Red Riding Hood and a Path Through the Woods

I saw the neurologist this week (I’m going to refer to her as Red Riding Hood from here on out).  After the examination and describing my symptoms to her and the neurology resident, Red Riding Hood asks me if I am having vision problems.  Intermittently, I do have trouble focusing and today is one of those days.  She has noticed my pupils are large and that they are slow to adjust when she shines light in my eyes.  I describe to her my discussions of this issue with my eye doctor over a year ago.  She asks me if I have been having digestive issues and if I have low Vitamin D and ferritin – and I do! This has been a consistent issue. I tell her about my malabsorption and other problems and she says “aaaahhhhhh….hhhhhaaaa” like this is what she suspects I might say.  She then tells me that she suspects I am experiencing autonomic dysfunction caused by a tumor somewhere.  She doesn’t think it is the pituitary tumor; it is likely whatever the NCI is looking for.  She thinks the smoke smell likely is a partial seizure disorder and prescribes an antiseizure medication and orders the EEG which I will have in a couple of weeks.  And we will go from there.  She asks if I have any questions and I don’t really have any, because I am completely taken off guard and don’t even know what to ask.

As I walk back to my office, I call my husband to fill him in and tell him the appointment was kind of mind blowing. It is not often someone is able to explain a huge number of my symptoms in one sitting like that.  The other amazing thing we talked about is how different doctors appointments are these days relative to even 18 months ago.  If I would have gone to a doctor 18 months ago complaining of smelling smoke, I would have been laughed out of the office.  Now, instead of being told I am just a head case, I really feel I am being taken seriously. Now, I don’t feel like I am being laughed at – I hear real concern.  It puts my mind at ease, because I am obviously concerned too and it is reassuring to feel someone who might be able to help actually gets it.

But as I walk and we talk, now I have questions. So maybe this can explain the symptoms, but what does it actually mean?  What exactly is causing the autonomic dysfunction?  Is this serious or not? Is it reversible? Ah Google.  How I love and hate you.  I tortured myself reading everything I could get my grubby little fingers on for two days and then realized I had to stop.  No matter what Google tells me, it doesn’t change the main facts.  Whatever is going on inside my own body, whatever is spitting out peptides, hormones, causing reactions and symptoms, is going to continue on its merry way whether I am sitting inside on my computer reading every study on paraneoplastic syndromes published since 1975 or sitting on a patio in the sunshine having a mojito.

I am smelling smoke. My vision is blurry.  I am tired and have a whole host of other symptoms.  But I am ALIVE.  And I am not on my own anymore, figuring this stuff out with just Google by my side, fighting to try and get a doctor, any doctor, to listen to me.  I’m not out of the woods yet, but I now have a team of doctors, my family, and a whole set of fellow patients making the journey with me. And it is really fucking sunny today.  Time to put away my computer and focus on living today.  Red Riding Hood can worry about the smoke for now. 

 

 

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Where There is Smoke….

Since the end of February I have been experiencing a new and unusual symptom.  I started randomly smelling smoke every once in awhile, usually at night while watching TV.  I would ask my husband repeatedly if he smelled it too, but it was always just me.  It never lasted long, but it was odd. I have two teenage stepsons with rooms above our TV room and I even wondered if one of them had started smoking on the sly.  But then I started to notice the same smell in my car driving to work, in my office, in meetings.  This was not a teenage experiment with cigarettes – this was me.

I reached out to my PCP, Yoda, concerned that maybe I had started to get some sort of sinus infection. My nose was kind of stuffy and I was having trouble breathing out of it, but this had sort of been the case for a few years.  I saw an ENT who took a look inside and didn’t see any sign of infection but decided to get a CT scan of my sinuses just in case.  My sinuses looked good on the CT scan as well.

What the hell.  Smelling smoke, I learned the hard way, is one of those symptoms you don’t want to Google.  Nothing good comes up, except sinus infection.  And it didn’t look like I had a sinus infection.  I got really pissed off about this.  I had made a deal with my body:  I would keep working hard to fix her outstanding issues as long as there were NO NEW PROBLEMS.  I had diligently chased down and dealt with an extremely long list of problems in the last 3+ years.  And I was still chasing down a small list of problems.  This was manageable – as long as my piece of shit body and I stuck to the agreement.  NO. NEW. FUCKING. PROBLEMS.  PLEASE.  Just for six months.  A year.  Just let this stop for a little while.

My appointment at the NCI occurred while I was waiting to see the ENT for a follow-up and so after covering the NET related symptoms, they asked me if I had any other symptoms that they should know about.  I hesitated for a second – because I don’t even want to acknowledge at this point it could be another problem and I also worry it makes me look insane – I say, “well, I smell smoke sometimes.”  And I really feel like that kid in “Sixth Sense” when he says “I see dead people” at this point.  It’s a weird symptom!  But by the time the NCI appointment rolls around, I have been smelling smoke for 7 weeks and it is getting worse.  I decided to keep a “smoke journal” for a few days, just so I could relay accurate information to whatever doctor was going to ultimately sort this out.  So, I took note of every time it happened, what I was doing when it happened and how long it lasted.   Writing it down made it clear it was happening for 1-2 seconds at a time, about 20 times a day.  I did that for two days.  It stressed me out and I stopped taking notes.

The oncologists at the NCI tell me I need to go home and get a brain MRI and an EEG and send it back to them.  They tell me this two times.  As we were leaving the appointment, the oncology fellow grabbed my arm and told me to get the tests done  as soon as I got home a third time.  I get it, I hear you, I will get the tests done.  They speculated that it might be a partial seizure disorder, they have seen this in one of their patients.  They did try and reassure me that this could be a result of having had neurosurgery.  But please get the tests done as soon as you get home anyway.

It turns out I can’t get the EEG without a neurologist and getting in to see one is going to take time.  But I did get the MRI done.  The good news?  It’s very good news.  There is not a big ole brain tumor in the middle of my frontal lobe causing the symptoms.  There are a “few nonspecific foci of FLAIR hyperintensity in the subcortical white matter of the frontal lobes” which a little Googling tells me sounds like the kind of thing that can show up on an MRI for patients with seizure disorders.  But honestly, I have no clue if that is significant and the radiologist said it could just be a sign of small vessel disease and I have no idea if THAT can cause these symptoms.  Hopefully, the neurologist  has something to say about this.

Oh yeah, there was one other thing that showed up on the MRI:  “Asymmetric soft tissue prominence along the right aspect of the pituitary gland with minimal deviation of the pituitary stalk to the left. This may represent an adenoma.”

There might be another pituitary tumor.   I looked at the MRI images, and my right side does look a lot bigger than the left.  Is this post-surgical changes?  Or another fucking tumor?   I immediately get in touch with the Wizard.  He doesn’t think it sounds like I have Cushing’s again, but does send me 8 cortisol tests to complete, just to make sure, and tells me to send him the MRI images.  And he sends me some reading materials that suggest other patients with pituitary and/or thyroid problems have reported smelling smoke as well.  And I have – very recently – started breaking out in acne again and getting very weepy.  And I am feeling fatigued.  I cut back my hours at work a little to try and get more rest in.  All of these symptoms were initial signs of Cushing’s last time.  But maybe its a coincidence?  Maybe I am in denial?  Only time and testing will tell for sure.  I know the drill.

Motherfucker.  I am so mad at my body.  I feel so betrayed by my body.  I hate my body for doing this to me, over and over.  For a long time now, I have started to see my body as a separate entity from myself.  This allows me to get very angry at someone for doing this to me without directly blaming myself.  Not saying this is normal or healthy.  Only saying it works.

I still need to see the neurologist and hopefully get the EEG – that happens next week.  Hopefully between the neurologist and the Wizard we can figure out why I am smelling smoke and if indeed there is another pituitary tumor or something else going on.