Finally.... A Plan!

I finally got through to my neurologist!

We are going to move ahead with an MRI w/contrast after my baby is born to see if there are any active lesions, and talk about DMD options.  He really only met me in person one time, and I was very healthy, just needed a new prescription from him to keep ordering my Gilenya at the time.  I really can't fault my doctor for not being familiar with me and how my body responded to things like steroids at initial Dx; I'm wanting to be more patient with him.

Out of principle, I had to ask if he thought doing some kind of steroid treatment after birth would potentially improve my vision, and he said no.  It is likely the damage from the initial inflammation in early December has been done, and it's not going to get better unless my nerves decide to heal further.  While this is disappointing, I think I've had enough time to digest this (16 weeks) and I can still create with fucked up vision on the right; case in point:

His name is Dufresne, and I painted him on Sunday.  So I haven't completely lost my ability to make good art, and that's comforting.  It definitely wasn't the same, and painting on the black background certainly made it easier.  I'll have to re-teach myself to paint on light.  Maybe I'll do another Tom Hiddleston portrait study on paper first, to get back in the hang of it.  I've become less patient with my art since I started painting vs. drawing, the drawing takes days where as the painting takes hours.  I'll have to make the time to retrain my brain, and hope nothing else degenerates my vision in the meantime!

Well, here's hoping that I won't have any active lesions when we take a look in April/May.  Fingers crossed!
Love, MSloan

Optic Neuritis - The Saga Continues

Anyone who has ever had to deal with Optic Neuritis will tell you that it isn't clean-cut.  I have good days and bad days with it, and now that it's been 15 weeks since it began, I'm starting to come to grips with the very real possibility that I may never really get my eye back the way it was.

As an artist, this is somewhat mournful, since I don't see detail the way I used to.  Even with both of my eyes together, there is a constant sense that something just isn't right.  Being able to create with your hands is all about how your eyes judge distance - and right now, they can't do that very well.   I haven't painted near as much lately, I have only created three paintings since it happened - nowhere near where I wanted to be.

How I'm seeing, Good Eye Vs. Bad Eye:

When you have something like ON, once you mention it, that's all anyone wants to hear about it.  When it first occurred, my coworkers would ask how my eye was, for about the first two weeks.  When it didn't improve, they stopped asking.  I haven't been asked about it in over 10 weeks.  Not that I need someone to ask about it all the time - but it's another reality that can feel lonely about this condition.  I don't talk about the constant numbness in my legs and feet, the MS hugs, the nausea, the eye, because it makes them so uncomfortable.

That's a consistent theme in my posts because it is by far the most common reaction I have received in regards to my MS - discomfort from others.  It's awkward.  No one wants to talk about it, and it isn't real to them.  It can't "be that bad."  But of course they feel that way, they don't have to live with it!  It just isn't real.  And honestly, it wasn't real to me in regards to my patients until it reached a certain point.  Now I am so much more empathetic when they tell me they are struggling with things they can't see - instead of initially wondering if they are lying, I am now a bit gullible!

My positivity blog is helping with how I deal with the day to day.  I wish I wasn't facing drama at my workplace, but I am trying to rise above it.  It is so petty to fight with one another as adults, isn't it?  There are so many much more important things.

I hope you can use these images as a way to explain to people around you what you're experiencing, or at least give them an idea.  I know everyone's ON is different - this is very close to what mine actually looks like.

About halfway through March - MS Awareness Month is still upon us, keep the conversation going!
MSloan

Looking to the future ...

I'm wondering what to do after this baby arrives.

Should I breastfeed for 3 weeks?  4?  Should I get an MRI and make sure I'm not still having an active lesion from the big Optic Neuritis scare in December, that still has not resolved?  Should I get steroid treatment this far away from the initial injury and hope it improves things?

Where do we go now?  (Cue Guns & Roses)

I'm asking for advice - moms with MS, how long did you wait to get treatment for your MS after you gave birth?  Anyone have flares while pregnant?  What did your neurologist recommend?

Thanks, all!
MSloan

ChatMS - 2/22/2016

Tonight's ChatMS on Twitter was in a different format - forgive me if I forgot some questions or missed some, it was not very clear what questions there were!  (note to the moderators: keep this in mind for those of us who participate after hours and want to follow the conversations :) )

Enjoy away, and feel free to copy/paste to your own blog!  Sorry I forgot last week's, I was so pumped because I actually got to participate in real time that I never went back to put them in blog form!

Q1) As an ice-breaker Q, what is your name and what is your most frustrating symptom?

I don't use my real name on this blog :) But let's say my name is Margo, and by far the most frustrating symptoms I've had have been nausea and MS hugs, both of which I thankfully have not had consistently in some time.  On the plus side, it made morning sickness really easy to deal with because I had so many anti-nausea tricks!

Q2) How does everyone handle fatigue?

I have to learn to say 'no.'  I'm not very good at this, haha!  But when I go out with my husband, either for a walk or a day trip somewhere, I have to know when it's time to go.  If I overdo it one day, I won't be able to function the next! 

Q3) Is anyone on a particular diet? Have you noticed any differences since cutting out certain foods?

HA!  This is one of those things I should be doing, but am not.  I know that certain foods trigger my acid reflux, like certain types of chocolate, and citrus fruits.  But as for real MS symptoms, not really.

Q4) What type of exercise is easiest and benefits your MS the most?

 Yoga, yoga, yoga, yoga.  Yoga all the way.  Not too strenuous for my body and when I do it, I don't feel like I'm going to trip and fall on someone because my feet go numb when I move around too much.

Q5) Has anyone experienced numbness in the stomach & u don't feel when u have to urinate?

Dear Lord, no, but I certainly hope I never have this one.

Q6) Do you guys have set sleep schedules? Or just try to sleep whenever?

Just try to sleep whenever.  Insomnia is a huge struggle for me - now that I'm 7 months pregnant it's even worse!!  Oy vey.

Q7) Does anyone else feel like they have to REALLY concentrate and focus in order for action to happen in the bathroom?

You mean I'm not the only one??!  I have struggled with constipation for so long I can't even tell you.  Pregnancy again makes this one all the more enjoyable.  Most pregnant women don't struggle with this until at least the second trimester and mine has been on a totally different level since about 5 weeks in.  What was already bad was made monumentally worse.  Let's just say I should invest in Preparation H and leave it at that.  #TMI #Sorry

Q8) For those of you that deal with headaches frequently, where would you say it hurts? And what do you do to help?

I used to get headaches daily.  They usually hit around 3 PM or later, and were tension related.  I felt them on both sides of my head, a dull ache.  When they would get really bad, they would last for days on end - just a dull pain, about a 4 or a 5, but nothing would stop them.  After I got pregnant I got an entirely different type of headache - these would hit in the morning, and would hurt on the back of my head as well as the sides.  I never had a headache that wasn't just a continuation of the day before that started before 11 AM - but these were like clockwork.  Knock on wood, hard, I have not had a headache at all since about my 4th month of pregnancy.  I do not look forward to my daily ones returning, and hope it's one of those things that will stay away.

I do get migraines, once in a blue moon.  They give me auras and tend to hurt on one side of the face.  Optic Neuritis headaches are the absolute worse, they hurt behind the eyes, typically on my right side, and not a fucking thing even touches it - not aspirin, not tylenol, not aleve or ibuprofen, the four pain killer groups.  Just wait it out and pray you can see afterwards.  This last bout of ON, left me with only partial vision in the right eye, 12 weeks and still no improvement, but it didn't hurt.  I think I prefer the blindness to the pain, honestly.

Q9) If you could tell your friends/family one thing about MS and they would 100% believe that one thing. What would it be?

My MS is not my whole world.  I talk about it because it makes me feel less alone.  I wish you would ask me more questions so that it wasn't so much of a mystery, and you could understand my perspective a little better.

I'm not faking, and I don't want your pity, or even your attention.  But acknowledgment that this is hard would be very validating.

Q10) Does anyone else feel out of place in a group setting trying to keep up with conversation and making sense when you reply?

I have not had this kind of immediate brain fog in a group, but I've had it when writing, and I have had to counsel patients with it.  I tell them to say "Wait a minute, buffering," while they speak, so that they don't get the inevitable "What?" response.  I had a patient who brought in her husband to have his hearing tested because she was certain he wasn't hearing her - he actually had perfect hearing, he said "what" all the time because her MS caused her to frequently not make sense, and he didn't know how else to tell her so.

Q11) Fill in the blank... I have MS, but MS will never stop me from __________!

Creating, in one medium or another! 

Q12) What's that 1 medication/Vitamin that you believe helps you/your MS the best?

I loved my Gilenya.  As far as I could tell, I had no side effects, and my MS was kept at bay, give or take a teeny bit of toe numbness on particularly stressful days.  It did the trick for me, as long as I could keep my stress level low.  I would like to go back on it after my baby is born, if my neurologist is willing to work with me.

Q13) Does anyone get that feel like you're walking on glass feeling? What helps it?

I only got this a few times with my previous numbness, and it was very disorienting.  Like your foot "waking up," the worst part of it.  But all the time.  I really didn't focus on it because the most disconcerting part was when I walked a few yards, my legs from the knee down would go numb and I would get a spring-like feeling with every step.  So glass-feet is a bit foreign to me, but I know it's real to a lot of MSers.

That's it for this week, folks!!  Tune in next time!
Love, 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