Neurologist Appointment

Amazing-Weird-Surreal-Photos-by-Sarolta-Ban-10

Sarolta Ban

Generally when meeting a new doctor I prepare a mental list of questions and concerns for discussion. I rehearse the list  countless times but when faced with the actual appointment I forget in large part what it was I intended to say. This time I thought to hell with it I am just going to write a list of instructions for myself. That’s right actual instructions. I tried to keep it brief 1/2 a page or so. My appointment today has left me in a state of turmoil. I was diagnosed with Epilepsy by Dr. R in the local hospital. Dr. R seemed certain of my diagnosis. Sam was present during all my appointments and he was under the same impression. I was transferred (or so I was informed) to a specialist in another hospital Dr. G so I could be evaluated for surgery. I even underwent the week long surveillance in hospital. Dr. G was not forthcoming with information on my condition. Sam also attended my meetings, we both asked questions and very little was ever revealed. During my week long stay I had 2 seizures the nurses monitoring me informed me that the seizures read on the EEG but my doctor later told me that the EEG had not picked up any unusual brain activity. She also discredited the previous EEG analysis of Dr. R (he had told me that there was activity as had the nurse administering the test). I asked her point blank could I have something other than Epilepsy and bizarrely she said no there isn’t any other explanation. When I told her I wanted to seek psychological treatment for Depression she advised strongly against it.

*

I requested a change of doctors in part because of communication difficulties. I just met with my new Neurologist will call her Dr. S and lo and behold she tells me I have PNES (Psychosomatic Nonepileptic Seizures) that could be the result of a Dissociative Disorder. Dr. G and Dr. S work together and I get the impression that they are good friends. Dr. S has access to all of Dr. G’s clinical findings. Not once did Dr. G ever tell me I had PNES. Sam accompanied me to the meetings to act as a translator and not once did he ever hear her say any such thing either. I am pretty sure we wouldn’t forget a thing like my diagnosis, at least he wouldn’t forget it. Now I am told that I need to go to a psychologist for treatment. Why on earth did Dr. G advise so strongly against it in the first place? If I had PNES and she knew that to be the case why didn’t she want me to receive treatment? I still receive notices every time I have a doctor’s appointment that I am supposed to be keeping an Epilepsy journal, I should know because I received a doctor’s appointment today reminding me to keep my journal. Why when I went to the emergency room did they mention Epilepsy when I apparently have no such diagnosis? It is all a little perplexing to say the least. I could have started treatment for PNES years ago and would have done so if only they’d clarified my diagnosis. Encase you are wondering/confused it was not Dr. S who rediagnosed me she was just reporting Dr. G’s diagnosis. Needless to say Dr. S did not believe me when I told her that Dr. G had never informed me. Had it just been me visiting Dr. G I could actually accept that I might have misunderstood because of the language barrier. I could even have accepted that I forgot because god knows my memory is horrific but there is just no way Sam would have missed it. Dr. G not only didn’t inform me of my diagnosis she also left me completely stranded. When I went to the psychologist I told them I had Epilepsy (it must also be in my records incorrectly) and so they didn’t consider Dissociation at all because as far as they were concerned my disassociation was explained by the Epilepsy. No telling what I might have gotten diagnosed with had I underwent an evaluation! God knows I have already been given a shit load of dangerous drugs.

*

As for how I feel about the diagnosis? Dr. S says that PNES seizures can look nearly identical to Epileptic seizures and you can’t always tell the difference without an EEG. If that’s the case then it is a plausible explanation. I feel utterly humiliated. I have told my friends and family that I have Epilepsy. I joined an online support forum. I identified with the disorder and it explained so much of what I was experiencing. There is an element of disbelief still but I will get past it and work with this new diagnosis. I am sure I will understand/accept more after I do some research. I am excited that I have treatment options whereas before medication wasn’t working. She told me over and over that PNES doesn’t mean I have fake seizures and that I don’t have any conscious control over my seizures just as I didn’t when I thought had Epilepsy. Of course I understand it intellectually but emotionally it will take a while. I am also embarrassed that I didn’t figure it out by myself (well I actually did consider that I might have some type of Dissociative Disorder). The thought that I might, with treatment, be able to learn again is just outstanding. I remember in high school during exam day I aced all the tests, top scores but I couldn’t remember having even taken the exams. The thought that just may be I could have that brain, that I might have that data stored in my brain, data that I might be able to recover is amazing. Even if I can’t recover lost/misplaced data, if I could learn again, make memories again that would be a dream come true. In the course of writing this I have already become more positive. Treatments going to be a bitch though I imagine I am going to have to poke around at all the mutilated ouchie bits. I am also a little pissed at Dr. G and Dr. R whom I actually did trust. While I am glad Dr. G did a lot of testing what the hell was she thinking not telling me about my diagnosis and advising against the only treatment that might work? I just have no idea.

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27 responses

    • Sam has shared some research with me coming to terms with the new diagnosis is not nearly as challenging for me as coming to terms with the negligence. Why didn’t Dr. G ever mention PNES? Why did she discourage me from proper treatment? According to Dr. S Dr. G had made the diagnosis a long time ago. Did she really not think it important enough to tell me about? I even asked her about it point blank and she still didn’t see fit to mention it. Dr. R I genuinely liked and trusted, both Sam and I did and he is in large part responsible for the communication problems I had with Dr. G because he told us one thing and her another, which is why she could never understand me when I made reference to him. In fact when I asked him again about it he verified what he had told me earlier and insisted that it was Dr. G who was mistaken. He even told me than a lot of the patients he referred to Dr. G had lodged complaints. Only I’ve read now what he wrote to Dr. G and it does not correspond with what he told us.I could have understood a difference in opinion and had he written to her precisely what he said to me I might have gotten a second opinion such was my trust.

      The new diagnosis though scary in some respects as I mentioned is at the same time a relief because now at least I know I have my physical health. At least now I know that my memory isn’t irreparably damaged and that it can function normally with treatment, unfortunately my faith in the medical community has taken another nose dive. So for me that is the hardest part having lost so much faith in medicine, fortunately I still have faith in myself and fortunately I am still willing to try treatment for PNES because if this is the right diagnosis (and I truly believe it could be) then the treatment should work if I commit. I am grateful Sam was present during my experience had he not been there I would have lost faith in myself as well and he might have lost faith in me as well because the whole situation is just very hard to believe if you weren’t there.

      • I don’t blame you for the issues with medicine. My mother had three unnecessary operations because of mis diagnosis. I had hormonal problems in my early twenties which the doctor said don’t worry about, years later a more knowledgeable doctor told me I should have had tests because those symptoms could mean a tumor on the pituatry gland, which among other fun things could have blinded me…the symptoms were gone so she said it wouldn’t have been that, but that the doctor should have known better and had me tested in case. So yes, its can be a bit of a gamble getting medical advice…I guess no doctor can be expert on everything….

      • Helen I sympathize with your mother because my own mother has been through some ordeals herself. First there was the Hypothyroidism issue. Thyroid problems run in my family and my mom was having significant health concerns that pointed to Hypothyroidism but they refused to investigate. Eventually my mom became extremely ill she’d wonder into traffic in a stupor. She saw a new doctor they checked and she was on the cusp of falling into a deadly coma. The 2nd time she was having extremely heavy periods, I mean dangerously heavy, they gave her iron pills and investigated no further. She was bedridden for a while finally went into emergency after massive blood loss. Not only did she need a blood transfusion but they discovered she had 21 benign tumors, one of which was the biggest tumor the on call doctor had ever seen. She had to have an emergency hysterectomy. She almost bled to death. I am so glad you are well Helen. I really have no faith in medicine (save for like setting broken bones and giving stitches) they are so quick to write patients off as head cases. Sam suffers chronic pain but they do not investigate chronic pain in males in Sweden they just say suck it up and fuck off literally.

  1. This is a lot to take in, but I am glad that at least you know where you stand and how things are going to go.
    It is very sad to hear that the previous doctors misstreated you in every possible way, shame on them -_-

  2. In a way this is good new Yves, it’s also crappy that the doctors have once again failed a patient. As you know I was on seizure medication for 4 years and it made me worse. Then they diagnosed me with Pseudo Seizures, which is another name for Psychosomatic Nonepileptic Seizure. The specialist who diagnosed me curled his lip up when he told me and ushered me out of his office with a passing remark of, “It’s all in your mind.” It’s only taken 27 years for me to finally get some idea and that’s because I read your post. Thank you and I hope you find a way out of this now. I think doctors believe they are above us mere mortals and keep things to themselves to show their superiority. the old, I know better than you, you’re only the patient. Are you still on the medication? If so and they’ve finally said you don’t have epilepsy then the drugs will only make you worse. I wish you a speedy recovery Yves.
    Cheers
    Laurie.

    • I am not on medication. I was and I tried quite a number of anti-seizure drugs. I’d also tried quite the variety of psychotropics while in the states and nothing has worked on me favorably. Then again I personally think psychotropic drugs are bollocks and I know people will disagree. I watched a very disturbing documentary on psychotropics. That said if they have something specific for my diagnosis that I haven’t tried I will still give it a skeptical researched go. I am happy to have treatments options. My doctor wasn’t that crude in presentation though she was condescending and she did have me first talk about how I was feeling before telling me, so she sat there scoffing because of course she didn’t believe anything I was saying. That is the scariest part to me with this diagnosis I will never be eligible for medical care again. If I should actually get sick I am totally screwed because no one will believe me. Thanks Laurie are your pseudo seizures gone?

      • It’s a minefield out there when it comes to medication, Yves. I took them for couple of years, small doses but they still messed with me and caused seizures, go figure. My pseudo seizures have never gone away, they manifest when I am under stress and are exactly like psychosomatic nonepileptic seizures. No loss of consciousness, just extreme arching, muscle spasms, unable to speak etc. that’s why I had to slow down online for a couple of weeks, they were pretty full on. Besides I’ve had some trauma to the brain over time and that doesn’t help neither. Yet the doctors don’t believe me and send me for endless tests that show the same thing. It’s crap. I think they stop listening after you describe the first symptom. Take care Yves.

      • The thing is some Epileptic seizures don’t show up on EEG’s either because they occur deep in the brain. You have trauma both psychological and physical some of your seizures could be Epileptic people do have both. I mistrust medicine so much any time I take anything it seems to trigger PNES. Though I can say one of the Epileptic meds I took was absolutely fantastic for my breathing I could run and run strangest thing lol I don’t seem to lose conscious either but I also don’t have seizures just with stress I have them when I am happy and relaxed as well. I get sort of annoyed when they tell you what you are feeling. Do your pupils dilate? I look like I’ve taken shrooms after.. I think it is mostly guess work when it comes to the brain

  3. That is just effed up. I would be really mad….but I hope hope hope that now you are finally on the right track. With all your memory sx, perhaps this is the right course. Did they give you a psychologist referral?

    • I was pissed, confused as well I am trying to let go of that anger so I can move forward. I just can’t see myself going to a medical doctor in the near future for anything other than like a broken leg or something because they really can’t handle anything beyond first aid

  4. Sounds like doctors aren’t communicating with one another as they should and unfortunately, it has been at the expense of your health. I hope you will be become more proactive about your health care. Listen to what your “gut” tells you. It is usually never wrong.

  5. God, you must not know who or what to trust right now. I hope you’ll find a way to navigate all of this, and that you find your way to the treatment that will actually work for you. Like gimpet says, hopefully you are on the right track now. I really hope that’s the case!

  6. Can you register a complaint with the governing body for doctors? The misdiagnosis was extremely serious, and someone in authority should be made aware of this. Especially since the doctor was communicating two completely different stories.
    I hope that with the new diagnosis, you can move forward. Trusting the medical community will be difficult (is there a doctor rating site for your country?), and continue to document what drs. are telling you so that you can judge if they are on track.
    I wrote a letter to the Board of Surgeons (or whatever the governing body was called) over the behavior of a doctor and the diagnosis he delivered. It didn’t help my health, but I felt better for having called his attitude and procedures to the attention of the licensing board.
    I always take notes (and like you bring an agenda/history) as my memory isn’t great. That’s how I discovered that a doctor was telling me to take medication one way, but the prescription was written for completely different dosing!
    I hope that you regain your ability to learn — I know how losing that feels and it ain’t nice. Hang in there!
    And, don’t be embarrassed by telling folks that you had epilepsy. As far as you knew, you did. It was suggested that I had fibromyalgia (as a way to bundle my various health issues), but I don’t. I was told I was bipolar 2 in 2011. Seeing a psychiatrist, finally, to get a correct diagnosis. I’ve told folks I had both of these health issues — and I was only going on what I had been told, and how it sorta fit the situation, explained some things. But not all, which is why I remained skeptical and on the edges of the those communities.
    Good luck! Sending good thoughts.

    • I don’t think it would be effective anytime I’ve tried to address a problem they suddenly are unable to understand English. Either Dr. G is dense is a box of rocks or she is putting on quite a show of it. If I asked her for her favorite color she’d answer 3 or table or something along those lines. Sam has tried talking in Swedish to her as well but you really can’t get through to her, it is infuriating talking to her. Her colleagues completely support her when I brought up some issues with Dr. S she was extremely condescending you have memory problems what the fuck do you know? That was the attitude I’d rather just not see them again. The anger I feel isn’t healthy and if I went after them I’d would only humiliate myself and get more frustrated. It would be different if I had physical recordings of the conversations that I could review but I don’t.

  7. I can understand your frustration, disappointment & anger with the doctors – after all they have been responsible for disrupting your progress – but it’s clear that they’re not worth the trouble.
    At least you finally have an answer, and, even better, new possibilities.
    You shouldn’t feel any shame over the epilepsy thing – that’s not your fault at all. Understandable to feel humiliated, but not your fault.:)
    Overall, I am happy about your news. I was so worried that you’d have to have surgery or something drastic – this is a good outcome (in spite of the incompetent doctors).
    Hugs xoxo

    • Dr. G actually told me that therapy wouldn’t help my seizures when I mentioned therapy to her (since cognitive behavior therapy is the treatment for PNES is a very curious thing to say). Sometimes I wonder if my honesty about therapy didn’t cause her to discontinue the investigation and label it a mental issue. At the same time though I see how PNES fits and believe that I do have PNES. I figure I can pursue this, work with this and then see how I feel. The truth will reveal itself and at least now I have a focus..

      • It’s a pity that you can’t haul their arses over hot coals, but let’s face it they have wasted enough of your time. Focus on getting better now. At least you have a new avenue of options available to you. X

  8. Pingback: Proof | Curious Flowers

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