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

Chat MS - 11/16/2015

Hey all!

I didn't get to participate one bit in this week's ChatMS on Twitter - but as someone who doesn't drink, it doesn't look like it really applied to me anyway!  Feel free to copy/paste the questions to put up on your blog.  Remember to keep the conversation going!

I'll put in a few rudimentary answers where I can, but again, I don't drink.  Love to all!

Q1 – Alcohol, depending on amount, can affect the central nervous system. Were you told to stop drinking alcohol after diagnosis?

I was never told this - but I do think it can exacerbate problems (like vestibular dysfunction if one is already prone to dizziness.)

Q2 – Some MSers report worsening symptoms even after one drink. Have you noticed the effects of alcohol being different?

It's odd, but I have!  Just as small as a dose of Nyquil and my whole body feels funny.  So I bet it's good that I don't drink otherwise :) 

Q3 – Some DMD treatments can affect the liver as well as alcohol. Do you take a DMD and still consume alcohol?

DMD means 'disease modifying drug.'  I was not on a DMD that was affected by alcohol but I was placed on an anti-depressant that couldn't be used with alcohol.

Q4 – When discussing different treatments was “Can I still drink alcohol?” one of your first questions?

Not even close - my first question was "can I still fly to my job interview next week?"  The answer was no - it was a busy month and my life was very much disrupted!

Q5 – Do certain types of alcohol affect your MS symptoms in different ways? For example, wine may not affect you, but beer does. 

No comment here

Q6 - Have you found any benefits to drinking moderately when you have MS?

No comment here

Q7 - When out with friends, do you avoid consuming alcohol? Why or why not?  

Not for the purposes of my MS; there are other things I already have to be cognizant about while out with people.

Q8 – Have you heard drinking alcohol may be beneficial to MS? Some studies have shown it slows progression.

I have never heard this, how interesting!  My husband laughed his butt off when I told him this and showed him the attached article.  I have heard good things about marijuana tinctures and MS but have not explored it myself.  At least, not yet!!

Love all! - 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

The Swing of Things

In July, my husband and I bought 20 passes to the local rec center to work out.  We are not big workout people, by any means.  I am a fairly skinny person, so cardio work just makes me feel even more small - I try some weight training, but let's face it, I'm much more of a yoga person anyway.  My husband, on the other hand, is a bit larger (no thanks to my cooking) and has things like diabetes running in his family, so the need is much greater for him to make the effort.  He is a naturally stocky person, so he bulks up like a Viking quite nicely when he puts in a little time - win/win, right?

Well, I've been to the gym maybe once since then, did some running on my own, but let's face it - I'm an artist, a musician, a writer, a scientist.  I am NOT a jock.  I was beat up by jocks.  So working out is pretty much the last thing on my list.  My husband didn't go all summer, and he was home every day (he works in the school systems).

Today was not a great day sensation-wise; I have been incredibly stressed out at the prospect of moving to another state for my new job in June, and finishing a doctoral program by no means indicates that I have money, in fact quite the contrary.  I am broke broke broke broke broke.  Not to mention the imminent medical bill from my ER visit to be diagnosed with MS - what a nightmare.  So yes, the stress is taking a toll, and my legs feel really 'springy.'  It was a bad day for the shakes, and my heartburn was acting up.  I don't necessarily think the GERD is part of it, but I do notice that when I get the shakes, I get heartburn.  So, BLEH.

But, nevertheless, my husband and I went to the gym tonight.  I ran.  I ran and ran.  My legs went totally numb and I still ran.  I stretched my very tight muscles, but kept going.  I did a full lap of lunges, some walking, some butt-squeeze walking, some march walking - couldn't run any more, I gave myself muscle failure, but that's kind of the point.  I haven't worked out in so long.  And I don't want to hurt myself and not know it - it would have been very easy to fall into someone else, lose my balance, or collapse, because I wasn't regulating my legs very well.

Tomorrow, I'll be in a lot of pain, and I'm guzzling water.  But tomorrow, I'll be in pain that I can control.  It's a good feeling.
:)