MS-numbness

Dealing with MS Numbness

After my Optic Neuritis, the second obvious symptom of my MS was numbness. At first, I thought I was dealing with cold weather where my ear chilled and wouldn’t warm up. But when I got into a warm location for an extended period of time and my ear was still numb AND the numbness extended down my arm – something was wrong.

Of all the exacerbations it’s the most annoying but at this point the easiest to deal with for me. Mainly because I rarely encounter it, but also because I know exactly what needs to be done.

What is Numbness?

Numbness is rather self-explanatory: it’s when something feels numb or tingles. This numbness is common for those dealing with MS and is one of the earliest warning signs of Multiple Sclerosis.

Because of the nature of the numbness, it can impact daily life: without the proper environmental feedback, the numbness can make it difficult to walk, pick items up, and in some extreme cases, hard to swallow. That’s why it is important to take these numbness episodes seriously and see your doctor immediately for treatment.

Types of Numbness I’ve Experienced

I’ve already mentioned my ear, but I never really detailed the different types of numbness I’ve experienced throughout my illness. My ear was just my earlobe and the side of my face, but it eventually extended down the entire length of my right arm. Because I was abroad, this was problematic because I had no means to diagnose and treat it until I returned home. While I was in a country with excellent healthcare and experienced with MS, I was afraid I would waste everyone’s time when I was just dealing with some weird psychosomatic stress-induced episode.

Funny enough, that’s exactly what I was dealing with but more serious.

When I returned home I lost most use of my arm. I went to my General Practitioner who sent me to physical therapy. My PT suspected it was Thoracic Outlet Syndrome and so she worked on getting my nerves and muscles to stop spasming. Through her exercises both in the clinic and at home, I was able to loosen up my muscles to alleviate some of the numbness, but it basically went away once the exacerbation stopped.

Part of the problem with this particular numbness episode is that my arm locked up at the weirdest times. I had limited range of motion and I sometimes if I was reaching backward my arm got stuck. I physically could not get my arm to move back into position on its own. I needed someone to help me get it back in front of me if my left arm couldn’t reach. Driving a stick shift was difficult (it was the only car we had at the time), so I had to be driven everywhere for a month or so.

Not long after my arm started recovering did I experience my first symptoms of L’Hermittes Sign. It was at this moment I returned to my GP and shared with them my self-diagnosis of MS. The self-diagnosis was brushed aside, I think in part because of a lack of training, but I accepted it because I didn’t want to be right. Three months later after a hospital stint with massive amounts of steroids, I received my MS diagnosis. Most feelings of numbness and symptoms resolved at that point due to the steroids.

Another numbness episode occurred about 8 months later when I woke up unable to feel my right leg. Walking was particularly difficult because I did not know when I put my weight on my leg. I ended up with an interesting limp because I was so worried about my leg giving out. I borrowed a cane that Ash got as a present so I could walk faster.

Yes, there’s a photo:

I am positive I was making a face because some kids were looking at me weird. Credit: Michelle Melton

I definitely wasn’t as glamourous as Selma Blair at the Vanity Fair party, but it was the first time my mostly invisible illness was visible.

Because I got my diagnosis, I knew what caused the numbness this time. I was put on a high-dose steroid regimen for about a week and I regained use of my legs with no lasting damage. That was also the last time I experienced numbness as an extreme exacerbation. I still experience the L’Hemittes Sign from time-to-time when I am particularly stressed, but I have yet to experience limb loss to numbness again.

The Permanent Impact

While I have RRMS, which means that after each exacerbation I will most likely return to a state prior to the exacerbation physically speaking, there are still chances for me to have permanent damage from the exacerbation. I have mental fog and mild memory loss after one exacerbation, and after losing feeling in my right arm while I was abroad, my right-hand pointer and thumb are permanently numb.

This isn’t enough to impact my daily life so I cannot use these two fingers, but it is a present feeling that I notice from time-to-time. More than anything it’s annoying, but I know that I am very fortunate that this is the extent of my lasting symptoms. It makes my MS that much more real because I know that something isn’t right with me and that this is my normal.

Emotional Impact of MS Numbness

I can only speak for myself, but I know that the numbness is the scariest symptom of MS. Memory loss is awful, Optic Neuritis is annoying, fatigue is frustrating. But because of the actual physical impact of numbness: losing function of a limb which may mean you lose the ability to do a task, particularly favorite task is frightening. As mentioned above, the numbness can also mean difficulty doing basic functions for living like breathing and swallowing depending on what part of your body goes numb.

When I was walking around with the cane, finally able to show the world I wasn’t making it all up, I was a mixture of emotions. On one hand, I was able to show that there was something wrong with me. On the other hand, I was embarrassed and mortified by how visible I felt.

I was 29-years-old and using a cane. I had people giving me “the stare.” I hated how it felt and worked really hard to avoid needing the cane out in public during this exacerbation. Fortunately, once the steroids started working, my need for a cane went away and I gladly ditched it.

But the emotional lesson remained: I have MS and needing a walking device was a very real possibility in my future. At the time I wasn’t doing enough to take care of myself, I wasn’t even on disease-modifying drugs. Losing the function of my leg made me realize that I needed to do better if I wanted to increase my quality of life. After I finished up my steroids, I went back to my neurologist and began taking Copaxone to manage my MS.

I realized that I needed to begin the process of coping with my illness becoming more visible and learn to not be embarrassed by it, but use it as an opportunity to educate others. It would take another three years before I would start my blog, but at that moment I still hadn’t really dealt with the knowledge that I had MS.

The numbness, while more manageable for those of us with RRMS, is the true devastation of MS. It takes complete control over our bodies and makes us never forget that we are dealing with MS. Many other symptoms are easy to brush aside or ignore, but it is impossible to ignore the numbness. When your limbs are held hostage or basic functions are impaired, there’s no denying that you have MS.

For that, numbness is the symptom that scares me the most when I experience it as an exacerbation. It’s the one I think about when I am working really hard to manage my stress to help manage my exacerbations. It’s the one that I think about when I go back on MS medication. I hate the numbness and I hope to rarely experience it again in my lifetime.

Which symptom scares you the most with your MS? Do you dislike numbness as much as me? Leave your thoughts and experiences below.


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When MS Fatigue Strikes

I never realized it, but I was dealing with MS fatigue for a long time prior to my diagnosis. I always thought the fatigue had to do with my depression, which may have been MS related, but I had no reason to look into the fatigue. Once I resolved or managed my depression, the fatigue would go away. I wasn’t sure how I would manage my depression, but it was in the back of my mind “to do.”

The last time I felt energetic, truly energetic and what I imagine it feels like for everyone else, was when I was a teenager.

Every day can be a struggle for me to get things done. It’s something I’ve talked about a lot on the blog, especially the feelings of frustration I get from not being able to get everything done. I have learned to adapt around the fatigue, but the unpredictability surrounding it and what affects it is still a learning curve.

I think I will constantly be working through the frustration the fatigue causes.

What is MS Fatigue?

MS fatigue, or lassitude, is something that happens every day for the majority of people with MS. This fatigue can vary day-to-day and person to person. At this point in time, researchers do not know what causes fatigue, just that it is something that happens more with people with MS (up to 80%).

My completely uneducated, unqualified guess is that it probably has something to do with how the lesions affect our body or the fact that our immune system is constantly in overdrive and attacking itself. Like how we feel when dealing with a cold, the fatigue is our body’s response to the attack.

Fatigue can so negatively impact a person with MS that it may be used as a reason for why a person leaves the workforce early. I know that it made going to a physical job more difficult, one day I had to lie down on my office floor for a nap because I was so exhausted from teaching. I was able to work, but by the end of the day, I was completely worn out because I couldn’t get any naps or periods of rest during the day.

For me, I have my most amount of energy in the morning (with or without a good night’s sleep) and slowly lose energy as the day progresses. By mid-afternoon, I am desperate for a nap and will have a minor surge in energy afterward for an hour or two, but there is no guarantee of that second wind.

Fatigue as a Background Feeling

I have found that the fatigue surrounds me so much that it has become a background feeling for me. There is a level of itchy-comfort that surrounds me every day. I know this is an oxy-moron, but what it means is that I have that weird cozy feeling all day that you get when you are just tired enough. It’s that warm feeling you get where you are just drowsy.

But it’s itchy and uncomfortable because it’s really hard to snap out of it, which is frustrating. My body wants to stay in bed and sleep all day, but my mind is “we have to move and get work done!”

I have learned to push the fatigue to the background for most of the day, working through it, but I know that it makes me cranky at times. That’s where self-compassion comes in, but also where goal-setting helps as well. I think my running training has helped a lot. Besides giving me some extra energy that comes naturally from exercise, it sets a blueprint for goal acheivement throughout the day.

Running creates this blueprint: I need to run to the next telephone pole and then I can walk for a few seconds. When I am so worn out from running a long race, I sometimes have to create these small goals to keep pushing myself towards my personal race goals. In my daily life, it is very similar: I say “I need to complete this task and then I can rest for a few minutes.” When I feel my fatigue winning, I remember that if I can push through it with running so can I push through it in my daily tasks.

Bad Fatigue Days

Bad fatigue days are some of the worst days and moments for me.

I may have a bunch of things on my “to do” list and I will not get more than one thing done on that list. And that feeling of unproductivity can be extremely frustrating and discouraging for someone who likes to get a lot done in the day.

If I do too much the day/night before, I can be wiped out the next day making getting out of bed near impossible. When this happens, I find that I am cranky for much of the day. Unfortunately, because of the nature of the fatigue, no amount of sleep helps revive me. I could sleep over 8 hours the night before, get 4 to 6 hours of naptime and still be able to go to bed early for another full night’s sleep with no relief from the fatigue.

On these days, I feel that my depression hits harder because I am so tired and frustrated with my body.

I get frustrated when dealing with exacerbations, but I find that I am less frustrated with an exacerbation than I am with the fatigue. An exacerbation can be managed with medication, my fatigue rarely can. I’ve tried several different medications meant to give me a boost in energy, but I find they don’t make a dent or make me more drowsy.

Fatigue’s Impact on Emotions

While I might take medication, drink copious amounts of caffeine, run a mile or two in the morning, drink a bunch of water, or just rest in order to raise my energy levels, I find that I get no real relief from my MS fatigue.

The lack of relief or lasting energy boosts is so frustrating and wearing that I think fatigue has the most negative impact on my emotions regarding my MS.

I really wish that I can get more things done during the day. I wish I could have all the energy in the world to do a bunch of things with Jai. I wish I could take a couple extra hours every day to work on my blog and do my daily tasks.

All of these desires lead to my feeling of helplessness and personal frustration towards myself and my MS. Any negative feelings I have towards myself stem from my complete lack of control over being able to get things done in the amount of time I want. I might plan to spend the whole weekend getting caught up on a project and then find both days are spent in bed because I can’t summon enough energy.

With these negative feelings, I have learned to embrace self-compassion as a way to manage them. I recognize that until they come up with a perfect drug to deal with MS fatigue, this is something completely out of my control. I cannot change something out of my control, so stressing over it will achieve nothing, therefore I have to be softer with myself.

On Friday I will be discussing more indepth how I deal with my MS Fatigue in my newsletter post. If you want to read more about my personal solutions to this common MS problem, please sign up for the newsletter here.


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Featured photo credit: Michelle Melton


2019-MS-Awareness-Month

Highlighting MS Symptoms

Normally this post would be for newsletter readers only, but for MS Awareness Month, I am making it available to all readers. Don’t miss a single post! Sign up for the MS Mommy Blog Newsletter today! It’s never too late to join the 2019 Wellness Challenge.


In Wednesday’s post, I highlighted a typical day with MS for me. I didn’t go into much detail of what it was like with each of my symptoms, but I wanted to spend the rest of the month focusing each post on a different symptom I’ve experienced in my MS journey.

The hope is to normalize my experience, both how I felt when I first experienced the symptom, and how I dealt with it. Obviously, what works for me may not work for everyone, but I want to highlight that even in the darkness can there be light.

Symptoms that will be highlighted for the rest of the month: fatigue, numbness, memory fog, Optic Neuritis, stress as an exacerbator, and working through recovery. Each Friday, in the newsletter, I will discuss the way I handled dealing with the symptoms highlighted during the week, so please sign up for the newsletter to read my experiences.

Please contact me if you don’t see a symptom discussed and want to see it highlighted in some way this month.


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A Typical Day with MS

MS is a disease where each person’s experience is different from another’s. With three different types of diagnoses, Primary Progressive Multiple Sclerosis (PPMS), Relapse-Remitting Multiple Sclerosis (RRMS), and Secondary Progressive Multiple Sclerosis (SPMS), the disease can behave differently from person-to-person. Within each type, there are a variety of symptoms that may not be experienced by each person. A typical day with MS will vary, but I wanted to spend today’s post discussing mine.

A Typical Day with MS

If I am in half-marathon training, then I will get up with the alarm clock really early. I typically get 5 – 6 hours of sleep which I know is not enough, but it’s hard to go to bed immediately after putting Jai to bed. I want to spend time with Ash, so I don’t get to bed until 11pm most nights.

My mood and energy are generally fine on these mornings. I keep my exercise gear set out so I don’t fumble looking for it. This allows me to sleep as late as possible before making the 15-minute drive to run with my mom.

After my run, I have to rush back home so Ash can leave for work on time. I will be full of energy at this point, but I start my first cup of coffee for the day. I probably drink 3 – 4 cups of coffee throughout the day and at least one cup of black or green tea in the afternoon to keep my energy levels up. I definitely do not drink enough water, which may be hindering my energy levels in its own way.

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2019-MS-Awareness-Month

What is Multiple Sclerosis?

Portions of this post appeared during 2018’s MS Awareness Month. I have updated to reflect new information.


What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Busting Misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want.¬†If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.
  • You can look and be glamourous¬†despite an MS diagnosis. Just look at Selma Blair at this year’s Vanity Fair party. Using a walking device can double as a fashion accessory and wearing gowns can be a more common occurance. MS does not have to take away your sense of style.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure.

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.


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