Heat, Headaches, and MS Hug

For the past several days I forced myself through my workday and the things that I had to do. Unfortunately, I was unable to do any posts, work on my essay for the writing competition, or read because I have been battling a headache that seemed to be never-ending. Anytime I thought it was improving, I was proven to be incorrect when the massive pounding in my head returned with a vengeance.

Many of you reading this post today and may have visited my site before are already aware that I have Multiple Sclerosis. Anyone new to my site, thank you for taking the time to visit and I hope you will return. I enjoy writing about various topics and hope you will enjoy what I write about as well.

I have lived with Multiple Sclerosis for over 20 years, so basically more than half of my life. Over all these years, I have had numerous challenges, setbacks, disappointments, frustrations which fueled stress, and enough tears to fill the ocean. The one thing I have not experienced is giving up and letting MS control my life.

One of the main reasons why I refuse to give up is I made a promise to my late grandfather shortly after my diagnosis that I would always continue to try to move forward, and I would never surrender to MS. Although he has been gone for almost 9 years, I will continue to keep the promise I made to him. It might help that I am also extremely stubborn and obviously a born fighter, just not the violent type of fighter😊!

During the 20-plus years of living with MS, I have dealt with vision impairments, numbness, various forms of pain, stress from the harshness of symptoms, fears from potential disease progression, changing and deciding the right medications, relapse, neuropathy, doctor’s appointments, dizziness, and much more. Most of my pain does not prevent me from living my life and I just push through it and try my best to ignore it. After all the years of experiencing head pain, I am still unable to tolerate it. Unfortunately, it does not matter how many headaches I have already had in my life or how often I battle with them in any given week, the headache always wins our war.

There once was a time when I had a headache, I could take Advil and lay down with an ice pack for an hour or so and the headache would be gone. I wish I could explain how much I miss those days! Unfortunately, over the past few years, nothing provides me with any relief. Although I had many reservations, I ended up trying everything my doctors recommended, but they were all a complete waste of time and money because they did not help. I have tried combinations of over-the-counter medications, such as Advil, Excedrin, and Sudafed, which have helped more than anything else.

Over the past several days, not only was I dealing with the headache straight from hell but the invasive tight band feeling also known as the “MS Hug” visited me. The only good thing about COVID was social distancing, but I guess the MS Hug did not get the memo. I am just speculating, but I think I am experiencing the tight band feeling because of stress, the insane heat, or a nasty combination of the two.

This outrageous and uncontrollable heat is my enemy because it always causes me to feel awful. Over the weekend, I had to run out to two different stores and when I finally made it back home, I told my husband I am not leaving the house again during the day until at least November. I am pretty sure if the temperatures get any hotter, it will be the death of me. I do understand that this massive heat is being felt all around the world, and I do not think anyone can say global warming is not real anymore.

How are y’all handling the incredibly dangerous heat? One thing that I believe helps is to stay hydrated. I have four different stainless steel insulated water bottles. I fill the bottles about a quarter of the way with water and put them in the freezer. This makes it so I always have ice-cold water handy! I strongly recommend them, especially during the summer months. These stainless-steel insulated water bottles are very affordable on Amazon and there are any colors you can think of😊!

Another thing I recommend during these HOT summer months is if you must leave the house, start your car, and let the A/C run for a few minutes. It is never a good idea to try driving when you are hot because you could get overheated, which can cause you to feel dizzy and faint. The heat can do some terrible things to our bodies and minds, so it is best to do everything we can to stay as cool as possible.

Thank you for visiting my site today. I hope what I have shared was helpful for you. If you have any other suggestions regarding staying cool with these drastic temperatures, please share. Also, if you have experienced the evil MS hug, is there anything you do that helps? I am looking forward to reading your comments and I will respond as soon as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Sunday thoughts

Full disclosure and I am sorry in advance. I know I am mentioned the following statement multiple times over the years, but it still stands to be true, and I feel is worth repeating. Although life can be complicated and exhausting at times, life is short. No matter what we go through or how overwhelmed we feel, we should never give up and must do what brings us the most joy. We do not need to explain ourselves to anyone because this is our life. Other people may not agree with how we live our life or any of the decisions we make, but no one needs to understand why we made certain decisions. As long as we are not causing harm to anyone else, it should not matter how we are living our lives. 

Over the past several years and the first days of knowing what COVID was, and the damning effects it inflicted, many have been stressed and scared. These feelings are normal because COVID has killed so many. I am sure everyone has heard another strain that is more contagious making its way through the world. The new strain BA.5 has caused illness in people that have been vaccinated and boosted, which has been upsetting. However, we all must keep our vaccinations current because, without them, the chances of survival decrease significantly. It does seem as though anytime we think we have seen the last of COVID, something new appears.

I do understand that many people were hesitant about the COVID vaccine when we were first introduced to it, and many refused to get the vaccine because it was so new. We are all entitled to our opinions, but if we look at how many unvaccinated people have died when they got COVID to the number of vaccinated people that had a breakthrough infection and survived, it seems like an easy and logical decision. Scientists have stated that those who get the newest strain of COVID that are vaccinated have experienced less severe symptoms and heal faster than those who are unvaccinated. Recently, a friend of mine got sick with COVID. She has an underlying condition and was double vaccinated and had the booster, she has made a full recovery but might not have if she was not vaccinated. I think the decision to be vaccinated or not is a gamble with our lives and I am not a gambler!

Another issue everyone around the world is experiencing is the unbearable heat! Yesterday I had to go out to do a few things, which I normally do not have to do. The heat was so awful that walking from my front door to the truck caused more dizziness and irritation. Do you wonder why the heat is so out of control? Is there any doubt that global warming is real? The healthiest people in the world cannot tolerate this heat, so for anyone who battles with health issues, it can feel like their life is being sucked out of them. Extreme temperatures have always caused me additional problems with my Multiple Sclerosis, but the extreme heat is making things 100 times more intense. I told my husband yesterday that I am not leaving the house during the day anymore until at least November. I did look ahead at what the weather was going to be like next week and it looks as though more miserable days with heat are coming!

What are some of the most important things in your life? Do you think anyone should have to explain why they love who they love? Does it seem like there is too much hatred filling this world? I am unable to understand hate and I do not think I ever will understand it because, in my opinion, we are all human and deserve to be treated fairly and with compassion. We will never know what someone else is going through in life unless we try. Sometimes a person will have an unpleasant attitude because they are struggling with something in their life, but it is possible they just need someone to understand and offer them love. Do you ever think that being kind to another person might have a HUGE impact on their life and make a difference? I do without a doubt!

Thank you for visiting my site today. I hope you are having a good weekend and staying safe. I am looking forward to reading your comments and hope that you have enjoyed this post. I will respond to all comments as quickly as I can. It is a little sad the weekend is becoming to an end soon and we will be getting ready for another long week, but if we view each week as an opportunity, it might make it a little easier😊! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Just another day in paradise

Despite having lived with Multiple Sclerosis for 20-plus years and understanding it more than I wished, there are still times I get discouraged and frustrated. Of course, I understand that most of the symptoms that make me feel this way will subsite in time, they can be difficult to tolerate. Something worse than normal, and I have been forced to endure for the past several days is the neuropathy in my legs. I should be used to dealing with this because it is not new, but it does not get easier. Lately, it has been painful to walk and even sit down the sensation of tingly, pain, and the “spider dance party” on my legs have been almost unbearable. Considering I have been dealing with this for years, I can almost guarantee the reason for the increased issues is due to heat and stress.

Another issue that is not new but has been returning frequently is dizziness. It used to happen more later at night, but for the past few days it comes on suddenly at random times throughout the day. The only way I learned how to deal with this is to sit down immediately (to avoid falling), never lay my head backward, and or force on a still object. I already know I will get extremely dizzy if I lay my head backward, so I try to never do this. Heck, I also know when I go to the neurologist, they always have me do this, even though I explain what happens. It seems many doctors do not listen to their patients; you know the one that knows more about their body than any medical school can teach?

Many things can make Multiple Sclerosis symptoms flare up and we need to learn how to avoid these issues as much as possible. Summer in the south makes avoiding the heat pretty much impossible. Anytime I must leave my house and get in the car, I make sure to never drive until the air conditioning has been on long enough for it to not be too hot. How do you avoid heat when there are more hot months than cool months?

Stress is also a HUGE factor. Stress can make old symptoms return and create new evil symptoms. I am still learning how to avoid stress, but for me it is impossible. Everyone already knows that stress is a silent killer, but what it can do to Multiple Sclerosis is miserable. I know many of the reasons I have had awful relapses previously were because I was stressed about work, life, medication, money, and many other issues we all face.

Something else I have always had a hard time with is fatigue. It is hard for me to sleep most of the time and even more so during the insanely HOT summer months. I do try getting enough sleep, but it hardly ever happens, which more than likely has something to do with the inability to turn my mind off. Unfortunately, my mind is always racing, and I have not figured out how to stop this. It does not matter what day it is or what time I go to bed, I am awake at the same time every single day. If I am not awake at a certain time, the cats will play their part and force me to wake up. The truth is, I tend to wake up early anyway because of the pain I experience.

Finally, pain is a major burden in my life. I deal with pain in multiple parts of my body 24 hours a day, 7 days a week, and with no breaks. The crazy thing is, that I would not feel normal if I did not have pain. Of course, I would love to have one day or even one hour when I was not in pain, but it is not in the cards for me. I try to embrace the pain and just ignore it the best I can. My logic is, why focus my attention on something that is not going to change and use up the energy I do not have I have for something cannot control when many other things need my energy and focus? Great way to think, right?

Thank you for visiting my site today. I hope you are having a wonderful and safe long weekend, so far. I would love to read your comments and any advice you have regarding what I have shared today. I promise to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

What do you do after a bad week?

The truth is, we all have bad days that can turn into a bad week. Unfortunately, last week was one of the worst weeks I have had in a long time. I was thankful for the week to end, but I am still struggling to forget and let go of all that happened. It is not easy to let go of things, even after you take full responsibility for your actions. Guilt and frustration can be consuming and almost make you feel like you are drowning.

After my fall on Tuesday evening, the week seemed to spiral out of control into nothing positive. The fall was terrifying and I should have done things differently than I did. I knew I was having dizzy spells and should have gone to bed instead of trying to do anything else. I know from past experiences what can happen if I continue to push myself when I feel dizzy and yet, I did not do what would have been logical. I have lived with Multiple Sclerosis and the issues that come along with it for over 20 years, so I know better than to keep pushing when things such as dizziness arise.

Another issue I should have recognized is that I was not allowing myself to get enough sleep. When we are sleep-deprived, things never go well. Our behaviors and way of thinking are compromised, which causes other awful things to occur. I had been pushing myself so much with my new job and allowing myself to be drained by stress and for what? I know that I am still new with this job and learning more daily, so allowing myself to be swallowed up with stress only creates more issues and my health to deteriorate.

Thank you for visiting my site today. I hope you are enjoying your weekend, relaxing, and doing what brings you joy. I am using this weekend as a time-out to recuperate and refocus because I know that is what I need. Life is too short to spend it stressed, especially because of a job. I am looking forward to reading your comments and will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Massive Dizzy Spells and the fall

For many years dizzy spells have been a common challenge I face. I have been able to find ways to shorten the duration of these spells, such as sitting down immediately or focusing on a still object, which works about 75% of the time. Unfortunately, on Tuesday evening nothing was helping and when I “attempted” to sit down on the floor, I somehow ended up hitting my head, arms, and legs on a hard object.

I am not 100% sure what happened because I was in a daze, scared, and extremely confused. If I had to guess, I would say my head hit the corner edge of the nightstand and while trying to catch myself and prevent the fall, my arm was collateral damage and hit the nightstand as well. It is obvious my head hit something rather forcefully because I have a bruise and swelling on my forehead. Also, my bottom lip is swollen with a nasty laceration. I do have sore areas on my scalp, which made washing my hair very painful.

I had to work the day after this exciting event and was unable to focus. There was not one part of my body that did not hurt. It is not easy working when in the amount of pain, I was in, but I am new with the company and refused to call out sick. I mean, I work from home, so I do not have to go anywhere or see anyone, so why call out? The entire day, I had two speeds, slow and stop, which ended up being stop for much of the day! YES, this made for an extremely LONG day!

Thank you for visiting my site today. I hope your week is going well and you are taking care of yourself. Never forget, YOU are important, and you cannot take care of others if you neglect your health. Yes, this is something I am awful with. I look forward to reading your comments and I will respond as quickly as I can! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Frustrations of living with Multiple Sclerosis

Living with Multiple Sclerosis has been challenging and frustrating at times. Yes, the disease itself is painful, but many do not understand the symptoms and how they affect daily life. If someone does not have the disease, they are not able to fully comprehend what it is like to deal with the symptoms. Even those that are closest to me and see me daily but do not suffer with the consequences of the disease have a difficult time knowing what it is like to manage. Many people I meet would not even know that I have Multiple Sclerosis because I look perfectly normal, but underneath the mask I wear is a battle with my own body. 

When your body manages to attack itself and you have no control over the symptoms, it can be challenging to explain to others that do not understand because they do not have to endure the difficulties. It is not easy when you have no control of how your body reacts to the pressures in life or even to just being awake. I have said to some that they would not understand unless they could live in my body for one day, but most could not handle it well at all.

One extremely frustrating symptom is the constant feeling of fatigue. It does not matter what time I go to bed or how much sleep I get (which is normally NEVER enough), the fatigue issue consumes my life. I can say that it does get worse as the day progresses and by about 1:00 PM I need a nap, so by the time my husband is ready to have dinner and watch a TV show I am spent and exhausted. I have explained this to him numerous times, but it does not register to him, and he continues to want to have dinner and watch TV or a movie later at night. I guess I can understand this because he does work nights, but I still think there needs to be some compromise and meeting in the middle.

Another frustrating symptom is the never-ending pain. Being in pain 24 hours a day, 7 days a week with hardly any relief is not easy. I try to ignore the pain, but there are times when it is extreme and overbearing, and I am unable to ignore it. Pushing through the pain when it is at the worse and it is hard to stand, or move is immensely demanding. Heck getting out of bed when I know what the day holds, is aggravating and irritating. It is not that staying in bed would help much because just lying in the bed, I still hurt! 

The issue with neuropathy is also a challenge. The feeling of pins and needles or spiders crawling around on my legs and feet is hard, especially because NOTHING helps. I am already maxed out on the medication that is “supposed” to help so how can I have hope for relief, when the medication that should help the neuropathy is not helping? I know it is best to believe things will improve, but it has been many years of this, and it is not coming to an end.

Thankfully, even though I do experience dizziness frequently, I have learned how to cope with it. I have learned that when I do get a dizzy spell, if I focus on a still object, it will help to get the dizziness under some control. However, when it happens when I am driving, it can be a little terrifying, but then I will focus on the lines on the road and manage to stay in between the lines.

I am sure there are other symptoms are not easy to handle, but the one I want to mention is the headaches/migraines. Out of all the other types of pain I endure, this is probably the worst and the only one that will have me in the bed for hours or at least until it gets better. Most pain is something we can learn to deal with, but headaches/migraines I have not been able to learn to deal with and I have been experiencing these since I was a child. I guess when the pain is concentrated on the head, it starts to affect the way we think and communicate.

I know that stress is my biggest enemy and not a friend to the Multiple Sclerosis. The only thing that stress does is make any symptoms with MS more intense. Right now, I am trying to get my medication that helps keep the MS at bay but going through the process and jumping through all their hoops is stressful. This is a medication that without the Gilenya Go Program would cost about $8,000 per month and that is not something any normal person can afford. Unfortunately, I only have enough medication to get me through until Saturday and then I am out. This medication has done well keeping the MS under control and being off of it will only cause me stress.

Thank you for visiting my site today. I hope you found this post helpful with understanding the frustrations of living with an uncurable disease. This post was meant to be a quick overview of the complications of living with Multiple Sclerosis. I would love the change to read your comments and will respond to all of them as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Challenges with Multiple Sclerosis

I think y’all already know that I have had Multiple Sclerosis for over 20 years and for the most part I am still going strong. Honestly, some days are worse than others and most issues are triggered by either the weather or stress. I do not like having a pity party but wanted to quickly explain what I think are some of the most challenging aspects that come with this illness. Thankfully, over the years I have been able to get a much clearer understanding of what MS is and what it can do to a person. Crazy as this might sound, this has been good because when I was diagnosed, I was very ignorant to this illness and had an immature mind, but I was young and that is my excuse for my childlike thought process.

Of course, I do know it could always be worse and I am thankful it is not any worse than it is, but that does not mean it is not challenging and frustrating. The issues I am going to explain are not in order because I cannot say one is more challenging than the other, as they can all be grueling. No matter how challenging and or frustrating these issues are, most can be managed or at least I try to ignore them.

Multiple Sclerosis can be incredibly unpredictable, which can be burdensome. Never knowing what to expect or when it is going to strike is unnerving. It is embedded in my mind to have things planned but living with the unpredictability of MS can force plans to be altered or cancelled. Of course, with COVID there have not been many outings planned and I work from home, so life just keep moving along.

This illness is not something new and even though there have been vast amounts of research done, a cure has not been discovered. I dream that a day will come when I wake from the nightmare of Multiple Sclerosis and I will not have anymore pain, weakness, numbness in my legs and feet, dizzy spells, or any of the other awful symptoms caused by MS.

Another issue that can be exhausting is the constant pain I feel in my legs and mid to lower back. This has been something the MS caused since I was diagnosed, so I try to not allow it to impact my daily life too much, but it does still cause difficulties. I would say the leg pain is a lot harder to deal with than the back pain because leg pain makes moving around extremely laborious. The back pain is awful, but most of the time a heating pad helps relax the muscles.

I also experience neuropathy in my legs and feet, which causes an annoying tingling sensation. This issue is not easy to ignore because it is constant. It does not bother me as bad during the day but gets increasingly worse at night. The tingling feels like spiders crawling around my legs and feet and not too much decreases this issue. The neuropathy issue makes falling asleep and staying asleep very challenging.

Another issue I battle with is fatigue. It does not matter how much sleep I get, which is never as much as it should be, I am always tired. I have noticed this gets worse towards the afternoon and I start losing my focus because I am exhausted. I arrange my work tasks, so the most in-depth things are handled in the morning when I am the most alert.

The hug I never want is called the MS hug. Thankfully, this is not something I deal with daily, but when I do it is miserable. It kind of feels like there is a snake wrapped around my abdomen and continues to squeeze. It is uncomfortable and painful. For the past few days, I have been battling with this and ignoring it is not making it stop. However, I do think my specialist is on a need to know and I do not think she needs to know about this because I do not want her trying to force steroids on me as that alone makes me feel terrible.

Although I have lived with this disease for over 20 years, some of the fears I had in the beginning do still haunt me. I wonder will there ever be a cure, how much longer will I be able to walk for until I am in a wheelchair, is this disease going to end my life someday, and many more questions run through my mind. Even with all the unanswered questions, I am still never going to give up and allow the MS to win the war we have been fighting.

Thank you for visiting my site today. I hope you have enjoyed your weekend and you were able to do what brings you the most joy. I hope what I have shared with you today will be give you some comfort and help you with something you are dealing with. I do not normally share posts that might come across as complaining, but I do want everyone reading to know that no matter what you might be struggling with, there is someone that understand. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Beat The Heat

As y’all already know March was Multiple Sclerosis Awareness Month. Even though March is almost over, MS for me and everyone else living with this illness will continue to battle with the challenges that come along with it. With that being said, I do want to share a few additional posts to further explain the struggles that Multiple Sclerosis creates.

One thing common with those with Multiple Sclerosis is heat intolerance. Simply taking a hot shower, spending too much time in the sun, or possibly making a hot meal because the stove and oven can make the kitchen extremely hot. The reason people with MS are sensitive to heat and temperature changes is that MS causes nerves to lose their conductive coating, which is referred to as a myelin-sheath.

Heat issues may cause a person with MS to have an escalation of symptoms such as dizziness and/or increased heart rate. I am going to share 6 tips that may help you to defeat the brutality of the heat enemy. Some of these tips might seem like common sense, but they are important to mention, or at least I think it is.

Stay Inside:

Logically, this makes perfect sense, but the warm summer months are closing in on us relatively fast and this needs to be very well understood. Staying inside with the air conditioner or at least fans may contain MS symptoms. Be sure to pay close attention to the forecast and avoid outdoor get-togethers when it is too hot. It will be much better for you and your health to stay inside when the temperatures and humidity increase because you do not want the symptoms to get too awful.

Utilize Cooling Products:

There are numerous cooling products available online and in stores. The MS Society has cooling vests, wrist, ankle, neck, and head cooling packs. These are fantastic cooling packs that can help you to tolerate the heat and even make picnics possible. Something as simple as a cloth dipped in cold water and applied to your head can make a remarkable difference in the way you feel.

Ice Cold Beverages:

On those insanely hot summer days, there is nothing better than ice-cold water with or without lemon. It is amazing what powers and benefits can be had with liquids. Aside from an ice-cold beverage, you may also experience relief from popsicles, ice cream, or frozen yogurt. To save time walking to the kitchen at night and searching for something cold to drink, try freezing a bottle of water and place it beside your bed. This will provide you the much needed cool down without leaving the comfort of your bed.

Cool Down in the Pool:

As the temperatures start increasing, spending time in a pool when possible can give you the cooldown needed. Not only will a pool help you cool down but provide you with some exercises that can be done easily and without high impact on your body that might cause you extra pain. For additional cooling powers, keeping your wet swimsuit on after leaving the pool can be wonderful because it will also keep you nice and cool!

Plug in a fan or fans:

The fan you use does not need to be high-tech or fancy to offer you cooling benefits. A simple oscillating fan that is easy to move to other rooms can provide you great and fast relief from the evil heat. A ceiling fan helps to circulate air, which can give useful relief from the heat as well.

Lighten Up Clothing:

It can be astounding how our choices of clothing can make a considerable difference. Thinking in layers of clothing when we get dressed might serve you as a benefit. Dressing in lightweight and easy to remove clothes allows you to remove layers, as necessary.

I hope the information provided in this post was helpful for you. In the southern state that I live in, I can speak from experience on how awful the heat makes me feel. It typically starts getting a little too hot for me in April and previously when I did leave the house, I would be overheated just walking to my car. A few years ago, I did reach out to the National Multiple Sclerosis Society and they sent me a few cooling products that are phenomenal, and I am thankful to have them. Of course, over the past year, I hardly leave the house, but hopefully, things will become safe again soon.

Thank you for visiting my site today. I know I have been a little off with my typical posts, but life and fatigue sometimes get in the way. I would love the opportunity to read what you thought about this information and will do my best to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

9 Multiple Sclerosis Facts

In previous posts, I have explained that Multiple Sclerosis is an autoimmune and neurologist illness. What this means is MS affects the nerves, but also the body’s defenses to fight disease fails and begins to attack the cells. The immune system attacks the body’s myelin when you have MS. Myelin is a protective substance covering the nerves, so when this happens it leaves the nerves unprotected. The nerves being unprotected makes them vulnerable to damage, which causes them to not function as they would if there was healthy myelin. The damaged nerves create a wide range of symptoms that vary in seriousness.

A few additional facts regarding MS to understand are:

1.Multiple Sclerosis is a chronic condition, which means it is a lifelong condition and it does not currently have a cure. It is important to understand that even though there is not a cure, it is not fatal. There are 2.3 million people worldwide living with MS and they all have the standard life expectancy. It is only in rare cases there might be complications severe enough to shorten the life of a person. Overall, with MS most symptoms can be regulated with medication, adjustment to lifestyle, or both.

2. Multiple Sclerosis affects younger adults, and often women. Although MS can be diagnosed in children and older adults, people are mainly diagnosed between the ages of 20 and 50. Women are two to three times more likely to develop MS than men. If the person is diagnosed is over the age of 50, this is normally called late-onset MS. It can be challenging for older adults to find a diagnosis of MS due to other age-related conditions having similar symptoms.

3. Multiple Sclerosis can be arduous to diagnose. Often symptoms and single tests are not enough to be able to make an accurate MS diagnosis. The challenges are due to the symptoms mirroring the symptoms of other conditions. Numerous tests that can be used to rule out other potential causes of the symptoms a person is experiencing, which include:

A. Blood tests to rule out Lyme disease, which can trigger the same symptoms of MS.

B Neurologist Exam

C. Magnetic resonance imaging (MRI)

D. Visual evoked potential (VEP) test, which looks for impaired transmission present along the optic nerve pathways.

E. Cerebral Spinal Fluid (CSF) Analysis is a way to look for conditions affecting the brain and spine. The CSF analysis is a series of laboratory tests performed on a sample of the CSF, which is a clear fluid that cushions and delivers nutrients to the CNS.

F. Optical coherence tomography (OCT)

4. The symptoms involved with Multiple Sclerosis vary and the list is long. The truth is, there is no such thing as typical symptoms because everyone that lives with this illness experiences it differently. Some symptoms may simply come and go, or some may regain a lost function, such as bladder control. A few possible symptoms include numbness and tingling, vision problems, balance and mobility issues, and slurred speech. The unforeseeable pattern of symptoms is due to whatever nerves are being attacked by the immune system at any given time. Most things are just unpredictable, and we must deal with the issues as they come up.

5. Multiple Sclerosis is comprised of relapses and remissions. Remission is the period of time when the symptoms have improved. Remission does not indicate the MS is gone, but these periods may last days, weeks, months, or in some cases years. Relapse or exacerbation is the incidence of a new symptom or worsening of an old symptom. This occurrence can be mild or severe enough to interfere with the ability to function. No two exacerbations are the same, so it is important to consult with your neurologist when you deal with one.

6. There is a cognitive part to Multiple Sclerosis. All the damage MS causes to the nerves can also impact critical thinking and other cognitive (mental) skills. It is not unheard of or abnormal for people with MS to have issues with memory and or finding the right words to convey what they are thinking. A few other cognitive effects may include:

*An inability to concentrate or pay attention

*Decreased problem-solving skills

*Difficulty with spatial relations, which means the ability to perceive two or more objects positioned in space relative to oneself and in relation to each other.

*It is normal for cognitive problems to create frustration, depression, and/or anger, but these are issues your doctor can help monitor and manage.

7. Multiple Sclerosis has been labeled as an “invisible illness” or “silent disease”, which makes sense because at face value people with MS look no different than those without MS. Symptoms such as blurred vision, sensory problems, and chronic pain cannot be seen by anyone else. However, some people that do require special accommodations, even though they do not have mobility issues and appear to be fine. One reason why MS has been labeled a “silent disease” is that even during remission, the disease is still, unfortunately, progressing, which has been referred to as “silent progression” of MS.

8. Staying cool whenever possible is greatly beneficial. Heat intolerance is another common issue that can cause an exacerbation of symptoms. People with MS may experience an increase of symptoms from hot weather or sun exposure, fever or illness, hot baths, or showers, and overheating from exercise.

It might be helpful to use fans and air conditioning, cool drinks, and/or icy compresses to stay cool. Wearing layers of lightweight clothing that is easy to remove may serve as a benefit as well. Also, utilizing a cooling vest that can be purchased online. Although people might experience a heat-related relapse, it is important to understand that heat does not cause MS to progress any faster.

9. Vitamin D plays a vital role in Multiple Sclerosis. Research has indicated a link between Vitamin D and MS, which showed the nutrient can function as a protector against MS and possibly lead to fewer relapses. Sunlight triggers the production of Vitamin D in the body, but that sun exposure can also lead to heat-induced symptoms. There are plenty of ways to increase Vitamin D without sun exposure which include fortified milk, orange juice, cod liver oil, salmon, tuna, and eggs or there are also Vitamin D supplements available.

I hope you found this information useful for yourself or someone you know. Please just keep in mind that I am not a doctor or medical professional, I am just someone that has lived with MS for over 20 years. I have experienced most of what is in this post, but that one thing I did not do when I was diagnosed was have the CSF Analysis. I have heard it is not pleasant, but people do live through it. There are still a few days left in the month of March and I do plan on doing a few more posts for Multiple Sclerosis Awareness. I do feel like there is a lot of information available and it needs to be shared with as many people as possible!

Thank you for visiting my site today. I always appreciate your continued support and truly love reading your comments. I hope you are having a good week and you are staying safe because COVID is still a threat. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Been on my mind

~Living Life With An Unpredictable Illness~

I have decided to write about a few things that have been weighing on my mind lately. Lately, I have been feeling overwhelmed with life, work, and health concerns. There always seems to be something going on in the world from the political insanity to COVID-19 to mass levels of hatred that is being spread even fast than the virus.

I think after everyone that wanted to vote did so and the counting was finished, there should not be any more talk about it. The voices of SO many American people spoke out and there is going to be a new president starting in January 2021! There is a chance we may have hope now because we are not going to have an immature person that is unable to take accountability for what has happened with this pandemic and is definitely not a leader in the White House.

As for COVID-19, if people would just follow the advice we have all been told for months now, MAYBE there would be more control over the virus by now. Unfortunately, the few times I actually leave my house hardly anyone is wearing a mask. I just do not understand why because I know they must have seen the news and see the numbers on the consistent rise. The virus is NOT a joke. This virus is killing thousands of people every day and it needs to stop.

The hatred that is being spread will never make sense to me. I have said this to y’all multiple times, but I have to say it again, everyone should be treated equally and with respect. A person’s race, color, sex, national origin, sexual orientation, religious following, and anything else should not matter because we ALL have a beating heart and feelings. No one should ever feel shame for who they are, but instead should be proud. The rage and hate that is filling the United States must end because the death, injuries, and fear are things that never should happen.

I will end my little rant now, but I do want to share with y’all a little about what my life has been like living with an unpredictable illness, especially during the pandemic. Most of you, if not all of you are already aware that this is definitely not easy. Of course, there are good days along the way, but then there are also those days that are more grueling than any others. The truth is there are some days it is challenging for me to even get down the stairs to the home office and begin my workday because my legs hurt terribly and they are extremely weak, but I do manage to get there.

Besides the continuous pain I have from my knees down to my toes, I have massive amounts of pain issues from the middle to the lower area of my back. Considering I have been living with Multiple Sclerosis for two decades, I have learned to live with the pain. I guess it is safe to say that I have learned to not just live with the pain, but also accept it as part of my life. I mean there really isn’t another way because I am not going to allow for Multiple Sclerosis to dictate my life as I want to control my own life. Unfortunately, there is not a cure for Multiple Sclerosis yet and I want to live my life to the fullest I possibly can. After all, I did make my late Poppy a promise 20 years ago that I would NEVER give up and I refuse to disappoint him by not keeping that promise!

Another difficult symptom I have been dealing with more lately is dizziness. Previously, the dizzy spells were random and only a few times a year, but recently they have been awful. Last week, I had two dizzy spells within a few days of each other. The second one happened after my husband and I finished dinner, and I told him before I tried to start cleaning that I didn’t feel right. When I tried standing up and I told my husband I was very dizzy, so he started cleaning up for me. I still attempted to try helping and when I thought I had control of the dizziness, I fell in the kitchen. Of course, my husband came running to my side to make sure I was not hurt. The only injuries were a few bruises to my knees and thankfully did not hit my head. Even after sitting on the floor with my husband for a few minutes, I still didn’t feel like I could stand without falling, so my sweet and caring husband carried me into our room.

I want to thank y’all for visiting my site today and reading this post. Even though I know some of you can relate to this, I wish you didn’t have to because I know it isn’t all that fun. On my worst days something that helps me get through them is I can hear my Poppy’s voice saying “No matter what you are going through in life, someone else is always going through something worse. “ He always told me he believed in me and that I was strong enough to get through anything thrown at me and I know he was right!

I would love to read your comments and promise to respond as quickly as I can. I know sometimes it takes me longer to respond, but that is because I have been working no less than 45 hours a week and sometimes more. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa