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

Chat MS - 11/09/2015

This week's Chat MS dealt with weight gain; I missed the live chat, but hopefully this keeps it going!
If we don't talk about it, progress has no chance!  Please feel free to copy/paste to your own blog to include those who don't participate in weekly Chat MS.

I haven't experienced weight gain as a result of my MS, but I have had other symptoms that are semi-related to this.  I will do the best I can to stay relevant with these answers!

Q1 - Although it may be overlooked, it’s common for MSers to gain weight. Have you experienced weight gain since diagnosis?

I was fortunate in that it didn't give me weight gain, at least not a noticeable amount.  Being pregnant is much worse for the figure :) but I am a stress starver instead of a stress eater, which might have been the biggest reason why instead of gaining weight, I lost weight after my diagnosis.

Q2 – Weight gain can be contributed to fatigue making it difficult to stay active. Would you say this contributed?

What kept me from being active the most was not fatigue, though that definitely played a part.  When I exercised, my numbness got worse.  I couldn't feel my legs - at all.  I felt very unstable.  It's really hard to run if you can't feel your feet AND your legs - I ended up doing a lot of yoga which didn't exercise me as well as I wanted it to, and I was afraid I might tear something because I couldn't self-monitor my limits as well.

Q3 – A side effects of steroids is also weight gain. With steroids commonly used for relapses, have you noticed this?  

Nah - worst effect with the steroids was no sleep, dead tired during the day, and altered taste.  Yuck!

Q4 – MS can cause weight gain, yet being overweight can worsen symptoms. Have you adjusted your lifestyle do to weight gain?

No comment here -

Q5 – Have you noticed a difference after changing your eating habits and/or exercise routines? If so, in what way?

I have to say - I had to change my eating habits because I was chasing the causes of certain exacerbated symptoms.  My MS hugs were nauseating and debilitating.  They would come in waves throughout the day.  I then found out my gallbladder was somewhat on the fritz - they wanted to remove it but I didn't understand why no gallbladder was somehow better than an organ that worked a few percentage points lower than 'optimal.'  I had odd lower-right pain that felt like an ovarian cyst - but no cyst.  It was very painful.  Appendix was fine.  Now, I'm doing okay without pain and I tracked down the cause of what I was calling MS hugs for so long - - an overload of almonds would set it off, as would my Centrum chewy multivitamins.  Who knew?

Q6 – Yoga is great for symptom relief, fatigue relief, and weight loss. Have you done yoga? Any particular yoga program?

I love yoga - but I wouldn't do anything other than gentle yoga until my numbness subsided.  It is so easy to hurt yourself if you can't feel your muscles saying 'stop,' and the whole point of yoga is to stretch.  You can end up giving yourself a problem you don't already have, so be careful!  But I have to say, when I started doing yoga (and my wonderful husband did it with me), I loved that I was moving muscles I didn't know I had.

Q7 - what other tips or advice would you give to MSers who are are experiencing weight gain?

My biggest advice would be to try not to stress about your weight on top of everything else you are dealing with.  Your body is trying to heal.  If your body gains weight after steroid treatment, the swelling will go down.  Don't panic, and definitely don't overwork yourself.  Save your spoons, so to speak, and listen to what your body says!

That's all, folks!  Love to all -
MSloan

Qualifications

Well, my JC virus antibodies came back positive, which means I can't be put on Tysabri.

Oy, one big, fat, OY!!!

I am going to see my neurologist tomorrow and discuss some other options, though I don't know what will be suggested if Gilenya wasn't 'aggressive enough.'

Any thoughts?  Sorry for the short post, I will have more details tomorrow.
Love all - -

Short Circuit

The unknown is the scariest part of this process.  When things start feeling better, sometimes they are not, as I learned recently; I thought my flare up was over, and I was finally healing and at a reasonable baseline, only to find out my lesions were continuing to spread.  Yeah, there's the big one, but there's another one as well, and now one in my cervical spine that gives me bad tingles when my neck is arched forward.

Today the sensation is just... well, numbing.  An absolutely constant tingle in the legs that is distracting.  It feels like they are being rushed of blood, which makes you not want to stand or walk - psychologically, it can make you feel disabled even though your motor skills are exactly the same.  Like a short circuit in someone electronic, there's power going to the components, but they just aren't working properly.

It doesn't help that the oral steroid I'm taking absolutely tanks my blood pressure.  I have to maneuver a fair amount at my job, and after standing up after looking in someone's ears this morning, all I could see was stars. Now, since I've been dealing with trouble symptoms like dizziness, nausea, seeing stars, lightheadedness, and general malaise for the last four years, I have become a master of feigning being okay while chatting up a person - and then suddenly coming up with a legitimate excuse to leave the room for a moment.  But nevertheless, it is embarrassing, and it didn't put my day off at a good start.  Yesterday I had pretty hard chest pain in the middle of an appointment and had to just keep talking through it, and then later today someone wanted essentially the entire mechanism of hearing explained before their test - usually I absolutely LOVE that part, but today I was worried about passing out.  Just a bummer in general.

With the new issue of leaning my head forward causing more tinglies, it makes me apprehensive to say I'm doing better.  I have to put faith in these steroids, but at the same time, I am not so sure.  If I feel better without the drugs even if my MRI shows I'm 'getting worse,' which is the lesser of two evils?

I wish I got the medical bill in the mail already.  All this waiting is driving me nuts.  I know I can't afford it, but I would rather know just how much I can't afford, know what I mean?

Lhermitte's Sign

Cool!  Being a scientist can make some of the more interesting parts of MS exciting, despite how disconcerting it can feel.

Today, I had my first experience with Lhermitte's sign, a shock-like sensation from the back of the neck through the extremities, brought on by a particular flex of the neck.  I had honestly been keeping my eyes out, or senses out rather, since I first read about it after my diagnosis.  I wasn't sure I would ever feel it, as many MS patients never do.  So it was surprising today to say the least!

I was at the infusion center for my last dose of Solumedrol.  The tapering drugs they gave me for this upcoming week are like a bad math problem, but at least they are packaged in such a way that is easy to understand for the most part.  But that's irrelevant to this post, back to the sign!

I was leaning forward to grab something on my iPad while at the infusion center, when I noticed that my legs became much more numb when I leaned my neck in.  Just bending forward didn't do it, it had to be both the back and the neck, like tucking my chin to my chest.  It isn't painful, at least not what I've got not, just strange to manipulate the dizziness I was feeling by moving my neck.  When I stand, if I tuck my neck downward, I feel nothing - I can only make it happen while I'm already sitting down.  I don't know what my last MRI report said, but this is usually indicative of a lesion in the cervical spinal region.  SO I must have one of those too, seeing as the nerves freak out when I move my neck - but still interesting nonetheless.

Have you ever had an interesting experience with a 'typical' ms symptom?  Did you know what it was the first time you felt it? 
- Margo

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