ChatMS 2/8/2016

This week's ChatMS was all about relapse triggers - something I have learned a lot about.  Remember to cut/paste the questions to put on your own outreach, and spread the word!


Q1 – The cause for MS is unknown, but there are theories. What do you think is the biggest “trigger” of MS? (Genetics, diets, etc.)

This is an excellent question.   Some people believe it is all about the environment you grow up in, but MS is really an overactive immune system, not one that is under-functioning.  It would make the most sense that it is somehow brought on by a virus caught at a young age that matures in young adulthood - in fact, there may be several different subtypes (more than the differences between primary progressive or relapsing/remitting) as we currently know them.  I grew up in a very sunny state and spent plenty of time outside so I don't believe the Vitamin D deficiency piece, more that the environment is home to many different insects and viruses that we have yet to identify.



Q2 – What have you found that supports your theory?

See above - where I grew up debunks some of the theories about Vitamin D.  But with the similarities between Lyme Disease, Fibromyalgia, Multiple Sclerosis and Lupus, the most obvious connection is a bacterial or viral cause that is spread early.  I was a very sick kid, an underactive immune system is unlikely to turn on you suddenly without cause, and it makes more physiologic sense that a virus would reactivate in times of stress or heat, which promotes multiplication.

Q3 – When it comes to relapses we know several things can be triggers. What seems to trigger relapses you have had?

Stress is the number 1, number 2, and number 3.  Absolutely.
We have a tendency to forget that our brains interpret stress differently than our hearts do, if that makes sense.  The things that make us feel 'stressed out' can be negative, but our bodies respond to positive stress the same way.  My biggest relapse happened right before the most important month of my graduate career - I was performing and speaking at a conference, I had several job interviews lines up, I was presenting a poster at another conference, and had 4 plane trips planned.  Right before this, my left side failed.  I had to cancel the first trip and, therefore, the first job interview.  I lied about the rest.  In retrospect, I should not have gone to the first conference, either, but I couldn't jeopardize my future by passing up those opportunities.  None of these things made me feel 'stressed out,' but it still hit me harder than anything I could have imagined.

Q4 – What have you done to avoid these triggers?

Honestly?  In my case, it was moving away from my mother.  She is still the most major stressor in my life and it is not coincidental that when she upsets me, I have flares.  When I was first diagnosed, I 'failed' steroids twice, which is to say I had 2 rounds of Solu-Medrol and my lesions tripled in size or grew new ones.  I have yet to meet many people who have failed the treatment like I did.  Not a coincidence that my mother was more present in my life that month because of my diagnosis.  It is very important that I am aware of her effect on me.

Q5 – Some mentioned this already, but stress can affect MS symptoms and relapses. How stressed are you, currently? (Scale of 1-5)  

I am about a 4.  I'm pregnant, what can I say?  :)


Q6 – Over-heating your body can also be a trigger of MS symptoms/relapses. On a scale of 1-5, how cool would you say you are? 

I'm about a 2.  Heat absolutely effects me.  I can take a bath or a hot shower and be okay because it isn't a really long time, but a really hot day is like a nightmare to me.  I have always been heat sensitive, even as a kid.  When I am having an active flare and try to exercise, the rise in body temperature means I cannot feel my feet at all and I get 'springs' in my legs.  Very disconcerting and I worry about falling and hurting others.

Q7 – Has your neuro given you any tips/tricks to help you avoid triggers of MS symptoms/relapses?

 HA!  Does anyone's neurologist really care that much?  My neurologist basically said "I don't know what to do with you" when I had my 2nd flare while pregnant.

Q8 – What tips would you give to others to try and stay clear of possible triggers?

Become aware of what triggers you and avoid it, even if you think it would be worse to be without that trigger.  I didn't want to get away from my mother as badly as I really needed to.  She raises my blood pressure and gives me so much upset.  If it's really hot outside, I deliberately plan to do low-key things that don't involve going outside too much.  I haven't found any food triggers, but I do know that certain multi-vitamins give me MS Hugs.  It is hard at first to eliminate triggers, but is well worth it.  Good luck!


That's  a wrap, all!  Thanks for reading!  - MSloan 

Bye bye, right eye

I am... more than a little bit disappointed.  Well, I guess disappointed isn't the right word.

I feel mislead.

I feel like I have been told from the get-go that pregnancy increases remission of multiple sclerosis, especially as the pregnancy progresses.  Every resource I've looked at talks about the wonders of pregnancy during MS, even if there is an increased likelihood of relapse shortly after birth.

As if that prospect isn't terrifying enough, and has implications about breastfeeding that not a single person talked with me about it, I am having serious relapses while pregnant.

The first I wrote about a few weeks ago; my feet went numb again.  This is very clearly an MS symptom and not due to pregnancy, because I am not heavy set in the slightest, and otherwise have not gained enough weight to cause that sort of symptom.  Usually, that is brought on by water retention and compressed nerves due to weight gain.  I did feel carpal tunnel pain and tingling in my hands, but that was long before I had the feet numbness.  Even when I first found out I was pregnant, I had a symptom that I call 'short circuit,' where I would touch a certain part of my arm and I would feel it somewhere else.  VERY weird.  Like, touch your arm just below your wrist and imagine you are feeling it at your elbow.  Makes you constantly slap your arms thinking you have a bug on you when you're just eating or writing.

Well, now I have had another serious symptom.  I can't see out of my right eye.

Now, it's not like I haven't had this type of thing before; I had optic neuritis shortly after my big relapse in February of 2014 and it was incredibly painful.  Shortly thereafter, I went to Las Vegas for a medical conference, and all lights had halos - it was certainly strange, and I did have double vision intermittently.  But by the time I got home, it seemed to be relatively normal.  I had an optic/cluster headache earlier this year, but thankfully didn't have any visual disturbances.

This time, there is no pain.  I have a headache daily because of my pregnancy and it feels different from my typical tension headache.  This one is more likely hormonal or dehydration, which I try to battle as much as I can.  Optic Neuritis pain is specifically over the affected eye and not a single drug will touch it.  So, for the most part, I am thankful that this one has no pain.

Thursday evening, I was at the grocery store after work when I noticed that something just didn't look right.  I think I took my glasses off at least five times to clean them, to no avail.  I got home and sat at my computer uploading to my Society 6 account and still felt like something didn't look right.  I went to my pregnancy class and thought, "well, maybe it's the lighting in here."  I came home and things still didn't look right, but the best way to describe it was an afterimage of a bright light - like when someone takes a lot of pictures all at once.

Friday morning I woke up and while I was in the bathroom, I noticed that I couldn't see to my right.  I turn to my right to get tissue and my earplug.  Nope... all fuzzy.  I didn't even wash my hair - I was afraid that my retina was detaching because I felt no pain and I also had been seeing intermittent bright lights when I raised my hands over my head.  If I had any other job, I would have stayed home.  Fast forward a few more hours, the dark area got bigger and bigger, and now at least a quarter of my vision on the right is totally shot and distorted, while the rest just feels 'off.'  After a visit to the opthalmologist (who I couldn't get to understand the nature of my problem), we finally agreed that it was retrobulbar optic neuritis, related to my multiple sclerosis, and not my pregnancy.

This sucks.  This SUCKS.  If you were to draw a square, the entire left/bottom quarter is essentially missing.  In one eye alone, this isn't the worst thing in the world.  But when I look with both eyes together, this region is in the middle of my vision, and it's very distracting.  When things move in this area of my vision, it looks like static.  My eye is working okay, it's my brain that's all screwed up!

I can't do the usual steroid treatment because I am pregnant.  I feel so helpless.  Like, what should I do?  What will happen?  It seems to be getting darker.  I don't know if it's getting bigger.  I don't know how long it will take to get better.  Thank God I am left-eye dominant and look into people's ears on the opposite side.  This is just ... unfair and ridiculous.  I feel lied to, mislead, and angry.  I'm 20 weeks pregnant with a little girl, I have bigger fish to fry, immune system!  Why have you not calmed down yet??!!

Oy.
MSloan

T Minus...

I'm giving it until Friday to see if things improve.  T

here is no way this is just pregnancy; it feels too much like the first time, though less severe, which is a good thing I think.  I can still walk, but I definitely feel more unsteady, despite the fact that my legs feel fairly normal.  The numbness is moving around my feet throughout the day; at night, it's the worst, waking me up and making me panic.  In the morning, after walking around, I feel ok and barely notice the numbness.  By noon, it's starting to bother me again, ebbing and flowing.

Now it's about 8:15, I have had a very rough day at work, my crazy mother was set off again today and I'm getting hate mail, and my feet feel very funny.

Here's to hoping I can feel them by Friday.  If I can't, I will have no choice but to call my neurologist.

And I knew when I went to bed on Monday that my toe felt funny.

MSloan

Results of Art Therapy, 5/18/14

This is the effort I put forth this evening since my last post.  Nothing compared to my lion, but he'll have to do.  Meet my "Shere."

Love all,
Sloan

MS - Instructions Not Included

When I started to not feel 'right' back in late 2009/early 2010, I had a simple thought run through my head every day that things felt off:

"I can't wait to feel normal again."

With all of these developments progressing as they are, I'm starting to understand that my little silent wish is long gone now - things are never going to feel like they used to before that time.  Sure, there were pockets of time here and there that I felt 'mostly ok,' better than usual, and so my energy levels were closer to where they were supposed to be.

The three months before my diagnosis were the best I'd had in years, more fulfilling and happy than I had noticed in the recent past.  Graduate school sucks the life right out of you, and heaven forbid you have creativity to sacrifice while you learn - it teaches you to think in a box, so when you finally have a chance to do something else, you have to train your brain to think for itself again.

Sure, it sounds cheesy, but during that time I became involved with a pretty large fandom of people.  I started writing fanfiction, drawing, and painting again.  I haven't painted in years, and I started doing portraiture work of all things!  Portraits are insanely difficult, but I loved every minute of it.  I started painting superheroes, birds, lions - even a huge 30 x 40 inch dragon (measure out the size of that canvas.  It's the size of my kitchen table.)  It's not the biggest thing I've painted, but it was the biggest thing since I was 17 and did backdrop painting for my school's drama department.  I truly believe that my little celebrity crush for this fandom woke up a part of my brain that I desperately needed, as obsessive as it made me feel.  I wrote a novel in 6 months for goodness' sake.

But today, I woke up knowing that my novel was over, that I had unfinished paintings all over the house - as a result of not being able to finish them because of bad optic neuritis during my diagnosis.  I'm trying to pack because I have to move in the next month to California, but I don't have the energy to do all the cleaning, packing, and organizing that I have to do before this happens.

So tonight, I'm going to try and do something that makes me feel happy again.  Tonight I'm going to start a new painting.  Please wish me luck that this will not be interrupted, and I won't have more unfinished projects all over the house.  I have commissioned paintings to complete the superhero lineup - but I just can't focus enough to paint faces right now.  I hope they understand.

I wish this came with a book of tips - like how to get your energy back, how to not feel hopeless, how to not feel frustrated when they send you vials and syringes in the mail with NO INSTRUCTIONS. But alas, I will have to rely on my paintbrushes to do it for me.

Love all.

Muted

Depression is not a presence of sadness.  Rather, it is more an absence of joy.

I am steeped in quite a pit of depression right now.  It is somewhat seasonal, and I can't say I'm surprised, but it is coming at a very bad time.

I had another MRI about a week ago, and the insurance didn't cover the brain, only the cervical/thoracic spine.  Those are apparently clear, but then it doesn't explain why I get the shocks when I move my neck forward.  And does this mean that my neurologist can't get a report on the brain, even though they took the images?  How does that make sense?  If I had to sit in the MRI machine for 2 hours and have a bruise on my arm as a result of a botched infusion of the gadolinium, don't I deserve to know what the heck is going on in my brain?

I'm supposed to start Gilenya next week.  I was supposed to start it today, but didn't find out until the end of last week that I needed to have a lot of pre-tests done before.  Called by the neurology MA - 'You will be hearing from this nurse to get them scheduled.'  'Okay, thanks, I will get them set up.'  Wait a few days, hear nothing.  Call back about the eye test - still no word.  EKG and blood test?  Still nothing.  Call the neurology MA again, feel like I get in trouble for not having it done.  But you told me they would call me?  Okay, I'll find a place to do it.  Okay, we'll move the start date a week out.  You know I'm supposed to move here right?  Okay, I'll wait to hear from them.  What's that?  That eye place doesn't want to do that test, they need to refer me out again?  Okay, I'll wait.  Oh, now you say I have to set up the other tests.  Fantastic.  I'll do that - oh, wait, no, on the day those are set up the nurse finally calls to get them scheduled at a different place so I don't have to pay for it.  Well, seeing as I'm broke and now have bills to pay, sure I'll take you up on that.  Haven't you done this before?  How am I supposed to know how this works?  Okay, I'll do that then.  Eye test today.

Did I mention I'm graduating tomorrow?

I am so unbelievably stressed out.  I feel like I'm having another exacerbation in the middle of all this.  I am having the MS hugs so frequently that I don't want to eat, which makes it worse.  I'm not feeling as tingly, which is good, but that changes by the hour.  I feel like crying all the time, and finally started now that I'm not at work.  I finished my internship yesterday, and now I have to jump right in to finding a place to live on the other end for my new job.  The new job!  It starts in a month.  I am not ready.  I need a break.  I have no time for a break, now I have to pack to move.  I have no energy.

This feels like a spiral.  I can't get a hold of anything.  There are so many things I want to get done, I need to get done, in the time before we move - and I just can't find the time to do it.  Now my husband keeps asking if I'll fly out to California to find a place to live soon - when am I going to do that?  Why do I have to do that by myself?  Oh yeah, because I'm broke.  Because there's no good way to end up in this situation, but this particularly sucks.  I have no one, I feel so alone, I feel like there are so many people in my husband's life who are not uncomfortable asking him how he's feeling but no one wants to find out how I'm handling it.  So, as a result, the few times I do get asked I end up lying - "I'm doing okay, it's stressful but I'll get through it."  "I think if God wants me to learn something, I better learn it fast, haha!"  "It won't help me get better to sit and feel sorry for myself about it.  Yeah, good for me.  I'm doing well."

Well, here's a confession for you, bloggies.  I'm not handling this very well.  I am depressed beyond belief and cannot bear to think about another poke and prod in the next few days.  I put on a brave face for all these medical tests, but I HATE needles.  I have been doing really well with all of it, gritting my teeth.  But I don't want to be put on a drug that will force me to inject myself every day.  I can't fathom having to do that, but that's where I'll be, since Gilenya is basically just a band-aid until my next neurologist puts me on something stronger.  This is terrifying, I feel weak and unprepared for life.  I spent so much money and time being told that I was destined for great things, and now I feel like giving it all up.  I feel like running away.  HA - running.  I made a running joke.  Get it?  Because now that I have had this last exacerbation, I can't feel my feet anymore at baseline.  Makes running really difficult.  HA HA HA HA HA.

This bloody sucks.  I graduate tomorrow and I don't even care.  I want my family to celebrate without me.  Why do I need to be there again?  My wedding was a cheap bust of a party, so I have been 'planning' a grand graduation celebration ever since.  The MS diagnosis really screwed that up, because now we don't have the money, the friends, the space, etc.  We are going to have a backyard barbecue at my mom's house, decided yesterday.  She is upset that my dad will be there.  It's a family event.  My husband is graduating too, so his giant clan of a family will be there.  They all have small children.  My mom has dogs.  It's turning into a mess really fast.  I don't want to go.  I want to run away, I want to see the new Hiddleston movie again, I want to pretend that someday a good looking British man will look at me and tell me that I'm pretty.  I don't want to feel like the ugly reflection I'm seeing lately, with dark blue-circle eyes from no sleep and poor diet.  I can't afford to eat better, I've had my last paycheck.  I feel like an observer in my own life right now, unable to tap in.  Why can't I tap in?

Thanks for listening, bloggies.  Until next time.

Sensational

The weirdest part of this latest flare up is the lasting sensations.

In the month since the numbness began, it has evolved and changed often, most consistently now like a vibratory spring-like feeling.  For example, imagine striking a tuning fork or a long pipe so that it rings and vibrates.  Then imagine putting that on the bone of your ankle so you can feel the reverberation - that's what my legs feel like now when I move, walk, tap my foot, or have any kind of contact with my feet.  Very rarely do I not perceive some kind of weird sensation - I haven't felt 'normal/nothing' since it began.

It is possible that this is my baseline.  What this means is that my flare-up may be totally over, and this is the lasting damage from that recent attack.  Now I will compare future symptoms to what I am currently experiencing.  But, this could be much worse.  On the one hand, I could still be feeling the tingling in my hands, which was by far the most terrifying side effect.  Like I've said before, I am a musician and an artist, so even beyond what I would need for work, I use my hands an awful lot.  I've always said that if I were to lose a limb, I would never choose either of my hands or my throat, because I am a musician and a singer.

The last few days have been spent at a conference for my profession.  I planned to attend a long time ago; I am presenting a research poster.  The last few weeks have been filled with travel and interviews since I'm about to graduate in May - what a hectic time for all of this to go down.  This has lead me to the conclusion that I have a finite amount of energy each day - some days are more exhausting than others.

I talked to my coworker who also has MS and asked her when she was diagnosed.  There is a family history of Lupus on her side, so when she lost feeling in the right side of her body, it made sense to go to the rheumatologist.  Her sensory absence was so bad that she would accidentally burn herself.  Finally, after a year and a half of this odd symptom, her doctor finally did a nerve conduction study and a typical neurological exam, after which they finally did an MRI.  I can't believe it took them so long to get imaging on her - when it seems like such a boneheaded thing to have imaging done with any kind of numbness or encompassing problem.

What kind of lasting sensations do you have at your baseline?  Have you eventually gotten used to them, or does it still bother you?

Margo