Numbness in Multiple Sclerosis

An important thing to note about the lovely disease that is MS is that no two people are the same. Meaning, no two people have the same exact symptoms. Some patient’s symptoms get better, leave and then come back to say hello again. Others go and some more linger. It all depends on the luck of the draw! This post will focus on how numbness, paraesthesia and tingling felt and feel for me. Numbness is a very common symptom in MS. Whoop whoop..!

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What is numbness? Well, you’d be surprised how similar this feeling is to me as it is to you. The basics; have you ever felt numb? Have you ever woken up from lying on your hand all night and it feels all weird? Have you ever experienced pins and needles? Surely you’ve had at least 1 of these sensations! Well, now we’ve the guidelines down, let’s go into the details.

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Numbness happens when the nerves that usually transmit the various sensations either gets interrupted, disturbed or just doesn’t get sent at all. Because of this, sensations in that particular area are either lacking, not as prevalent or non-existent. Now, this feeling, or lack thereof, can affect a small enough area like the palm of your hand, a finger, a thumb, or it can go big and affect entire limbs all at the same time. For the most part, it’s just an annoying, frustrating feeling! Imagine feeling this for around about 6 week’s non-stop. NON-STOP. Fun, fun, fun.

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Numbness comes in different sensations. Some people describe it as not being able to feel anything at all. So, I’ll explain that sensation first. Have you ever gotten a numbing injection from your dentist? You can’t feel that certain part of your mouth, at all! Imagine sitting on your hand for about 45 minutes. One, it would be kind of sore, two; it would feel fat or swollen, wouldn’t it? That is how it feels. Your hand feels puffy, uncomfortable almost as though you can’t close or operate it properly. But, you have to imagine that although you can “feel” this sensation, you’re not feeling 100% as you should do if you were not numb.

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What my consultant would do is give me a little prick in my fingers. If I hadn’t been watching where he was poking, I wouldn’t have been able to be 100% certain as to where he was piercing me.  With this numb feeling, it proves hard to get a proper grasp on things such as forks, your toothbrush, simple things like tying your shoes and writing notes etc. You could see that you are holding such tools, but, you just can’t feel it! Be careful, are you holding it too lightly, too rough? It’s impossible to tell!

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I went numb in June of 2012 for the very first time. At first it started in my right thumb, but, within days it had spread all over the right side. It was numbness, and tingling. I had slight difficultly eating. I wasn’t diagnosed at this time, so it was pretty confusing when all of the right side went numb; including up my neck and the right side of my face. I’d bite my tongue, bite my lip, but, I wouldn’t feel it until I tasted the blood. Nice, huh? Luckily I only did this a handful of times. Being extra careful while eating and that kind of thing took a while to get used to, but, I did it. It was pretty weird eating different foods at varying temperatures too. I could only feel half of what I was eating, if that makes sense! I could feel the heat or cold on the left side of my mouth, but, nothing like that on my right side! Sounds pretty dangerous..!

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During this period of numbness I was haunted by the feeling of tingling and pins and needles! Remember I said to imagine sitting on your hand for 45 minutes, then it feels sore and swollen. Now imagine the blood about to rush back into your hand, but, it would never “climax”. It was just that repetitive feeling of blood gushing back to where it should be; continuously giving you false hope of the pins and needles ending. It would drive anyone insane! Constantly wondering when this tingling would go away, wondering how you could feel numb and yet feel pins and needles at the same time? Stop contradicting yourself, Multiple Sclerosis!

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Another feeling of numbness that I can describe would be having less sensation in that certain area. For example, I’m numb on my right side. My left feels 100% of anything it touches. My right would only feel about 20-30% of that which touches it. Sometimes, feeling temperatures would be difficult. I wouldn’t be able to feel the different between hot and cold water while washing my hands. So, I wouldn’t be able to tell if I was burning my hands, or freezing them off!

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Up until this January 2014, I have never experienced numbness without tingling, or pins and needles. This time, heat came to visit me. It started on the right side of my back. You know when you take your t-shirt or pants off of the radiator and put them on? It’s nice a warm. That’s how it started, but, it didn’t cool down. I was confused because I took my shirt out of the cupboard, which is not hot! I thought no more of it, woke up the next morning (Tuesday) and the whole of my right side, bar my face, was numb and hot. No tingling, no pins and needles, just a constant warm feeling. The sensation on this side was much less prevalent than my left side (which was arguably perfect). I did not feel swollen like I did with the tingling that accompanied the numbness as explained above.  It just felt hot! Sometimes it would feel hotter, other times it was just warm. It just depended on my illness’ mood! Another thing that was weird about this numbness was if I brushed off of something metal it would feel like magnets were under my skin and being sucked toward that metal object! Ah, how MS confuses me so. It’s safe to say, that this relapse with numbness was the least pleasant I’ve experienced.  It’s the first time I actually felt pain shooting down my right leg. Walking would hurt and muscles would just ache. My clothes rubbing off of my skin would feel like nails were being dragged along it. Touching a certain part of my right side, like lightly poking it, would feel like I had a massive, fresh bruise on that area. It was sore, it even felt touch was extra sensitive. Contradicting yourself again, Multiple Sclerosis!

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Over all, I would explain the numbness as extremely uncomfortable, annoying and just plain frustrating! I just had to ride it out, which sucked because self-amputation was a serious thought at one stage or another!

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Being Diagnosed

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I sat down, watched as my neurologist opened my chart and then I waited. I felt my heart jumping out of my chest; “be good news, let it be good news.” That’s all I remember going through my head. He looked down at the papers in front of him; drawing his hands together he linked his fingers and took a deep breath in. Before looking me straight in the eyes, his expression changed. His face dropped. “Shit.” I thought to myself.  I knew by the look on his face that he didn’t want to tell me the news as much as I didn’t want to hear it.

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He began to explain to me that the protein they were looking for in the lumber puncture was positive for the one commonly found with Multiple Sclerosis. I froze; my sense of time was non-existent. My mind went completely blank. I remember these thoughts rushing through my mind; “What do I do now?” “What would happen to me?” I can recall a strange “play” dramatize in my mind. I was like the damsel in distress, sitting on a chair in the middle of the room. The room started to get smaller and smaller, fear and uncertainty began to set in. Can you say “overwhelmed”?

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After what seemed like decades, I felt my head begin to nod. I could feel a soft smile wipe across my face and next thing I know I’m hearing my voice, its saying; “okay. It could be worse.” I wasn’t thinking; these words were just coming out of my mouth. It was like an automatic reaction. Who was saying this? Why are my lips moving and where is the sound of my voice coming from?

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Next thing I know my neurologist began to explain the different types of treatment that were available to me. His mouth was moving, but, at that time I remember thinking “I’ll just walk out of the door and when I come back in we’ll try this again.” Yeah, good logic, Karolyn! Don’t be stupid!

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Suddenly, I’m sitting in the car, texting and calling people while being totally absent minded.  “I have MS.” I didn’t even know what it was. Now I’ve just been told that I have it, this was surely just a dream? From then on the day just blended together. Time still had no meaning to me. I recall repeating to myself; “everything will be okay”, just for reassurance and a sense of calm, I think. The last thing that I remember from that day is going upstairs to my room and crying for what felt like hours. Tears rolled out of my eyes until I had no more tears to shed. My whole world had just crumbled and started to suffocate me. “How am I supposed to deal with this?” “What will MS do to me?”

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It’s pretty safe to say that my initial reactions was denial, shock, fear, uncertainty and most importantly, un-fucking-lucky!

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Over the next few days I started to feel a lot of hatred towards myself. What was wrong with me? Had I done something to deserve this? Was Karma just giving me the finger? Then it clicked. There was a voice inside my head that shouted “shut the fuck up and grow a pair!” You know what? I’m damn well glad that I came to that assumption! What in the world was I thinking? Was I a depressing bitch or what? Feeling all sorry for myself was only making things worse! For some unknown reason I was chosen to carry the burden of Multiple Sclerosis. So, I decided, I’ll carry it with pride and by no means was it going to change who I was! I am me NOT Multiple Sclerosis.

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I could have been given 6 months, that’s what I’d tell myself. Don’t get me wrong, it could have been a hell of a lot better too! But, what was this negative attitude doing to me? What was it doing for me? Sweet fuck all, that’s what! From then on, I changed how I felt about my diagnosis. It wasn’t the end of the world. It wasn’t life or death. It was just something that I had to adapt to. Humans are experts at that, after all. So, I caught my upset, denial, uncertainty and hatred, locked it into an imaginary box and replaced those feelings with unicorns, rainbows and marshmallows! Ha..yeah..no. I just took MS in my stride. I wanted to show everyone that I could do it. Multiple Sclerosis was NOT going to defeat me. I would show people that I am stronger than my diagnosis and something as little as MS would not stop me!

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I still get bad days, we all do. With or without MS. I just get back on my noble steed and continue towards the sunset! Laugh and be merry! And all of that shit.

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Navigate Between Individual Posts

Simply click on one of the underlined links and it will take you to your desired blog post.

What Is Multiple Sclerosis?

My Diagnosis – Before

Being Diagnosed

How I Feel About Multiple Sclerosis

Positive Thinking

Numbness in MS

Living with an Invisible Illness

Being a “Fighter”

Knowing Your Limit

My Experience With Fatigue

Sometimes I Forget That I Have a Chronic Illness

Telling People Face to Face that I have MS

MS and Normality

When MS Gets the Upper Hand

Cognitive Defects

Guess who’s back?

Mo Scéal – Before My Diagnosis

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The most prominent thing I remember over the past few years was always being tired. No matter how much sleep I got, no matter how I tried to relax; I would always struggle with lack of energy. Everything from yawning, lack of concentration, focus levels practically depleted and no enthusiasm whatsoever. To be honest, I never really thought that hard about it. I just thought I was lazy!

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The first time I remember feeling weird (this is the only word that aptly describes what you feel when relapsing with MS!) symptoms was in June of 2012. At the time, I had no idea that or if it was anything to do with Multiple Sclerosis. I’m not going to go into details about these symptoms yet, I’ll be saving that excitement for a separate blog! Anywho, the whole right side of my body went numb. Yes, ALL of my right side and yes; NUMB. This lasted a little over 6 weeks. I visited the ER with hopes of someone telling me what it was. The doctor there said that he was “puzzled” and thought that maybe it was “viral”. Good job, Doc. Good job.

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In December of 2012 I had my first experience with optic neuritis. This is a condition where inflammation of the optic nerve occurs and it causes a complete or partial loss of vision. Luckily enough, I only had partial loss of vision for about 4 weeks in my left eye. Can you say “annoying”? As if thinking I was going blind was bad enough, in the first 2 weeks of January 2013 I got what is known as “spasticity”. This was by far the toughest relapse I have experienced to date.

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I know what you’re thinking “wow, has she got a good memory or what?!” 😉 But, stop, you flatter me!

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So, on the 15th of January I was admitted to hospital. Suffering from severe muscle spasms on the right side of my body, I would spasm every 15 minutes. Whenever I would change posture, another spasm would “activate”. Let’s just say that it was not very pleasant. Long story short, they took blood tests, did a lumber puncture, and I had 3-4 MRI’s taken, EEG’s and ECG’s, the lot! Eventually, I was put on a 3 day dose of steroids and was released on the 21st of January 2013.

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On the 7th of February 2013 I was officially diagnosed with Relapsing-Remitting MS.

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My next blog will focus on my diagnosis and how I felt, acted, thought etc.

What is Multiple Sclerosis?

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You can search the internet for days and look for the definition of MS. Trust me, I’ve been there! Looking at so many different explanations it only confused me more. So, let me try to dumb it down for those of us who are not studying medicine!

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Multiple sclerosis or MS is a chronic disease that affects the brain and spinal cord; these are two components of the central nervous system.  What is a Chronic Illness you say? It is a long-lasting, long duration condition. Chronic diseases can be controlled, but, unfortunately there is no cure, as of yet (let’s stay positive!). Anywho! Because of the affect that MS has on the brain and spinal cord a lot of people have difficulties, such as, impaired or loss of:

–           muscle control

–          vision

–          balance

–          sensation (numbness, tingling, burning, itching etc.)

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Want to know the worst part? Our own immune system is the thing causing all of the damage to our nerves in the brain and spinal cord! As a result of this, Multiple Sclerosis is known and assumed to be an autoimmune disease.

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Are you still with me? You can do it, keep going!

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Now, an autoimmune disease is basically where your body’s immune system (which is usually our protector) targets and destroys foreign substances in your body (like bacteria and such). For those of us lucky enough to have MS (yeah..), this so-called “protector” makes a silly mistake and attacks our good/normal tissue in the brain and spinal cord.

Now, remember how I was talking about the symptoms above? This next part will explain how people get these weird symptoms.

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So, let’s talk about the central nervous system (CNS), shall we? This is made up of nerves, these nerves act like the systems messengers. For example, your brain tells your hand to grasp the handle of your cup of tea, so, you do just that. These nerves are surrounded by a type of fatty substance called myelin. This little stuff helps to protect said nerves and helps deliver the various messages to parts of our body. From A to B; the brain to parts of the body. Like text messages or emails! These little messages control muscle movements like walking, talking etc.

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Because of this, the myelin breaks down and/or becomes scarred. This distorts or even blocks the flow of messages, which results in the many symptoms of MS. Sounds fun, aye? Many people explain MS like a faulty electrical flex on a kettle, or like a faulty wire.  The nerve can be compared to an electrical cable; the axon, or nerve fibre that transmits the nerve impulse or message, is like the copper wire; and the myelin sheath is like the insulation around the wire. If the insulating flex breaks, it exposes the wires underneath making them more vulnerable to damage.

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I hope that I helped shed some light on the way Multiple Sclerosis works on the human body!

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