Thursday, December 23, 2010

Misdiagnosis and Letter to Old Neurologist

A few people have asked me how I was even diagnosed with epilepsy to begin with. I am still trying to figure out the full answer to this question. However, I think the main reason is because the general neurologist that misdiagnosed me misread my (multiple) EEGs. He read my normal EEGs as having extensive seizure activity.

Why the confusion?

According to the epilepsy specialist I eventually saw, my EEG results showed that I was drowsy during the tests. People who are drowsy have different brain waves than people who are wide awake. If you've ever felt that your brain was asleep, it probably was! Unfortunately, the general neurologist who misdiagnosed me incorrectly interpreted the drowsy brain waves as seizure activity.

To be fair, the general neurologist did ask me about my medical history before officially (mis)diagnosing me with epilepsy. To be equally fair, I answered his questions as accurately as possible. I explained my entire medical history (asthma, allergies, eczema, bruxism, IBS, PCOS, sleep apnea, migraines, tinnitus, thalassemia minor, etc.). I also told him about my ME/CFS, including the neurological problems associated with it (brain fog, memory problems, attention problems, insomnia, etc.). I can only assume he believed my neurological symptoms to be from seizures. How wrong he was.

Following is an edited version of the letter I sent to the neurologist that misdiagnosed me with epilepsy. As I mentioned in my last post, I don't expect a response; however, I think the doctor needs to understand the danger of incorrectly diagnosing someone. 


Dear Dr. S,

As you have probably already learned, Dr. D, epileptologist at the C Epilepsy Center, has examined my case. After reviewing my medical history and EEG results (three from your office and one ordered by Dr. D), he has determined that I do not have epilepsy.

After living with the epilepsy diagnosis and having been on antiepileptic drugs for nearly a year (and suffering from side effects, including an anaphylactic reaction to Trileptal), this news came as quite a shock. While I am thrilled and relieved that I do not have epilepsy, I am trying to understand how I could have been so wrongly diagnosed. According to Dr. D, all of my EEG results appeared normal and my medical history did not indicate epilepsy. He asked me why an EEG was ordered in the first place.

I have since stopped taking Keppra and Topamax. Many of the symptoms I was complaining about -- extreme fatigue and weakness, difficulty going up stairs, twitching, difficulty thinking -- have improved dramatically. It appears that medication side-effects were the cause of many of my problems.

Because of the diagnosis, I was prescribed unwarranted medications, had unnecessary medical appointments and tests, experienced a life-threatening event resulting in hospitalization, and missed long periods of work. My husband also paid a price; he took off work on multiple occasions to drive me to medical appointments and had to undertake additional responsibilities at home because I was too exhausted to help. All of these events took a physical, mental, and financial toll.

I am writing because I want you to understand that this misdiagnosis greatly disrupted every aspect of my life for the past year. I shudder to think how much more suffering I would have undergone had I not referred myself to an epileptologist. I hope you will consider my case a learning experience, as I do not want others to endure what I have been through. Perhaps, taking additional classes on reading EEG results or referring possible epilepsy patients to a specialist for a second opinion would be a good idea. Familiarizing yourself with medication side effects might also be beneficial. Patients would respect you more for proactively looking out for their well-being.

I would be grateful for any response you might have regarding my misdiagnosis. I am trying to comprehend the last year.


dominique said...

Excellent! I thing your letter is perfect! Merry Christmas my friend. (and a seizure free one at that!) :-)

cinderkeys said...

You did a good thing. I hope it helps. I wonder if you'll ever get a response, though. Insurance companies tell people not to apologize, as their apologies can be used as an admission of guilt in a lawsuit.

kitty said...

Hey Alyson! Your letter is great - to the point but not aggressive or nasty. I'm very impressed, well done you! And just think now you will start 2011 with NO epilepsy! :-D I'm excited for you. Kitty xxx

p.s. of course you can add my blog to your list! I am honoured hehe! When I update my blogroll I will be adding yours, I love your blog and your style of writing, so open and honest, very refreshing x

upnorth said...

Wow, what a scary and frustrating thing to go through. I'm glad you're doing something about it by writing the letter. It's very well writen. So how is your M.E. after all this? Worse, better or same?

beatricemdfr said...

Well done! Sorry you had to go through such a hellish year.

alyson said...

Thanks so much, everyone! Last year was tough, so I'm hoping 2011 will be a better one.

upnorth, Thanks for asking! I'll be sure to write my next blog entry about how I'm doing.

Janis said...

Great letter. Wish you could get compensated in some way financially for what you went through. I guess we also have to take personal responsibility by searching out second opinions whenever drugs or surgery are involved. But that is hard to do when desperate and sick! I hope you get a response with AN APOLOGY.
The neurology field seems especially mired in confusion. My friends daughter has been told by 3 doctors that she has MS and another three that she doesn't have MS. She has gone to the best hospitals and done a gazillion tests. It's all so bizarre.

Anonymous said...

This is so shocking, Alyson, and I'm so sorry to hear how much you suffered from the misdiagnosis. Your letter is absolutely superb, though, and I love how you got a veiled dig in at the end about classes on reading EEGs! (Also, I've come by to visit you a number of times, but this is my first time feeling well enough to leave a comment.) -Jocelyn

alyson said...

Hi Janis - So far, no response from the neurologist. I'm not really surprised, though. I'm sorry to hear about your friend. Has she gone to general neurologists or to neurologists that specialize in MS?

Thanks for visiting, Jocelyn! I'm glad you've been able to drop by a few times.

jenji said...


Just leisurely reading through some of your posts.

The doctors tested me for epilepsy as well, as I was having two different issues, which looked very much the same:

1. passing out, as in no awareness while out- turned out to be orthostatic intolerance/POTS. I very rarely full out drop from this anymore,although it does flare somedays where it's more than obvious I need to be flat. Period.

2. completely dropping, appearing to faint, into a spastic seizure seemingly unconscious, with eyes fluttering, neck jerking and whole body jerks- turns out I have narcolepsy with cataplexy

Maybe your EEG was showing microsleeps? If I'm not mistaken, microsleeps can show up on an EEG and to a neurologist who is not specialized in sleep medicine it could appear as a type of seizure, as cataplexy is in fact technically a seizure in itself. Most seizures one does not retain conscious awareness, however those with cataplexy know what's happening, they just can't control their body to move so they appear passed out or in a violent seizure depending on your strain of luck.

I had 3 sleep studies and the MSLT is what really suggested I might have narcolepsy. Then I elected to skip the lumbar puncture for CSF analysis to confirm for narcolepsy w/ Cataplexy (bc you can have N without cataplexy too) as those with N w/C will have evidence in their CSF. Instead, I had genetic testing done and sure enough, I have the gene for narcolepsy with cataplexy.
I've had these seizure type cataplexy episodes quite a few times, however I had a doozy back in 2009 because I was pushing myself too hard with grad school and teaching wherein my body finally said: enough, jenji. Slam. I was totally limp on the ground and my body kept jerking as if my brain was trying to reboot over and over again; I was aware and I was annoyed, but I looked unconscious. My friends who were with me at the time (along with the entire audience from the theater that day) said it appeared just like a seizure, however I told them everything they were saying during it and so on so I could reassure them that I wasn't completely helpless; although, I suppose I was for about 5 minutes. lol Quite foggy afterwards and I had another short one on the way home, but then I was fine.
These episodes seem to happen only if I'm REALLY pushing myself beyond what my body is willing to do, which given CFIDS/ME some days it wouldn't take much, but I'm no longer working that schedule, so it's been a lot better, plus I'm no longer taking high dose Adderall to keep up with the "normals." That stuff was poison. The last thing I needed to be doing was burning my adrenal glands even more so with amphetamines. So I took a leave of absence because my body wasn't having it and I couldn't retain my scholarship if I didn't teach at the same time. Taking grad classes and teaching grad classes is just too much for my body. I'm so frustrated.

Also, while I'm thinking of it, I read one of your posts where you talked about chronic migraine syndrome. I was diagnosed with the same and it turned out that another doctor, who was much more proactive, ran tests for my clotting times. It turns out I have antiphosphilipid syndrome, which is basically stated: thick, sticky blood. That was the cause of my migraines. I went on blood thinners immediately and quickly had relief. When I started I was having migraines almost everyday and then it went down to a few a week and now 15 years after THAT diagnosis I only take a baby aspirin per day and I will occasionally get a migraine with my period. This condition can often go hand in hand with a lupus diagnosis. Not always, but it can; many with lupus also test for this. Those with this condition are at a higher risk for blood clot, especially if they are taking estrogen based birth control pills.

Just thought I'd share again.


alyson said...

Hi jenji - Thank you for sharing your experiences. I'm sorry you've had such a difficult time. It's amazing how many of us have so many issues with multiple body systems. Ugh. I'd love to know what it feels like to be a normal, healthy person!