Good news from my neurologist

I had my followup appointment with my neurologist today.  She was able to run the necessary tests from my lumbar puncture.  Everything came back negative – no MS, lupus, or infectious diseases.  The lab took blood to test my Vitamin B12, homocysteine and methylmalonic acid levels to verify that they are stabilizing.

I asked why my lumbar puncture produced so little fluid and she said the tip of needle was probably pushing against the side of the dura that covers the spinal cord.

I am feeling much heathier after a month of B12 shots.  The numbness and muscle weakness are gone.  The electrical sensations in my back and legs are much reduced.  My energy has improved a lot and my physical endurance is starting to improve.  I can make it through a yoga class or a 3 mile walk though riding my bike is still hard.

In the end my neurologist said that B12 deficiency is the likeliest explanation for my issues.  There is a small chance that I had a transverse myelitis attack, which can produce the same symptoms and spinal cord damage that I experienced.  There is no test that can detect transverse myelitis after remission.  However, TM will sometimes recur or progress to MS.  Therefore, my long-term prognosis is good but if I re-experience any of my original symptoms I’ll need to see my neurologist immediately to be examined for TM and MS.

So this is hopefully the end of the road.  Thanks to everybody who has given me support, happy wishes and distractions during the scary times.  I love all of you very much!

Back on my feet

It’s been a bit over a week since my lumbar puncture.  The first couple of days afterward I felt reasonably good.  However I had a class on Saturday and Sunday last weekend that kept me on my feet for 8 hours each day.  I pushed myself a little too hard getting through that class and ended up with a pretty nasty post-LP headache.

A spinal headache is a funny thing.  It is triggered by a drop in CSF pressure – i.e. from fluid continuing to leak out of a lumbar puncture hole for a few days after the procedure.  Lower CSF pressure means that the brain sags slightly and pulls on the connective tissue that attaches it to the skull.  This connective tissue is pain sensitive and doesn’t like being stretched.  Thus, a spinal headache hurts most when the spine is vertical and hurts almost not at all when the spine is horizontal.  The standard treatment is bed rest for 1-2 days with lots of fluids and caffeine.  This helps the spine heal and also minimizes the pain.

(It’s amusing that my spine couldn’t produce CSF for an audience but happily leaked lots of fluid when nobody was watching.)

So I stayed in bed for a couple of days.  The enforced inactivity was a bit crazy-making but I was very happy that there was an easy way to make my head stop hurting.  My head is better now, my back is healed and I’m pretty much able to resume normal life.  I haven’t heard anything from my neurologist regarding test results yet.  I think that no news is good news – it means nothing is urgent enough to warrant a phone call prior to my followup appointment.

The next time I see my neurologist, I’ll also redo the initial blood tests to see if the B12 shots are lowering my homocysteine and methylmalonic acid levels.  If my LP shows no signs of MS and my blood work looks good, then I think the bulk of this saga is behind me.  I’ll continue with maintenance B12 therapy for a while and will periodically go back for blood work but the crisis part will be over.

My neurological symptoms have largely healed which makes me luckier than a lot of people who progress this far with a B12 deficiency.  A lot of people don’t catch it in time and end up with irreversible damage.  There are still days when the numbness or electrical shocks flare up but I can usually alleviate them by getting enough sleep and exercising.  As long as I continue taking lots of B12 and my body continues to use it properly I should not experience any recurrence or worsening of my symptoms.

Also, the B12 shots have greatly improved my overall energy level.  I struggled with unexplained fatigue for most of last year.  At one point it was so bad I could not stay awake at work no matter how much I slept the past few nights.   I chalked it up to job stress but in retrospect it was probably an early warning sign of my B12 deficiency.  The moral of the story, I guess, is to take that sort of symptom seriously instead of chalking it up to something that is “just in the head”.

I am trying not to count the goose that lays the golden eggs before it hatches but I’m optimistic and excited that things seems to be drawing to a close.  I feel better than I have in ages and I have a good chance of emerging with health intact.  Compared to how this started – the scary rapid onset, the initial diagnosis of MS, not being able to use my hands very much or walk more than a few blocks at a time – I feel incredibly fortunate to be where I am today.  And I am also grateful beyond words for my family and friends who held my hand through all of this.

More to come after my next appointment with my neurologist!

Always have to do things the hard way

Quick post-lp update… I survived my lumbar puncture today.  It was somewhat less than ideal though.  The doctor had a lot of trouble getting fluid out of my spine and he was only able to collect 1/3 of the amount necessary to do the tests my neurologist wanted.  Also the spinal needle grazed some of my peripheral nerves and every time my doctor adjusted it my lower back and left leg went into involuntary spasms.  We spent a trying and painful hour inserting the needle and then moving it around to try to get a normal CSF flow to no avail.

They’re going to use what they were able to collect to run as many tests as possible and then my neurologist will look at the results and decide whether I need to go back for another lumbar puncture.  If the tests for autoimmune diseases come up negative then I’m probably clear.  If anything looks abnormal or if not enough tests can be run, I’ll have to try again – this time probably in a hospital under an epidural while they try various maneuvers to get my shy spine to open up the floodgates.

Also there could be some concern about why my CSF pressure is so low.  The doctor told me that he’d never seen anybody with such low pressure before (I’ve always been an overachiever.)  It could be an issue with the needle placement, but the doc used fluoroscopy to verify that it was in the right place and he also moved it around several times to make sure it wasn’t blocked.  Some of the other possible causes are pretty serious so there may be more tests in my future.  On the plus side, I’ve had such recent spine and brain MRIs that an undiagnosed spinal blockage is unlikely.  I could have a CSF leak somewhere in my head or spine though.  Or maybe I’m just lazy about producing CSF.

Incidentally, it was pretty cool to see the picture of my spine with the needle in it on TV.  It sounds like it might be freaky but it was actually comforting because I could see that the needle was going to the right place and was not poking anything essential.

Recovery is going smoothly.  I’m allowed to prop my head up a little bit so I am not as bereft of entertainment as I’d feared.  The cats are all passed out in bed with me, amazed to see me stay in one place for this long but not looking a gift horse in the mouth.  If I’m still feeling OK tomorrow I get to move around a bit and should be back to full activity by next week.

Many people sent me wonderful love and support today before and after the lp.  You guys rock   It definitely helped me feel better especially when things started to get hairy.

Off to eat a bit of dinner and think about following my cats into dreamland.

Lumbar Puncture… because “Spinal Tap” sounds too fun

My lumbar puncture is scheduled for Thursday afternoon.  We’re going ahead with it because although the B12 shots seem to be helping, I’m still having new neurological symptoms pop up this week.  My neurologist wants to test my cerebrospinal fluid for evidence that may point to or eliminate conditions besides B12 deficiency that could be contributing.

A lumbar puncture is the same thing as a spinal tap, only it doesn’t make people think of 80’s music and punk rock.  In a nutshell, someone with very steady hands will insert a needle through my lower back into a space between the lowest vertebrae of the spinal column until it punctures the membrane that isolates the brain/spinal column system from the rest of the body.  The needle will allow some of the cerebrospinal fluid contained within to drain into a collection tube.  It takes about an hour from start to finish presuming my CSF drains at a normal rate.  That could stretch a bit longer if it turns out that I have a shy spinal column.

It sounds pretty scary and a lot of people have told me lumbar puncture horror stories that happened to their roommate’s aunt’s best friend (thanks guys!)  but in reality it’s supposed to be pretty painless and safe.  The needle is inserted below where the spinal column ends so there are relatively few critical nerves to avoid.  Most procedures these days begin with an injection of painkiller along the entire needle path, not just on the surface of the skin as past practice used to dictate.  Finally, my LP will happen in a radiology lab so that my steady-handed CSF collector can see my spine with live X-ray vision.  This makes it easier to get the needle into the right place on the first try.

So the LP itself is not supposed to be that bad but there are possible complications to deal with afterward.  The most common complication is that the puncture in the spinal column can reopen, allowing CSF fluid to drain into the area around the spine.  This results in an excruciating headache until the wound re-heals and the body replenishes some of the lost CSF.  Somewhere between 5% and 33% of LP patients experience this depending on which source you believe.

To lower my risk of sprouting a leak, I’ll be on bed rest for the rest of Thursday and possibly part of Friday.  Laying in bed all day might sound like fun but this is a particularly draconian and torturous form of bed rest.  I must lie flat on my back and not move at all for a minimum of 6-8 hours.  Propping my head on a pillow is a big no-no, so movies and books and laptop are out.  To add insult to injury, I’m supposed to drink plenty of caffeinated beverages that evening.  The liquid helps the body replace the stolen CSF and the caffeine helps avoid or address a puncture leak.  So I’ll be completely wired yet stuck on my back all night, which sounds like the kind of thing that will make for a very funny story at some future date when the trauma has subsided.

This exercise has led me to realize that my ceiling is boring and could use a little spicing up.

More to come later this week when I hopefully emerge from my LP with spine and sanity intact!

How I Learned to Shoot Myself Up

Happy New Year everyone!  I’m usually too lazy to make New Years resolutions so I just end up with some vague intentions floating around my head like “learn new things” or “limit chocolate intake to one pound per day”.  This year is off to a smashing start because it’s only two days old and I’ve already learned something totally exciting and new:  how to inject myself with drugs.

OK, it’s only intramuscular B12 so it’s not that scandalous.  However, it still felt pretty badass the first time I gave myself a dose on my own.

It’s taking a while to get my next set of doctors’ appointments because of people being on vacation.  From what my neurologist said, though, it’s imperative that I start heavy B12 supplementation as soon as I can.  Some of my friends have been prescribed B12 shots in the past and were generous enough to hook me up with the necessary supplies and show me the process.  I’m extremely happy for anything that helps me get better faster.  Also, I hope I can convince my doc to keep letting me do my own shots instead of going into the clinic every day.

The lumbar puncture is coming up soon though getting it scheduled has been a huge bureaucratic mess.   I love the doctors at the place I’ve been going but there have been lots of issues untangling the complex web of the different offices that make up the overall medical complex.  A lot more of this burden is placed on the patient than I would expect.

Health continues to have its ups and downs… hands and legs are almost completely normal now but my Lhermitte’s Sign symptoms have suddenly gotten much worse and I’ve rolled into another cycle of bad insomnia.  Lhermitte’s Sign is the one where tilting my head forward sends electrical-shock feelings down my back and legs.  At first the intensity and duration of the shocks were pretty low but now if I move my head quickly it feels like my entire midsection is plugged into a wall outlet.  It might go away if my neural damage reverses itself but it might stay – it’s too soon to tell.  In any case, I’m trying to train myself not to look down.  So, if the next time I see you it seems like I’m sticking my nose in the air, please understand that it’s not you, it’s me.

More test results, a disappointingly boring abnormality and daily B12 shots

My docs have been surprisingly busy over the holidays.  Here’s the current status:

* Most of my blood work came back normal, including my B12 levels.  However, several tests related to B12 metabolism (like homocysteine) came back way out of whack.  The current working theory is that even though my B12 levels have always tested normal, my body isn’t making proper use of it for some reason.  I’m going to be prescribed daily intramuscular shots of B12 for a month to essentially flood my body with B12 and see if that stabilizes the associated tests.  I hope I can convince my doc to let me do the shots at home myself as they are not hard to self-administer.  It would be a lot more convenient than going to the doc at 8 AM every day for a month.

* That abnormality in my brain MRI turned out to be a growth in my sinus – probably a cyst but impossible to say for sure from the images.  It’s probably a result of my lifelong tendency to catch every head cold that comes through town.  And here I’d imagined all sorts of terrible things that might be wrong with my brain.  Still, it means more fun medical procedures.  I have to go to an ENT soon to have it endoscoped and possibly biopsied to ensure that it is truly a benign cyst.  Depending on the outcome I’m looking at possible surgery to remove it.

* My neuro still wants to do the lumbar puncture test just to be sure nothing is missed.  I’d hoped to get out of that one given my blood and MRI results but my docs are nothing if not thorough.

It’s not entirely clear why my B12 levels test normal but the B12 isn’t actually making it into my cells.  It could be related to my diet – I’ve been veggie off and on for a long time and consistently for about 6 years.  It could be a metabolic deficiency.  There are a few of those that are not that uncommon.  It’s possibly been an issue for a long time and is only apparent now that a threshold of neural damage has been reached.  We’ll dig deeper if my homocysteine & related tests don’t show rapid improvement.

Physically I’m having good days and bad days.  Sometimes I feel almost normal save for needing much more sleep than I used to.  Some days the numbness will come back to my hands or my legs, or I’ll lose coordination while walking, or I’ll feel new strange electrical sensations in my spinal column.  For the most part I can keep up with everyday life as long as life is pretty tranquil.  Things will be a bit rougher when I start looking for a new job in January at the same time as I’m dealing with all of the upcoming medical procedures.

It’s been a hell of a ride the past few weeks, from getting sick to going through a huge battery of tests and receiving a diagnosis of multiple sclerosis, to having more tests and a finally new, less-scary diagnosis of B12 deficiency.  Even though there are a lot more treatments for my current diagnosis it definitely isn’t a trifling issue.  It’s caused nerve damage that may or may not heal and it needs to be alleviated ASAP to halt the escalation of that damage.  I won’t have a clean bill of health until after several months of B12 therapy and stabilized blood tests, a clean lumbar puncture, and a resolution to the thing in my sinus that is hopefully just a benign cyst.  Odds are good that all of these things will work out OK but there’s a lot of work left to reach the end of this road.

As always, thanks to all for your love and support.  Have a safe and joyful New Year!

Happy Holidays

Happy holidays, everybody!  I hope that your celebrations are joyful and have just the right level of debauchery.  You have certainly brought me much happiness during the last tumultuous month.

The quick health update:  My body is getting better slowly.  Yesterday I had no numbness or muscle weakness and I went on my first serious walk up to Capitol Hill and back.  It’s the first time I’ve walked more than a couple of blocks since this whole thing started and it felt damn good.  My energy is returning, too – I’ve made it out to social events a couple of times this week.  It’s been so much fun to see you all in festive spirits.

My only remaining quirk is that the automatic reflexes in my legs are dead as doornails.  You know how the doc will sometimes tap your knee to make your leg kick?  Mine doesn’t do anything.  It just sits there like my cats sit on my laptop when they believe I am remiss in my feeding duties.  The lack of automatic leg reflexes doesn’t get in the way of moving around and they will probably come back eventually.  In the meantime it’s a cool party trick.

Once again, thanks to everybody who has given me love, support, hugs, good vibes, etc.

Cautious Optimism

I had my brain MRI and first neuro appointment today.  I will spare you the several hours of frustration due to a clerical mistake on the appointment calendar.  Suffice it to say my head got photo’ed and I got to meet my neuro.

She didn’t have a lot of time to look at my scan.  She said, however, that there is no evidence of demyelination in my brain.  That, combined with my lack of speech/vision impairment and a couple of other oddities, make her very skeptical that what I have is MS.  That is a huge piece of good news.

However, she did say that she saw something abnormal in my brain MRI and needs more time to look at it.  She didn’t provide a lot of detail but it sounded like a vascular irregularity or unusual growth (read:  potential aneurysm or tumor).  She didn’t seem too worried but she did say she’d look more closely and call me if anything needs my attention.

So, my neuro thinks MS is less likely but we did a physical exam and even though this is my best health day in weeks, there are some measurable oddities.  I have some residual numb patches.  The reflex nerves in my legs (like when you hit your knee and your feet jerk) are completely dead.  This is actually one thing that argues against MS – she told me that the automatic jerk reflexes are hyper-activated in people with MS.  She has had to dodge boot kicks to the head from little old grannies before.

We explored a lot of possible diseases but the thing my neuro honed in on over and over is vitamin B12 deficiency.  Vitamin B12 is used, among other things, to build the myelin sheath that coats neurons.  Without it, you get nerve damage to specific areas of the spine like what showed up in my spinal MRI.  That, combined with the dead-leg-reflex thing, is making her strongly suspect that I have a long-term B12 deficiency that has led to neural damage.

It’s a very real possibility as B12 is only available from animal sources, particularly meat, cheese and eggs.  I have been vegetarian for many years and have been reducing the number of animal products I eat for health reasons.  (As much as I would love to live on macaroni and cheese, I need a slightly more diverse diet).  Also, some people have issues absorbing B12 digestively which is a double whammy for veggies.

So, I’m going to try a round of daily B12 shots and see if that helps.  In the meantime, though, the B12 thing could be a red herring so we are doing many more tests to rule out all sorts of obscure nerve diseases.  The art of diagnosing a neurological condition is a bit like the problem of pinpointing the exact location of a hydrogen atom in space.  You can speak in terms of percentages that a patient has a specific condition, and observing an aspect of a patient closely can influence those percentages, but you rarely arrive at certainty until very late in a disease’s progression.  (Autopsy can circumvent this process but most of the time that is hard to do on a living patient who is using their brain unless that patient is Dick Cheney).

In summary, for the betting among you, my MS probability is down, my B12 deficiency probability is up, and my random-other-disease probability is unchanged.

So what happens next?  My neuro’s lab tech took SEVEN FREAKING VIALS of blood to test for various antibodies, proteins, alien offspring, etc.  That’s enough blood loss to make me woozy, especially after 6 hours of waiting/being tested/waiting/little food or water.  Also, I was slightly discomfited by the cut out comic on the lab wall about nurses who turn in to vampires.  I bet two of those vials make their way to some sick, sick LARP game this weekend.  In exchange I demanded a cookie from the Godiva gift bag that was sitting on the counter.

After New Year’s I will go in for a spinal tap which will point a smoking gun at (or rule out) several other possibilities.  This is going to suck royally and I warn you now that I am going to whine for people to bring me soup and entertainment while I lie flat on my back for 24 hours.

For the rest of the holiday season things should be quiet unless my neuro decides that brain anomaly is a threat to our national security in which case this blog will probably be deleted and your memories erased so you forget all about it anyway.

Happy holidays and much love to you all.

A note on MRIs, piercings and catharsis

Health status: legs are better today, hands are worse. I feel alert and chipper after 11.5 hours of sleep. If you haven’t seen me much lately, it’s because I must spend half my existence unconscious in order to be functional during the other half. This delights the pile of cats on my bed to no end. In fact, if you have a cat who is running low on cuddling, I offer my cat-snuggling services at a very reasonable rate. But it will have to be at your place because my household’s five cats say there is no free surface area on my bed right now.

Today I am pondering the fun of MRIs and body piercings. MRIs work in part by beaming incredibly strong magnetic fields at critical body parts. When directed at a relatively non-magnetic object such as my sweet, tasty brain, the resulting effects are just strong enough to construct a picture of the surrounding soft tissue. However, if you put some nice ferrous metal into an active MRI machine you would quickly learn much about ballistic physics. Every MRI tech has their own favorite horror story of forgotten metal being ripped from a patient’s body by the machine’s monstrous magnetic field. These stories often include said metal flying several hundred yards through multiple walls and impaling itself in some poor innocent bystander in the waiting room. Thus, it is of the utmost importance to ensure that patients are magnetism-free before an MRI.

All of my piercing jewelry is 316L or 316LVM surgical steel. It’s the same stuff that medical implants are made from. It’s very non-magnetic – I never set off airport metal detectors, even in ultra-paranoid places like JFK and Spokane, WA. However, surgical steel does have a slight magnetic load and that’s enough to make it risky to put in an MRI machine. In researching whether my piercings would actually need to come out for my first MRI, I read lots of opinions both pro and con in various medical journal abstracts. Nobody seems to know what the maximum safe surgical steel load is.  To be on the safe side the piercings all have to come out. (As an aside, it also means that if you have surgical steel implants, screws or staples in your body, you probably can’t have MRIs. If the docs want to see inside your head, they’ll use older technologies like CT scans and trepanation.)

So, the night before my first MRI I took all my piercing jewelry out. I have a few – nose, tongue, and a bunch in the ears. They’re all well healed so getting them out was only complicated by the fact that my finger coordination was on strike that day. After my MRI I reinserted as much jewelry as I could but found that a couple of the trickier ones had closed up overnight. That meant an emergency trip to the piercer to get them reopened.

Now, this was immediately after the MRI that included an extra 40 minutes of scanning and clear signals from the techs that something was badly wrong (but nobody would tell me what). I was in a state of numb shock going into my piercer’s office. We arranged to get the closed holes opened back up by tapering them – a technique where a graduated needle is inserted into the piercing’s opening, stretching it to the desired size. Doesn’t sound so bad, huh? Well, it turns out that stretching hurts a lot worse than getting a fresh piercing and I really wasn’t mentally prepared for pain that afternoon.

So the first taper slides into a recalcitrant piercing hole, it hurts like hell with chocolate syrup on top, and I howl. And howl and howl and howl. I pride myself on taking piercings stoically but that day it felt good to just let loose, though I think my piercer was a bit surprised. He was very careful and gentle with me for the rest of the reinsertions and thankfully there were only two really bad ones.

The morals of the story are: if you must have an MRI, put plastic retainers in any piercings that are likely to close up overnight. And tell your piercer prior to any painful procedures if you just found out that you’ve got a degenerative nerve disease.

Which is exactly what I am off to do this afternoon. Here’s hoping that round two goes a little better than round one did.

Waiting

Healthwise I am doing a bit better today. I have more hand function and leg strength than I’ve had in weeks. I’m not sure if I’m experiencing a remission or if this is a benefit of the yoga I did yesterday. My energy level is OK, though it still takes 10-11 hours of sleep to make me as functional as 7-8 hours used to. I’m going to try to make the yoga a daily habit and tonight I’m going to try to get out of the house for a bit. If the fingers stay functional I may even make some holiday ornaments in my glass studio.

My doctor worked some magic and got me a neurologist appointment directly after my brain MRI on Friday (quite an improvement on Jan 31st, which is all the neuro’s receptionist would do for me when I called them on Monday). This is good news as it means I’ll know how much damage my white matter has sustained and I’ll be able to discuss any viable treatment options. However, part of me is terrified to know the reality of what is happening inside of my treacherous brain. I don’t watch that much TV but I’ve seen enough to know that no brain MRI is ever routine and that that approximately 85% of them reveal a terrible tumor, latent aneurysm, or copse of alien eggs nestled cozily into the amygdala.

Really, though, my fear comes from the fact that Friday will be a moment of truth. Right now I can comfort myself with the possibility that perhaps I have a relatively benign version of MS and that I’ll have years of good life to come. Friday’s tests will tell me more about whether that is a likely outcome. And also whether I’ve been feeding my alien eggs enough radioactive uranium gas.

MS is not curable – once you have it, you have it and the nerve damage sustained during each attack is permanent. But it is much more aggressive in some people than in others for reasons that are not well understood. And several therapies have been discovered in recent years that shorten the duration of an attack or even reduce the frequency of attacks.  Taken altogether, this makes MS one of the most random diseases in existence.

So, for now I have no idea what my prognosis will be but I should have a slightly better idea on Friday afternoon. Wish me luck!