Not the update I thought I’d make

“No one is so brave that he is not disturbed by something unexpected.”
–Julius Caesar

I meant to make an update right after my last appointment with the rheumatologist, but it was mostly uneventful, so I kept forgetting to.  The long and short of it was that a) the enbrel + mtx hadn’t kicked in yet and b) I was having huge (6×8 inches) injection site reactions that lasted all week long.  The PA told me to take a double dose of my allergy meds before my next shot, as I might be developing an allergy,  and to call in & let him know if that worked for me.  And also to watch out for any numbness, tingling, fevers, infections, or coughs in the meantime.

I was all set to do just that a couple days later, but I started having cold symptoms, so I rested up for a day or so and postponed my meds, as per usual.  By Friday afternoon I was back to normal, but decided to wait one more day so as to get that double dose of allergy meds in for a full day before the enbrel.

Saturday I woke up feeling all right and planned to take my shot after lunch.  I went over to my parents house and hung out with them, listening to stories about their recent trip to Germany, looking at photos, etc.  As we were packing up to go back home, I started feeling a bit strange, just a bit dizzy.  I thought maybe I wasn’t over my cold after all.  We got home and I took a shower (we attend church on Saturday afternoon, so I needed to get ready).  The shower just made everything worse.  I started to feel discombobulated.  My brain was sluggish, words were slow to come, and my whole left side started tingling like it was falling asleep from a pinched nerve (fingers, toes, calf, arm, face).  I couldn’t tell if my hair dryer was blowing hot air.  I was having trouble looking to my left, though I experimented with closing my eyes one at a time and figured out that I could see in that direction, just not with both eyes open.  I definitely couldn’t make sense of the gear shifts on the car I was supposed to drive to church.  (The others had left before me because I was taking so long getting ready.)  I ended up calling my m-i-l to explain that I wasn’t coming and tried to get hold of my parents for help, but they were in the middle of something they couldn’t get out of.  So I stayed home, in my comfiest chair, and just tried to stay calm.  I dozed off and on.  My parents showed up and fed me toast.  My in-laws brought my kids home to me while my husband attended a meeting.  My parents fed the kids pizza & turned on a movie for them.

The next day I was more coherent.  I called my doctors offices and left messages for them on their services.  I stayed at home and let the kids play while I sat in my chair and pretended to read.  My husband had to work all day, but came back at meal times and fed people.

Monday I got up and felt like a regular person again, thank God.  I was able to feed the kids, drive them to school, and clean up the kitchen.  I talked to the nurse at the rheumatologists office a couple times and the doctor there said that none of this sounded like RA or side effects from my meds.  The nurse at my primary care physicians office said I needed to a) come in immediately and conversely b) the first available appointment was Tuesday at 2pm.  So I made arrangements for my kids to be picked up & watched by my f-i-l and made my way over to the doctors office on Tuesday.  I told my PCP the symptoms I’d had and he made the out loud wish that I’d gone to the ER on Saturday.  I explained my insurance situation: I just now paid off last years ER visit this week, most of it out of pocket because while our local ER is in network, none of its doctors are in network and the hospital where the doctors are mostly in network, none of the lab testing is in network.  It’s terrible. And also: I could NOT drive and I was home alone and the neighbors were all off at birthday parties and barbeques and work.  Ahem.

Anyway, the PCP told me that basically my symptoms lead him in two directions: a) stroke and b) multiple sclerosis.  We had already discussed my family history of stroke and had started me on beta blockers to keep that at bay, but did I happen to have a family history of MS?  Well, yes, of course.  My birthmom had 15 siblings and my birthdad only had 1, but between to the two families we have histories of: breast cancer, lung cancer, MS, rheumatoid arthritis, stroke, heart disease, high blood pressure, high cholesterol, mental retardation, undisclosed mental health issues, ADHD…the list goes on and on. So the PCP starts a few sentences like this: “When dealing with an MS diagnosis…” To which I reply “Are we dealing with an MS diagnosis?” and he states “We still have to do testing, but it’s the best fit for the symptoms you have had and are continuing to have.  We’ll draw blood today to rule out any other issues and do another brain MRI and send you to another neurologist.”  And then he left the room, leaving me to my tears.  Not that he’s a bad doctor in any way, but at this point he could see I just needed to be alone and so he went out to talk to another doctor about me (either I have really good hearing or all doctors offices have really thin walls — also, the other doctor, she agreed with the MS conclusion & further testing “just in case”).  I moved on down the hallway for another blood draw, my second this week.

The MRI people called & said that my insurance required 7 days for paperwork and that I could have the scan on the 26th.  The neurologists office called & left me a message (it went straight to voicemail without ringing, which was weird) that the earliest available new patient appointment was June 16th, which was also weird, as I’m already a patient at their office (though with one of the other doctors – who sees me for my now-nearly-extinct classic migraines).

Here’s the thing: I’ve been through all this already.  Seven years ago I started seeing the doctor for numbness & tingling.  I’d been having it off and on for a while without any other symptoms that I could tell that came with it.  It came and went at random.  I had nerve conduction studies, a brain MRI, cervical scan, blood tests, the works.  I saw a neurologist & she said I had migraines, which I totally agreed with, as I’d been having them for years – the painful kind that tryptins took care of quite nicely.  I went on a beta blocker for a while, but while it worked, it sent my blood pressure so low that I blacked out a lot, so I was told to quit that.  Eventually, through trial and error, we discovered that it was my birth control causing my migraines, and so after my 3rd child was born, my husband got a vasectomy and I went off birth control.  I’ve had a grand total of 3 migraines in the 4.5 years that have followed (and those only after extreme heat exposure), which is nothing compared to the 10 I got per month before that.  But the neurologist never found anything else wrong with me.  She said that my brain scans looked good, with only a couple little spots from the migraines (she was quick to point out back then that migraines produce similar bright spots on MRI’s to MS and that in my case, these teeny tiny spots were migraine related).  My blood tests, though, those had some weird numbers.  The PCP sent me on to the rheumatologist for a second opinion, but the PCP thought my numbers looked like rheumatoid arthritis.  Well, you know where that lead…

So fast forward seven years.  I’ve still had the numbness and tingling off and on.  Sometimes it’s better and sometimes it’s worse.  At its best it runs in and out and off and on and isn’t terribly noticeable.  At its worst I’ve feared driving and cutting vegetables and have been very careful when holding my kids hands and giving hugs because I just can’t tell what I’m doing or how hard I’m pressing.  I’ve had a few other weird things go on that I haven’t talked a lot about with anyone, let alone a doctor, because despite all this blogging, I’m actually quite a private person, and can’t bring myself to mention some of the more embarrassing details even to someone who loves me unconditionally.

Thursday I had this very coincidental God-moment.  I’ve had this acquaintance, this person who used to teach one of my sons, who I taught alongside for a month once, who has a child in my youngest childs classroom right now, who I’ve known for about 7 years.  We’re not really friends, but we chat in the hallway when we see each other and we’re friends on FB.  We both like Russian literature and anything British, so we’ve been chitchatting about the royal wedding.  I’d gotten an email about some printables for a Kate-&-William party that I was going to send on to her, even though neither of us really has time to do that, it was cute.  And even though I’m great with computers, I still can’t send a private message through FB without messing up and hitting the profile of the person rather than just the send message bit.  So I ended up on her profile, staring at her links she’s posted and one of them is “What is MS?” and her comment is: “I won’t let this get me down!”  So I email her instead “Hey, not to be nosy, but what do you know about MS, because I’m going through testing again and to be honest, I’m worried.”  She called me right away and we chatted away for an hour and a half without stopping until I had to go because my husband was at the door for lunch.  She was diagnosed last fall, after a bunch of random weirdness that led to her collapsing one day and being hospitalized for four days.  I told her all of my symptoms, even the ones that I didn’t know were symptoms, those little half-forgotten things that I thought were just my own person weirdnesses, and she said yes, yes, yes, and oh-my-God-I’m-so-sorry.  She told me about the local support group (meeting that night) and how my story sounds so similar to ones she’s heard there.

Anyway, I didn’t go to the support group.  I’ve been through this once and nothing came of it (but the RA).  I can’t just go to a support group for a disease that I don’t know that I have yet.  I know that this is one of those tricky ones, something diagnosed by exclusion, but to be honest, I haven’t quite gotten up the courage to look at the symptom list, to go ahead and research this, because I’m afraid of what I’ll find.  I don’t want another disease, even if it’s one I already have that I don’t know about yet.  I like this current state of willful ignorance.  In another week I’ll have the brain scan and if it looks wrong, then they’ll push me through to the neurologist sooner.  If not, then I have until June 16th to wait on answers and I’m not sure I want to sit around waiting, knowing yes, I fit all these symptoms, but don’t have the right test results.  I’d almost rather just not know, which is, to be honest, kind of a first for me, because as much as I hate the regular news on TV and such, usually I’m the first person to say “Hey, let’s look that up!” when a question comes up.  I guess I just haven’t been this scared in a long time.

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