With my medical diagnoses, as in life, the third time really is a charm

Magnetic Resonance Imaging / Résonance magnétique

Magnetic Resonance Imaging / Résonance magnétique (Photo credit: www.cihr-irsc.gc.ca)

When Goldilocks tried that first porridge it was too hot, the second was too cold and the first was just right.  The same can almost be said about my experience talking to neurologists over the course of the last few weeks.

When this all started about a month ago I went to my primary care doctor who sent me to neuro doc number 1.  There are two schools of thought in medicine; paternal where the physician dictates a course of action to a patient who dutifully follows it and fraternal where the physician and patient work together.  Given my huge problem with authority figures (wonder where I got that?) the former just pisses me off.  Neuro doc number 1, was absolutely firmly in the paternal camp.  She told me, “You have had two seizures therefore you have epilepsy.  You will get bracelet, you will wear it.  You will fill this prescription and take it.  You will refrain from driving, biking, swimming, taking baths, climbing trees (seriously, what am I? 10?) or ladders.  Avoid stairs and escalators if you can.  Sleep with a mat next to the bed.  Go directly to epilepsy jail.  Do not pass Go!  Do not collect $200.”  Ok, she didn’t say the last part but you get the gist.  Not only did she talk to me like an errant child but she scared the crap out of me.  I am already scared, I don’t need more fear from my health care provider.

Neuro doc #2 didn’t really see me officially but is someone I know.  He didn’t mean to scare me as much as he did, he just wanted to make sure I went ahead with certain tests that I had been blowing off (but the MRI and MRA are scheduled for next week and I have a host of other tests over the next few weeks.  Yes, I am moonlighting as a guinea pig).  He told me that I had to get the MRI & MRA to rule out certain things one of which scared me so much I am not even going to tell you what it was but I am pretty sure I don’t have it.

Meanwhile, I have been reflecting on my symptoms. Communicating is very important to me and it has been a challenge a lot this year.  Sometimes, I cannot find the right word, a problem I never have, other times I can’t speak at all.  I had thought this was laryngitis — and some was — but when I have that I can whisper, when I have this I cannot.  (Good news on that front, can’t talk for whatever reason?  There’s an app for that!  I have Speak it!  on my iPad now.)  Then I stared having seizures and then headaches and now some strange visual thing that only impacts my left eye.  None of this is good or normal.  Time for another doctor.

Enter Dr. Rhanni Herzfeld.  I told her my history and what’s going on now.  I explained, as best I could, my long health history and told her about all the concussions.  She said there just isn’t enough information to properly diagnose me with epilepsy or anything else.  She said she wants to run the battery of tests that are now all scheduled before doing that.  She is really kind and took all sorts of time to talk with me.  She didn’t lecture me on all the things I shouldn’t do or make me feel like a freak of nature.

I may be back at square one but compared to where I was earlier in the week, square one is not a bad place to be.  I have found porridge that is just right.

Health status update

Deutsch: MRT einer Hirnmetatase eines Bronchia...

Deutsch: MRT einer Hirnmetatase eines Bronchialkarzinoms (T1 nach Kontrastmittelgabe) (Photo credit: Wikipedia)

First of all, thank you to everyone who has been so supportive and nice throughout my most recent health crisis.  It means the world to me and inspires me to be really careful about this.

This has been a very strange few weeks.  In case you don’t know what happened, about a week ago, I had a grand mal seizure while walking down Wisconsin Avenue.  What I remember is thinking about what I wanted for lunch (Thai or Italian?) and the next second, a paramedic was trying to convince me to get in his ambulance.  As it turned out I had just had a grand mal seizure and my head was bleeding, my knee was the size of a football and I had bitten nearly all the way through my lip.  When I saw all the blood on my bag, I let them immobilize my head/neck and bring me to the George Washington University Hospital.  If you are wondering why I keep repeating what happened, it is because I am still trying to wrap my head around it.

If this was the first time this happened, it would not be as big of a deal but it isn’t.  In 2008, this happened when I was at work and it scared the crap out of my coworkers.  Ever since that, I have described that experience as the scariest of my life.  Then I remember being really sick and then waking up on a stretcher.  The paramedics then asked if I knew my name and I replied something like, “F*&% you!  Of course I know my name!”  Then I realized that I didn’t, which is what makes that so scary.   In February, I had another experience like that.

So last week is a lot like 2008 in that I had been pretty sick before the seizure.  For about a week I was not able to eat or sleep, creating conditions that were a lot like 2008 when I was working all the time and had also come down with a stomach virus.  My hunch is this seizure was caused by low blood sugar.  No, I don’t have diabetes but I have a terrible habit of not eating every day and low blood sugar has been linked to seizures.  For the record, I am making a point to eat every day and I start with breakfast.  I promise to do whatever I can to make sure I don’t have any more seizures.  I do not want to put anyone I care about through the experience of seeing that.

What has happened since the seizure?  I have spent a lot of time in doctors’ offices.  The neurologist I saw diagnosed me with epilepsy, due solely to the fact that I have had three seizures (according to her, two or more qualifies me for this diagnosis).  I still have to get an MRI and MRA on my head but the EEG was completely normal.  She had to alert the DMV so I am not supposed to drive for the moment.  If I go six months without another seizure, I can get my license restored (fingers crossed on that).  Because I believe in doing my due diligence, I am getting a second opinion but in the meantime I am being super careful.

My other main health problem has been anemia and my hemoglobin has been down.  My new primary care doctor prescribed iron and I am taking it.  Even my insomnia has been better.  Since the seizure, I have been sleeping without any medication.  At least twice this week I slept more than eight hours.  Seriously, I don’t know how this has happened but it has been wonderful.

Long story short, I am really fine.  I know how worried people were when they heard I had a seizure and I would be lying if I said it did anything but scare the shit out of me, too.  I have a favor to ask, I am not going to text people health updates and I really need to have some conversations where this is not mentioned at all.  I hope you understand and know how strange that might seem — I am the one who told everyone I have ever met.  My normal reaction to things is to freak out and that’s why I told everyone, also talking about it made it easier for me to accept.  After the initial freak out I usually want to forget the whole thing happened.  That’s where your support has made a difference that might not be totally clear for some time.  By asking me about how I am, you have prevented me from ignoring my problems.  Instead of doing the whole ostrich thing, I am doing the right thing and taking better care of myself than I have in years.

Next steps?  I have an appointment to get an MRI/MRA (with and without contrast) on Tuesday morning.  I am seeing a second neurologist on November 1.  For the record, I am not disputing the first person’s diagnosis, I just don’t like her plan to deal with it or her propensity to talk to me like I am an idiot.  I am also going back to see my primary care doctor and an orthopaedist (follow up for the knee issue).  Both doctors are wonderful.  On a related note, the tachycardia I developed from the seizure has gone away (explanation: the pain from the seizure caused it).  Some of you might know that I was advised to have the back surgery I had done a few years ago redone but that can wait a bit.  So it’s good news all over the place.

The next time I will have news will be either Tuesday (though that’s not likely unless my tests are really strange, which they won’t be) or in early November.  If anything happens before then, I promise to post it here. A la prochaine!