reaction to the Dilantin, my GP was unable to get any response from Dr. Honey’s office. Neurologist #5 learned that he was out of town. So, I asked my GP to make referral for me to Winnipeg, as I knew of Dr. Kaufmann’s reputation. He also did a procedure that would be better for me and my ‘good’ eye because of the involvement of the upper branch of my trigeminal nerve.

10 December 2012

Dear Dr. Kaufmann,

I have had two very nice conversations with [nurse]. I have had a long and tortuous journey to a diagnosis of multiple sclerosis, made by neurolgist #5 on November 15, 2012.

I have placed a lot of information on my personal website and blog if that will help you understand my situation. I have summarized the history on the page “Facial Pain”. The blog includes some youtube videos, including recent ones of me talking and eating with a straw. It can be found at www.jennifersweeney.ca

I have had recent severe exacerbation of my pain and we are coming to the end of drug management. I have liver toxicity with Tegretol and Dilantin (recent blood work attached) and I am currently on Lyrica, 150 mg bid, with insufficient pain relief.

I am unable to eat except with a straw and have started to lose weight again. One year ago (December 27, 2011) I was hospitalized for the same problems yet was treated as a psychiatric case. Unfortunately, the GI doc who admitted me decided I was a psychiatric case and wrote that I had post-herpetic neuralgia. Never having had shingles, it was a mystery to me. I believe it had something to do with his confirmation bias as he proceeded to make me sound infantile and delusional. Anyway, it’s been a long, difficult year. Finally having the MS diagnosis makes everything make sense.

Also unfortunately, the psychiatrist’s assessment I had while in hospital was the best assessment/summary of my situation up to that date, yet it did not hold much influence in the care I received. I’ve enclosed it here. I did not see a neurologist while there. And the neurologist I was seeing for my facial pain did not believe I had MS, even when I last saw him on October 9, 2012. He hadn’t bothered to look at the MRI from July.

I saw Dr. Honey during my recent hospitalization for pain, yet he saw me when I was out of pain after IV Dilantin. I had been referred to him for a rhizotomy by neurologist #5. I understand that it is important to rule out all drug management before considering a rhizotomy. Less than a week later, I was unable to function or think and then developed a rash. At this point, I believe the rhizotomy is my last hope for any degree of a normal life.

I have pain and or triggers on all 3 branches of my trigeminal nerve. Up until recently, the majority of the pain was in V2, up my face, and around my nose and upper lip. My recent hospitalization was from pain continuing up to V1, all the way up to the top of my head. The pain in V3 is minimal, mostly along the gumline with a major trigger at tooth #44 that has a big impact on my eating. Right now, I have allodynia again in my mouth. It has come and gone over the past 2.5 years. And every time it went away I prayed it wouldn’t come back. Now that I know I have MS, the situation is different.

I have also provided you with a copy of the MRI that was recommended by radiology to assess MS. As I told [nurse], I am willing to go to False Creek Health Care to have another one done privately and quickly if you need to have a better one.

Many thanks,

I was fortunate that they recognized my cry for help and were able to get me in for surgery within a few weeks.

I finished working on a letter to send to the neurologist who failed me. It was a difficult one to write as I wanted to say things like:

I received excellent clinical training in speech-language pathology at Purdue University with an internship at a large VA hospital in Indianapolis, in addition to training in the department of Neurology during my clinical fellowship at Marshfield Clinic. I trained students as well as a member of Clinical Faculty at UBC. There were so many errors and omissions in your reports that I would have failed you if you had been one of my students.

I had to try to let go of my anger and manage my own ego a bit. As much as I wanted to put that paragraph in the letter. I had to re-focus on the purpose of the letter.

So I wrote a better letter and I finished it off by saying:

My hope is that you will order quick MRIs for all your future facial pain patients and to look at them, review them and discuss them with your colleagues and associates to help prevent the degree of pain, suffering, neglect and abuse that I experienced.

And I dropped it off in person at his office at VGH two days ago.

The main reason I want to do this is to help prevent this from happening again to somebody else. Although I may be 1 in a million, if he had done his job, I would have at least been diagnosed earlier. There will be no apology (although one is certainly warranted) but I hope that all future patients of his — and the residents/interns he trains — will benefit from my suffering.

edits to my history that never got corrected

In hindsight, maybe I should have said ‘no’ when he handed me over to the resident to assess . Maybe he would have had a better sense of the history because the assessment report was abysmal. And I naively thought I’d get the time to help correct it but it never got any better.

And the resident will never get the chance to learn that he assessed somebody with MS and missed it too. I wonder if the information about my right upper lip numbness might have provided a clue to the neurologist as it didn’t make it into the report, although it states there was no evidence of trigeminal sensory loss. I guess the kleenex on the face is supposed to be more reliable than my subjective self-report.

Last year, I spoke to my husband about his needing to find a new GP for his benefit as I would not ever contact his GP if he needed help. I would take him to a walk-in clinic or an emergency department before having any interaction with the man who laughed at me and mocked me when I was in pain. That GP continued to receive MRI reports and gastroenterology reports, although I had communicated to my neurologist and gastroenterologist that I had a new GP. He did nothing to correct these wayward reports to the doctors and felt at liberty to read them and discuss them with my husband months later. While he had been my husband’s GP for a few years, he was mine for only three months, from October 18, 2011 to January 18, 2012.

Monday, August 13, 2012

Vancouver, BC

_________ (full name used without the title “Dr.”)

My husband went to see you to on Friday to inform you that he would not be continuing with you as a patient. He let you know that your behaviour towards me on January 18, 2012 was unacceptable when you accused me of pretending to have pain in order to seek attention.

For your information, the gastroenterologist who admitted me to [hospital] in December has been instructed to revise the multitude of errors he made in my intake and other reports, including his difficulty in taking a history from me where he confused my biological family with my adoptive family as well as his made up term [diagnosis] of post-herpetic neuralgia. I have met with their VP of Medical Affairs to discuss the situation.

Your contemptuous tone of voice and your treatment of me on January 18 by telling me that I should see a psychiatrist because all of my problems were “in my head” were highly objectionable. You refused to talk about the side effects of the new medication I was on stating, incorrectly, that I had been on that medication before.

I had not planned on writing to you directly as any confrontation or challenge would be my word against yours as your derision and mocking of me was behind closed doors without witnesses. When I had a pain in my face, you put your hand on your face and said, in effect, “There you go, pretending you have pain just to get sympathy.”

Of course, the sheer irony of all of this is that I had a serious chronic sinus infection that was treated successfully by the brilliant diagnostician and surgeon, Dr. Amin Javer. And, subsequent brain MRIs have revealed possible multiple sclerosis. All in my head, indeed.

When my husband returned from his meeting with you on Friday, Aug 10, 2012, he told me that you had advice for me. It appears that not only did you read the MRI reports that had been sent to you in error; you believed you were at liberty to discuss the results with my husband. This is highly unethical and most shocking to me. Your continued description of my psychologist as my “friend” is also insulting and not becoming of a physician.

No human being should be treated by another human being in the way that you treated me, regardless of mental health. The fact that a physician did it to a vulnerable woman in pain is unpardonable. You are a disgrace to your profession.

Jennifer Sweeney, M.Sc., RSLP

Between October 4, 2005 and June 2007, I did not see a GP as I had decided to leave this GP and I was looking for a new one. I had several doctors retire and transfer my case to other physicians. I had great hope for this one. Unfortunately, the next one was just as bad . . . if not worse.

July 17, 2007

Dear Dr. ______

I wanted to write to you to explain why I have moved to another doctor. My first appointment with you was February 20, 2004 and the last one October 4, 2005. Two of my previous family doctors had closed their practices and I was committed to supporting women doctors.

In the summer of 2005 my father was very ill with esophageal cancer and died seven weeks after his diagnosis. While you were in China, my family dealt with his palliative care, his death, his funeral and his personal and professional business.

The last time we met, I was uncomfortable with our conversation. I had been called back for further testing after a mammogram. As I tried to explain the confusion with follow-up appointments to you and my dissatisfaction with the situation, I felt judged, unheard and unsupported.

I had also experienced unusual facial numbness in September which had resolved by early October. You told me that I should cancel the appointment with the neurologist so that he could see people who needed to be seen. I was scheduled to see him the next day. Your comment made me feel devalued. I decided to go anyway because I know that the onset of progressive neurological conditions can be subtle.

As I am currently entering an early menopause and inevitably getting older, I want to have a supportive partnership with my doctor. That day I realized that it wasn’t going to be you.

I do understand the stresses of running a business as well as the challenges in the health care system. These are the same reasons I left it behind. I also hope that you consider that your patients may also be under complex stressful situations and it is important to create a safe place where it’s okay to be vulnerable.

Thank you for continuing to provide quality care to members of our community. I wish you well in your practice.