Chat MS: October 19th, 2015

Hello, readers!

I have really enjoyed participating in Twitter's "Chat MS," happening on Monday nights at 7 EST.  Because I am on the West coast, this is going to become increasingly difficult for me, as it begins while I am still at work and it was only by chance that I could participate this evening.  So, to keep the conversation going, I am going to make it a weekly regiment to post the questions from Chat MS every Monday evening and welcome anyone to answer them in the comments.  By talking about the issues, we can make progress!

Let's get started!  This week's theme was Women with MS.

Q1: For approximately every 1 male, 3 females get diagnosed with MS. How does this make you feel?

I have always known that multiple sclerosis was more common in women, but it really does feel like a woman's disease.  I have met many women with MS and only a handful of men, and that is likely because I am a healthcare provider.  Though despite the higher numbers of women with the disease, it seems to be much more severe in men.  No disease is truly sexually exclusive, but it would not surprise me if one day we only considered MS a women's ailment, as it is more likely we would find the genetic markers that make those few men more susceptible.

Q2: 86% of women are diagnosed with MS b/w the ages of 16 and 40. How old were you when you were diagnosed?

I was officially diagnosed with MS at 25, after I woke up one morning and my left leg was completely numb, and my right toes were as well.  Though this major problem forced me to come into the emergency room and finally get an answer, I had been dealing with symptoms as early as December of 2009.  I describe this time in my life as, 'when I got sick.'  I went into remission for several years until the episode that brought me to the hospital, though in retrospect I had warnings something was happening in January with frequent MS hugs that I thought was persistent food poisoning; the leg went numb at the end of February.

Q3: When you were diagnosed, did you have children? If yes, what were the challenges you faced?

I did not - and I was terrified that it might me I couldn't have children.  I am in a religious union with my husband, who comes from a large family and always wanted kids.  I was always on the fence.  But now, I had a choice to make.  I had always intended that a year after I graduated with my doctorate, that I would secretly go off the pill and let nature take its course.  That was no longer an option with my MS, since the medications I was taking to stay in remission were not pregnancy safe.  We were very fortunate, however, that when I stopped the Gilenya I didn't relapse, and we got pregnant just outside of the 2 month safety window of stopping the drug.  I am 13 weeks pregnant, and so far things are going well!

Q4: If you do not have children, do you wish to have any in the future? What are your fears being a mom with MS?

Can't take it back now :), but of course there are fears.  I am afraid I will not have the energy to keep up with my children.  I am afraid I will have a flare and my children will end up taking care of me before my time, and that has always been my reservation about having kids; I am in general a sick person, always have been, first as a child and now as an adult with this chronic illness.  It is not impossible that I could wake up one day and have a major problem, or lose my ability to do something I used to take for granted - like walking, running, staying balanced, doing yoga, or even feeling my appendages.  I worry I could lose my sight.  I worry about my cognition.  But I don't worry that my kids might have MS - it is not highly likely to be passed down genetically, and think of it this way: If I chose to adopt instead, and then had a child who had MS, wouldn't that be a kick in the ass?  Shit happens.

Q5: Studies suggest that being pregnant with MS relieves symptoms. Has anyone noticed this?

Yes, though part of that might be the placebo effect of being pregnant as well, because that's common MS knowledge - - I have to admit though, pregnancy comes with its own set of strange issues.  I can't sleep, and am very tired, but not "MS Tired."  I can't feel my arms and my fingers are tingly, but that might be because of the carpal tunnel and pinched nerves in my back because my breasts have gotten enormous.  I have restless leg syndrome, but it doesn't feel like the weirdness of MS.  Time will tell, I guess.

Q6: Women with MS say symptoms get worse around their periods. What symptoms worsen for you during that time of the month?

Hell.  Yes.  I hate that some people really don't think there's a connection.  These are the same people who don't believe there is a connection between menstruation and migraines.  STUPID.  My first major flare happened in the middle of my period.  To this day, my biggest symptoms that hit around my period are severe fatigue and nausea.  Oh, the nausea.  No one believed me that the nausea was because of my MS, but I never felt nausea like that until 2010.  I was certain something was terribly wrong with me and no one listened.  Nausea is not just a symptom because you get dizzy - I am certain this is tied to the same phenomenon that causes MS Hugs.  Which are poorly named.

Q7: Do you take any meds to help you deal with symptoms during your menstrual cycle?

Dude.  Chocolate.  And Excedrin.  I need the tylenol/aspirin/caffeine mix.  But other than that, it's a wait it out system, and I pray I don't have a flare.  I hadn't because I was on the Gilenya, but once baby comes, I am scared of what might happen.

Q8: Women say symptoms like fatigue and bladder issues feel worse during menopause. Have you experienced this?

Whoa there, nelly.  I'm only 27.  Let's take childbirth first, ok?

Alright, everyone!  Your turn!  Love to all, please comment, keep the conversation going - feel free to copy/paste the questions to your own blog and keep spreading the word!
Love all - Margo :)

My, how things have changed...

It has been a strange last few months.

Can you all keep a secret?

In May, I went off my medications.  I stopped taking Gilenya, the Lexapro.  I didn't have side effects coming off the Gilenya - so that's great news for any users out there, no withdrawal symptoms.  The Lexapro was another story.  As a seratonin uptake inhibitor, it can really affect a number of systems all at once because of withdrawal alone.  So I weaned.

Oh.. but weaning is so hard.  I broke my pills in half and took then every other day for weeks.  When I finally stopped taking them, I got bad sweats, terrible dizziness, disorientation, overall feeling of 'ickiness' and felt my anxiety coming back like a freight train.  It's worse now than it's been since I started the pills, which I guess is a great sign that they were working, but in any case it's important to note that side effects with certain drugs only happen when you stop the medications (that is, unless my high cholesterol really was from the Lexapro to begin with).

I went off the Lexapro for a few reasons, and I want to see what happens to my cholesterol when I take another blood test next week.  I have been spending so much time at the lab in Kaiser that they all know me there.  It's that sad, haha, but I would rather be known in the lab than in the infusion center for MS steroids.  GROSS SOLLY HEADACHE.

Well, I might as well get to the point then, shall we?

A little over a week ago, I took a few days off work.  I was staying at home to get some mental health time in as I was continually feeling exhausted at work and was worrying that I might be on the precipice of a flare.  I really needed some time to myself and to think.  But on my first day of my little vacation, I took a pregnancy test.

:)

It turns out that we are expecting, though the whole experience so far has been more than a little nerve-wracking.  I have been spotting for a coupe of weeks and was very concerned - this is why I keep going to the lab.  Nothing at this point is certain.  Well, except for the fact that my B cup breasts have doubled in size and I've gained 10 pounds - and the exhaustion and hot flashes are just nightmarish, let me tell ya.  However I feel immune to a lot of the nausea because of my MS, and otherwise am feeling well enough to go to work and get things done as usual.  The biggest disruption thus far has been my hormones making me super touchy - the strained relationship I have with mom is only that much worse with this kind of news.

I really want to tell her - but I'm worried at the same time, because I need her to be supportive and happy and I am not sure she is capable of that.  Which is such a sad thought.  I have worked so hard to make my family happy and have not succeeded.

I am tired and she is, of course, berating me over email about the same old thing.  I guess she won't find out today that she will (most likely) be a grandmother in April.

Love to all, please send prayers and good thoughts, and keep it to yourself :)
Margo