Results!

“Providence has its appointed hour for everything. We cannot command results, we can only strive.”

–Mahatma Gandhi

Between last night and today I got all the results I need for a while.  Here’s what it boils down to:

1. I’m not having seizures.

2. When I got taken off all the pain meds cold turkey, it a) caused rebound headaches and b) made my blood pressure go up.  The neurologist should have known that and shouldn’t have done it that way.

3.  The antihistamines I’ve been on for the last decade off and on and off and on and off and on…those are NOT GOOD FOR ME.  “Why were you taking them?!” said the doctor.  “YOU told me to!” said I.  “I did this to you?!” said the horrified doctor.  I just nodded.  “Oh my.”   The doctor told me that in the combination of meds I was taking, we can account for the dizziness, the memory lapses, and the blood pressure raising.

4. I need to take better care of myself.  Period.  I should have been tracking my blood pressure and my headaches and my dizzy spells and I should have gone in to see the doctor as these things were happening, not just after a few weeks or months of them occurring.  I need to rest more, too.  Yes, yes, I know this.  I’m just never convinced that what’s going on is all that bad, so I put things off.  Also, resting is for old people and babies.  Well, that’s what my brain says, anyway.  It’s wrong.

So in the end, here’s what I’m doing:

1. Stopping the antihistamines.  Throwing them in the trash. Perhaps stomping on them.

2. Starting a nose spray.  Start breathing again.  Breathing more and better will relieve some of the dizziness and help me think more clearly. Who knew?

3. Be more careful with my pain meds.  Making sure I cycle through them properly instead of only taking the naproxen, even if the rheumatologist says I can do it that way.  The neurologist says that way lies the path of the headaches.  (Although maybe I shouldn’t listen to any of the doctors, really.  Cause where has that gotten me?  Thousands of dollars of testing and insanity.)

4.  Call the doctor back in two weeks with more blood pressure stats and let him know if my nose spray helps me breathe.

5.  (It pains me to say this) RESTING MORE.  (I just spent 30 minutes on the couch watching repeats of Downton Abbey.  It was glorious.)

So there you have it.  Results.

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Back in the saddle

Sorry about last week, y’all.  Didn’t mean to scare/worry anyone.  I was having some problems with the meds I was on and apparently it wasn’t just the head-poundingness that was a side effect, but the depression as well.  I got a call from the neurologists office, apologizing for having not called me back sooner (my message went astray and the doctor was off at a conference).  The told me to stop the new meds immediately and they’d call me back this week with info about NEW new meds, et al.  So I stopped the old new meds, felt a bit better Saturday, but had to stay home for the weekend to attend a sick boyo.  Yesterday I was doing all right, but today I feel weird again.  Not so weird as last week weird, just different.  So I’m taking things one day at a time and trying to be easier on myself when stuff doesn’t get done on the schedule I set for myself.  And now I’m going to go wander off and do something that requires less concentration because talking/typing seems not to be my strong suit today.  *waves at the internet*

Neurologist appointment

I had a follow-up appointment with my neurologist today.  One of those super-extra-long appointments that you’re not quite expecting.  My “migraine’s” had been getting weirder of late, so I had my headache chart all filled out and made a list of the extra special weirdnesses that had occurred recently.  She studied my chart, asked quite a few more questions, and told me I’d be having more tests run and be getting a couple new medications.

 

One of the tests (done today) was just to check that I hadn’t accidentally overdone it on Vitamin D.  I was way low previously, so at my last appointment she’d told me to up my dosage on supplements, which I did, following her advice about how much.  So we’re just checking on that.  The other test will be an EEG because she’s concerned that my weirder episodes aren’t migraines after all, that they might be seizures instead.  In the end it doesn’t really matter, as the meds she’s prescribing will take care of both of those things, but seizures require twice the dosage you take for migraines.  (The other medicine is one of those migraine stoppers you take once the migraine hits – I used to take those a lot.)

 

So…I came home and started looking things up on the internet about seizures.  It was quite interesting, but I’m not getting worked up about it, especially after all that testing last summer that ended up coming up with nothing new.  I’m going to try to chill out and not worry about it.  At this point, what can I do, right?

Voltaren update

My husband went and got my Voltaren prescription filled this afternoon.  I always love sending him to the pharmacy.  The people there never talk to me outside of asking my name and telling me to sign here or there.  He goes in and they get all effusive and full of facts about the drugs I’m taking and how to take them most effectively.  I don’t know how he gets them to talk.  He thinks it’s just because he’s picking it up for me and is not me and they’re trying to be careful.  *shakes head*

 

Anyhow, 4 things: 1) This “really expensive” tube of medicine only costs as much as one session of PT, which I find to be really cheap since the PT session is only one of like 20 that need to be paid for and this tube will last as long as all 20 of those sessions for the low price of just one and 2) Voltaren did wonders for my unhappy thumb.  (My back, well, we’ll see.  I did a bunch of stuff while waiting for it to dry and I think I made my back pain worse than it was.  Will try on another joint tomorrow and see if it helps like my thumb.)  3. It does not burn.  That is so delightful!  4) It smells like old-school lysol, which makes me all nostalgic and hasn’t annoyed me.  So for now we’re cautiously optimistic.

Rheumatologist appointment

After I spent yesterday perusing the blog carnival about pain scales, I came to the conclusion that a) my pain level, regardless of scale, is usually only about 2 or 3 in a few joints, with occasional forays into 4s and 5s when I’m in a flare.  So when I had my 6 month check-in with the rheumatologist today, I decided that instead of asking for the next big gun treatment, I was going to ask for another stop-gap measure, something I’d read about on other people’s blogs that had never been offered to me: a pain relieving, anti-inflammatory gel.

 

I didn’t start off with that, of course.  I told him about my last few months, about how I only flare when I’ve got big things going on (of the stressful variety. ie. Thanksgiving or Christmas) or I do something exceptionally stupid (moving furniture, driving long distances, trying to do all the Christmas crafting in one week, etc.).  I told him about my prednisone tapers and how they’d helped.  I told him about my in-between days when I’m feeling all right and the days that I can barely move my fingers and I’m not fine.  He told me my next option was the IV drugs and physical therapy.  I said “No, thank you” and then mentioned the gel.  He said the only reason they hadn’t offered it was that it doesn’t always work and that it was kind of expensive.  “More expensive than IV drugs and physical therapy?”  No, not at all.

 

And so that’s what I’m doing.  More prednisone when I’m flaring (with a phone call in to the office to let them know), anti-inflammatory gel for the in between pain, working on my PT at home from my PT Folder o’ Goodness, and follow up in 6 months.

I know, I know….

….you’d nearly forgotten I blogged here.  I had as well.  I keep meaning to blog more, but mostly kept coming up with the same non-answers and/or depressing news, so I stopped blogging entirely.

I have been having the bad days again, though.  I put myself on a 10 day steroid taper, as per the doctors instructions for Times of Necessity.  The steroids made me glad to be alive again (and hungry as all get out.  I ate and ate and ate.  One day I got sick.  It was so not a good day, but it reminded me to be more careful.  Learning is always good, right?).

School started for the kids back in mid-August, which meant I did lots of shopping and resting and shopping some more.  Then PTA stuff started back up.  I’m homeroom parent coordinator, so I’ve spent lots of time making a database of which parent is willing to help with which activity for which grade (as well as all the contact info, which flummoxes me a bit because the school already has most of that info in a database somewhere; why must I copy it?).  I started volunteering a couple hours a week in the school library helping check in and out while the librarian teaches classes.  I also help out with shelving (I bring in my own kneeling pad & am allowed to scoot around in the wheeled chair when my knees are bad) and in the computer lab.  It’s more fun and life-affirming than you can imagine.  My husband thought it might wear me out, but it actually has been energizing me because it gives me a couple hours out of my own head.  Plus I get to talk to kids about books!  What could be better?!

Other things: I seem to be done with the sinus infections for now, despite living in the Land O’ Big Fires (seriously, if you looked at a map of Texas there’s a ring of fire around my town) and woah-allergies.  I do have a staph infection (probably mrsi, pending lab tests, according to Dr. H.) of a wound that I thought was just a blemish.  I got it the first day I used the machines at a new gym.  (They now have bleach wipes available)  More antibiotics, yay.  Just what every girl wants, right?  The good news is that the antibiotics will also save me from the pneumonia that the doctor thought it likely I might get due to the stress of the lungs from all the fires (apparently I was on The List of the Immune-deficient.  Also so much yay.)  Bad news: more yogurt eating.  I used to LOVE yogurt.  Now it’s like a more flavorful medicine.  I hate that “they’ve” made something as yummy as yogurt seem bad.  *sigh*

Other things: my insurance/pharmacy plan seems not to love my blood pressure medicine, so I’ve spent a vast amount of time on the website/and/or/phone trying to figure that out.  If I jump through all the right hoops in all the right order I can get it practically free (<4/month), but no one wants to tell you that up front.  You have to spend gobs of money and time on the phone (we don’t have a landline any more so any time on the phone=money spent) to find out anything and ususally half that time is spent on a call system that says “I’m sorry, I didn’t quite catch that.  What did you mean to say?”  which I find infuriating.  If they’d just use a person instead of a computer, they’d understand that I wanted to talk to a person in ther first place.

More other things: the temperature has finally dropped from a daily high of 105 to something more like 95. Oh what a difference 10 degrees makes in a day.  In the mornings I feel so much like a regular person.  The van is easy to drive.  My shoulders are down.  My body is stiff, but not achy.  It is such a goodness.  In the afternoon I no longer feel like deadness personified, but merely hot & sweaty.  I can make the kids a snack myself, rather than telll them what to get out.  Love, love, love it!  I cannot even express how much better it feels.  Just a thousand, million times better on the good days.

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.