Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
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!
I have written about Multiple Sclerosis many times before and I have talked about it a lot as well, but neither of these can explain what it is like to live with it. Many people have heard Multiple Sclerosis referred to as the “invisible disease” and I supposed for the most part it is invisible. Of course, some people stumble because they struggle their balance, or they may have challenges to walk and are bound to a wheelchair or use a walker. These challenges are obviously visible because the person cannot and should not feel compelled to hide them. However, some try to out of fear of being judged. There was a time that I felt I needed to hide my illness because I know people talk and it is always about things, they know nothing about, but that is not my fault, and it is on them.
Out of all the issues Multiple Sclerosis puts on a person, many that are truly invisible issues to deal with. No one can feel the pain someone feels, which those with Multiple Sclerosis tend to face daily. I have mentioned before that I live in pain every minute of every day but try my best to hide it and not because I am afraid of what people may think. I hide the pain because nothing helps my pain ease. It does not matter if I explain how I feel or even cry about it, the pain will still be there. I am thankful that the pain I feel cannot be felt by those around me because I would not wish that on anyone, and it is not fair for anyone to experience it.
Another issue I deal with that is invisible is the neuropathy. The feeling of spiders crawling around on my legs and feet is only something I endure, and no one can see it. This is something that I feel daily and mostly it increases at night, but still there are times during the day I get experience this. Of course, my husband that is with me all the time can see it because I start getting fidgety and cannot stay still. Not that it helps but I will start rubbing my legs when we are watching TV or having lunch together. I cannot explain why I rub my legs or feet, but I supposed I am trying to make the feeling go away. My husband has even asked me if it helps or why I do it and I cannot explain it to him, I guess it is just a habit.
Stress causing my condition to deteriorate is not something anyone can see. Heck, I cannot even see it immediately, but will understand later what stress does to me. Stress can cause symptoms to worsen and potentially cause a relapse. Anyone that has Multiple Sclerosis or knows someone with it understands how bad a relapse can be and it is something that we all try to avoid. A relapse can be awful, but the actions taken to decrease the length of time one deals with them are typically by using steroids. For anyone that has been on a high dose of IV steroids, you know how terrible that can make you feel. I can admit that the steroids will make the relapse not last as long, I would prefer to not take them.
The only person that knows how exhausted I always feel is me. It is not something anyone can see, but I do see and feel it. I cannot even explain it to anyone because it does not matter how much sleep I get. I will wake up feeling like I have not slept at all and truthfully, I probably did not sleep well through the night. The pain and tingling will wake me or prevent me from falling asleep, but I still try pushing through the day like I have slept eight hours.
COVID introduced a new invisible issue to Multiple Sclerosis. Everyone had to deal with the normal things that came with COVID, but anyone that is on a medication that weakened their immune system had to be even more careful. Even after there were vaccines available, we had to determine how safe they were mixed with their medication. Being under isolation could make people feel even more isolated and nervous for what could happen if they got COVID. I know I was afraid that if I got COVID and being on Gilenya if I would survive. Anytime I left the house, I would wear a mask and be looked at like I was insane, but I do this because I refuse to gamble with my life.
I think COVID has made everyone feel like they are living under house arrest. My mother moved to Texas a few years ago and we did not see each other before she moved because of the fears of COVID. It is not that I do not want to see my mother, but I refuse to get on an airplane until COVID is gone and there are no new variants. I also do not want her getting on an airplane to come to where I live because I do not want her getting COVID or bringing it into my house. It is not easy dealing with this because she is my mother and I know she would get on a plane tomorrow, but it is not safe for either of us.
Considering March is Multiple Sclerosis Awareness Month, I thought it would be good to do a post about the invisible side of it. I understand why people would call it the invisible disease because much of it is invisible. Truthfully, I would prefer the balance issues I deal with to be invisible because I feared when I was diagnosed about being in a wheelchair and not that it is a bad thing. After all, it can happen. Although the pain is invisible, anyone that knows me can see how much I hurt.
Thank you for visiting my site today and reading what I have written. I hope this provides some clarification to the issues I deal with that are truly invisible and why I hide some of them. I am not hiding things because I am ashamed, but because it does not help. I do look forward to reading your comments because I know they will be insightful. I will 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!
Multiple Sclerosis can be a challenging illness to live with, but there are often ways to manage the difficulties. Many things can trigger symptoms, but there are also ways to avoid many of these triggers. It takes time to understand what exactly triggers your symptoms and then to discover the best way to avoid them. Just like each person experiences MS differently, each person will have different triggers and ways to combat those triggers. Of course, please remember that I am not a doctor or medical professional, I am just another person living with MS, and have researched the topic. Today, I am going to share 10 triggers and ways to avoid these triggers.
1. Stress: We all experience stress in our life but having a chronic condition like Multiple Sclerosis can create an entirely new source of stress. Other types of stress can be a result of work, personal relationships, or financial struggles. Too much stress for anyone can cause difficult times, but too much stress for someone with MS can contribute to the worsening of symptoms.
Ways to avoid stress might include finding a relaxing, stress-reducing activity that takes your mind off stress. This activity is anything you find enjoyable because this is for YOU and YOUR health. A few things that may appeal to you are yoga, meditation, and breathing exercises. These practices can help you to relax and obliterate risks for causing symptoms to worsen.
2. Heat: Any form of heat whether it be from the sun, sauna or, a hot tub can be too extreme for people with Multiple Sclerosis. This can often time lead to an exacerbation of symptoms. From my own experience, heat is the enemy which is difficult because I love the beach. I think my saving grace at the beach is the ocean breeze!
It is not always easy to avoid the heat, especially where I live in the south. The best way to avoid this is to keep your house cool and purchase extra fans. Also, on days when there is extreme heat avoid direct sunlight, wear light loose clothing, and stay in the shade as much as possible. Steer clear of saunas, hot tubs, and those hot yoga studios.
3. Childbirth: Many women with MS experience a relapse after giving birth. As a matter of fact, 20-40% of women endure a relapse in the period of time after giving birth. Thankfully, my husband and I do not have children, so I have not experienced this issue. Of course, no one can prevent a relapse after childbirth, but this would be a time to take some steps to reduce how severe the impact is. During the immediate days after childbirth, lean on family and friends to assist with your new bundle of joy so you may get rest and take care of yourself. This can help your body recover more effectively.
4. Becoming Sick: Certain types of infection can cause a relapse and MS can create certain types of other infections. Infection such as the flu or even something as simple as the common cold may cause MS symptoms to worsen.
Avoiding sickness can be challenging, especially with COVID spreading like wildfire. Even with the numerous challenges involved with avoiding getting sick, living a healthy lifestyle can help with preventing infections and other illnesses. It is also helpful to wash your hands for at least 20 seconds multiple times a day and distance yourself from anyone that is sick, especially if you are experiencing a relapse.
5. Some Vaccines: While most vaccines are safe and recommended for those with Multiple Sclerosis, certain vaccines contain live pathogens, which can create the risk of exacerbating symptoms. If you are experiencing a relapse or taking certain medications, consult with your neurologist before getting any vaccines because it might be in your best interest to postpone the vaccine. Your doctor will know the best way to handle this and will advise you regarding vaccines.
I will be completely honest with y’all with the medication I take for MS, Gilenya, I was advised years ago to not get vaccines. Of course, that was 20 years ago and so many changes with medications with additional research. I had always been leery of getting anything and it was not due to the needles, I just feared for negative interactions. However, my current neurologist told me things with the Gilenya had changed over the years and the only vaccines that were not safe were the ones that were live vaccines, and I was able to get the COVID vaccine and I can get the flu vaccine if I decide I want it. My neurologist did highly recommend I get the flu vaccine, but I am not in any rush to do this!
6. Vitamin D Deficiency: At least one study discovered that people with lower vitamin D levels have an increased risk of relapse than someone with adequate vitamin D levels. It has been suggested that Vitamin D can protect against developing MS, but even more research that revealed Vitamin D affects the disease as it is needed.
The best way to prevent the issue of Vitamin D deficiency is to make sure your doctor regularly checking your Vitamin D levels. There are supplements available, some foods have high amounts of Vitamin D, and safe sun exposure can help increase and maintain your levels. However, while supplements may seem safe and legit, it is best to discuss any supplements with your doctor before beginning them to ensure there are not any negative interactions and they will provide suitable results.
7. Inadequate Amount of Sleep: Sleep has an important role in our overall health. The body utilizes sleep to repair the brain and restore other areas that have been damaged. When we do not get sufficient sleep, our body does not get the necessary time to rest and rejuvenate. Too much fatigue can trigger symptoms and/or make symptoms worsen. With muscle spasms, pain, and tingling, MS can make sleep rather troublesome.
Considering how vital sleep is for our health, it is crucial to discuss sleep issues with your doctor. Bring the issue to your doctor’s attention can help determine if any other conditions causing the sleep struggles.
8. Poor Diet: A well-balanced and healthy diet, along with regular exercise can be beneficial for avoiding relapses and/or reduces Multiple Sclerosis symptoms. A diet considering of processed foods will not supply your body with the nutrition that is required.
To avoid developing a poor diet habit, working with a dietitian to discover the best healthy eating plan you can carry on with could be extremely helpful. Although, research is not clear as to the best diet is for people with MS, eating healthy foods can have a positive impact on everyone’s health. Concentrate on good sources of protein, healthy fats, and carbohydrates is one of the best ideas.
9. Certain Medications & Stopping Medications Too Soon: The truth is some medications that can make symptoms worse. Your neurologist will need to monitor all medications you are taking to ensure there are no interactions that can trigger symptoms to worsen. Even though some medications can have negative side effects, this does not mean you should stop any abruptly. You should always consult with your neurologist before starting or stopping all medications as to not increase your risk of a relapse.
The 10th Trigger Can Be Pushing Yourself Too Far & Too Hard: As already stated, fatigue is a common symptom for those living with Multiple Sclerosis. With that said, if you have MS and continuously push yourself to go with too little sleep and/or overwork yourself physically and/or emotionally, you might face ramifications. The combination of overexertion and fatigue can trigger a relapse or make a relapse last longer.
The best way to avoid a relapse due to pushing yourself too hard is, be easier on yourself or at least listen to the cues your body is telling you. Start slowing down when you become tired. Rest as much as possible when you can. Understand that pushing yourself to exhaustion, the recovery will take that much longer. It is important to know that our body does know when it has had enough and when it needs to rest and take a break!
I hope the information provided in this post will be beneficial whether you have MS or another chronic condition. Living with any chronic condition can be complex and I am only way too familiar with Multiple Sclerosis, and with March being Multiple Sclerosis Awareness Month, I wanted to be able to share as much useful information as I could.
Thank you for visiting my site today! I hope you have a nice and safe weekend! I am looking forward to reading your comments and I promise to respond as quickly as I possibly can! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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!
~Terms to know when living with Multiple Sclerosis~
Whether you are newly diagnosed with Multiple Sclerosis or you have been living with MS for many years, you already know it is hard enough living with MS. Then adding learning and remembering an entirely new vocabulary makes things even more challenging, and confusing. I know there are times I still get a little flustered when talking to my neurologist or try explaining to someone the way I am feeling. I am going to share some useful terms to try to help make things somewhat easier to understand. Please keep in mind that I am not a doctor or medical professional, just a person that has lived with MS for more than twenty years.
Fatigue is one term we are probably all too aware of. This is one of the most common and important symptoms relating to MS. It has been suggested by the National Multiple Sclerosis Society, that this affects about 80% of all people living with MS.
Vision problems tend to be the first sign of MS for many people. This was the way the doctors discovered that I had MS. I think I have told y’all before, I had gone to the eye doctor thinking I was going blind in one eye, but the doctor said as gently as he could that he thought I had MS. I was terrified and only 19 years old, so I was still a child with a naïve mind. Inflammation of the optic nerves is knowns as optic neuritis. This can cause several problems, such as blurred vision, eye pain, and/or blind spots.
Brain fog is not a medical condition, but a term that is used to explain certain symptoms affecting the ability to think. Brain fog can make thoughts seem cloudy and you are not able to think clearly. This might cause you to feel confused, disorganized, and/or find it difficult to focus or put thoughts into words. This is also sometimes referred to as MS brain, cog fog, or cotton brain.
Slurred speech is often due to the loss of coordination of the tongue, lip, cheek, and mouth muscles. This loss of coordination may also result in trouble swallowing.
Loopy, which can be best described as feeling tired and/or almost like you are drunk.
Jelly leg, which may be referred to as jell0o legs or noodle legs. When experiencing jelly legs, you are legs will not work correctly.
Hallway pinball is when your walk is weaving from side to side. With MS, your legs may sometimes feel wobbling, weak, and tired. You might lose some control of your legs and when walking down a hallway, forcing you to bounce back and forth from side to side like something you would see on a pinball machine, hence the name.
Wooden leg or legs is a phrase that is used to describe the stiffness in the legs.
Foot drop is a term used to explain weak muscles that make it difficult to lift the front part of your foot or feet as you walk.
One major symptom of MS is chronic or acute pain. Shooting pains are typically acute, which means they come on suddenly, intensely, and then disappear. Pain is something I have battled with for the past 20 years and it does not get easier with each year that passes. However, I will not allow the pain that my life is plagued with bring me down and will always try to continue pushing through it, no matter how awful it gets. Truthfully, the pain does get worse when it rains or I am stressed. Lhermitte’s sign is a type of shooting pain. This is a sudden sensation that mirrors an electric shock passing down the back and into the spine and might radiate out into your arms and legs. This is usually triggered by bending your head forward towards your chest.
MS hug is a type of hug I never want. This term describes a constricting pressure surrounding the chest or waist area. It feels like there is a snake around you and just continues to squeeze or at least that is how it feels to me. The pain involved with the MS hug can range anywhere from mildly annoying to extremely annoying and tends to come along with a burning sensation. An MS hug is caused by spasms of the muscles between the ribs.
Spasticity, also referred to as spazzy. This is a common symptom of MS and can occur in any area of the body, but most commonly is in the legs. With this, the muscles might feel simply tight or can be extremely painful. There are two types of spasticity:
1. Flexor affects the back of the leg and upper thigh.
2. Extensor which affects the front of the upper thigh and inside of the upper leg.
Twitchy means you are experiencing twitching from spasticity.
Considering MS affects the central nervous system, the pins and needles sensation is common and most often felt in the limbs. This has been something I have dealt with for years and it is not easy to deal with. Even though I am on a high amount of Gabapentin, I do still feel this every day of my life.
Thank you for visiting my site today. I hope you found this information helpful or at least made things a little clearer. Believe me when I say, I understand how hard it is to remember every term used in the medical field and I have learned more by sharing this information with y’all. I think we can all continue to learn more, and we can help one another with this learning curve. I would love to read your comments on this post, 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!
As you read this post, please be advised that I am not a medical professional. The information in this post is based on the research I have done since being diagnosed with this disease 20 years ago. The one thing about this disease that is important to understand is, it is extremely unpredictable and everyone, no matter what type of MS they have experiences it different. It does not matter if two people have the same type of MS, everyone experiences and deals with it differently.
Multiple Sclerosis (MS) is an autoimmune disease that means that the body’s immune system attacks its tissues. This is a very unpredictable disease, and everyone experiences it differently. In this post, I am going to explain the four different types of MS and the distinctive characteristics of each type.
Radiologically Isolated Syndrome (RIS), is not considered part of the MS path, but has been utilized to categorize those with abnormalities on the brain and/or spinal cord that are consistent with a lesion of MS, and do not have any current or previous neurological symptoms or abnormalities discovered on a neurological exam. Many individuals had an MRI due to symptoms, such as headache, and revealed lesions appearing similar to those found in MS. During a study in 2020, it was uncovered that more than half of individuals with RIS will develop MS within 10 years.
Clinically Isolated Syndrome (CIS) is a path of MS. CIS is referred to as the first occurrence of neurologic symptoms, which last at least 24 hours. This occurrence is caused by inflammation OR demyelination in the Central Nervous System (CNS). CIS can be classified as monofocal OR multifocal. Monofocal is when a person experiences a single neurologic sign or symptom that is caused by a single lesion. An example of this is an optic neuritis attack. Multifocal occurs when a person endures more than one sign or symptom caused by lesions in more than one area. An example of this is an optic neuritis attack and tingling in the feet. An important thing to be aware of is, just because an individual experiences CIS, it does not mean they will develop MS. The healthcare provider faces two challenges with diagnosing CIS:
1. Determining if the person is experiencing a neurologic episode caused by damage to the CNS.
2. Determine the chance from the damage the person is experiencing is a form of demyelination that will develop into MS.
Relapsing-remitting MS (RRMS) is the most common and the type I was diagnosed with 20 years ago. Approximately, 85% of individuals with MS are originally diagnosed with RRMS. This type of MS has evidently defined the attack of new or increasing neurologic symptoms. The attacks are also referred to as relapse or exacerbations and are followed by periods of partial or complete recovery, which is also known as remissions. While there is not any obvious progression of the disease during a remission, symptoms may disappear or some of the symptoms may continue and become permanent.
RRMS can be further described by inflammatory attacks on myelin, which is the layers insulating membranes surrounding nerve fibers in the central nervous system (CNS) and the nerve fibers. Throughout the inflammatory attacks, activated immune cells cause small, restricted areas of damage that create the symptoms of MS. Considering the areas of the damage varies, no two people will experience the same symptoms at any given time.
Those who have RRMS tend to have more brain lesions and more inflammatory lesions that appear on the MRI scans. Individuals are often diagnosed with RRMS in their 20’s and 30’s but can also occur in both childhood and later adulthood. Women are diagnosed 2-3 times more often than men.
The symptoms of RRMS can and normally are different for each person, but there are some common issues. The most common symptoms for RRMS are fatigue, numbness, vision problems, spasticity or stiffness, bowel and bladder problems, and issues with cognition. It has been suggested that a transition from RRMS to years SPMS typically will take place in people who have lived with RRMS for at least 10, but this does not always happen.
Secondary Progressive MS (SPMS) is another type of MS. This type of MS usually follows a period of the relapsing-remitting disease, the levels of disability gradually increase with or without evidence of disease activity.
SPMS is basically a second phase of the disease. Individuals with this type of MS may or may not ensure relapses caused by inflammation. However, the disease slowly changes from the inflammatory process like seen with RRMS to a consistent phase classified by nerve damage or loss.
Before the availability of disease-modifying therapies, some studies suggested that 50% of those diagnosed with RRMS would shift to SPMS within 10 years, and 90% would change within 25 years. The many different medications that are available in 2021 have provided a positive impact on disease progression. However, experts say it is still too soon to know the extent to which these disease-modifying treatments will change or slow the transition to SPMS.
Considering the transition from RRMS to SPMS is a gradual process, the healthcare provider will not know when exactly it occurs. The challenges the healthcare provider faces is establishing if:
1. The worsening is permanent, but some damage remains after the inflammatory attack ended, meaning the individual is experiencing an RRMS disease course.
2. OR the disease continues to get worse, but the individual is no longer enduring an inflammatory relapse, which would indicate the person has transitioned to an SPMS disease course.
The fourth type of Multiple Sclerosis is Primary Progressive MS (PPMS). This type is classified by worsening neurologic function from the onset of symptoms without early relapses or remissions.
Each person that lives with PPMS will experience this disease differently. Commonly, PPMS may have short intervals when the disease is stable, with or without a relapse or any MRI activity, as well as duration when there is increasing disability occurring with or without new relapses or lesions on an MRI.
PPMS is different from RRMS and SPMS because it does not include the same issues with inflammation. Although people with PPMS have fewer brain lesions than those with RRMS and SPMS, they do tend to have more lesions on their spinal cord. Typically, people with PPMS experience more problems with walking and may require more assistance with everyday activities.
From my own experience with Multiple Sclerosis, I was a terrified child when I was diagnosed. I was only 18 years old and did not know much about the disease. In my naïve childlike mind, I was going from being diagnosed to a wheelchair and then death. Yes, I was diagnosed, but did not end up in a wheelchair yet. I think it is extremely important for anyone newly diagnosed to do research, build a strong and honest relationship with a neurologist, and have a strong support system. It can be a scary and terrifying diagnosis, but a normal life can still be lived, especially one the right disease-modifying treatment is found!
Thank you for visiting my site today. This is my first post about Multiple Sclerosis for MS Awareness Month. There is so much information out there about this disease and I only wish I had this when I was diagnosed all those years ago. I can remember how I felt because I was alone in the exam room when I heard the news and it felt like the room was spinning out of control. I did not want anyone to know I had MS, but that was rather silly. Now days, I am open about it and want to help others that are dealing with this disease. I want y’all to know, no matter how alone you feel, you are never alone! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes! I also want you to feel free reaching out to me any time if you ever need any extra support and help!
An exacerbation of Multiple Sclerosis can also be referred to as an attack, a relapse or an episode. All the terms all mean the same thing which is the occurrence of new symptoms or worsening of an old symptom. These range from mild to severe enough to interfere with a person’s ability to function in daily life. The exacerbation will follow the following criteria:
Previous symptoms become more severe or new symptoms have started to show.
Symptoms last longer than 24 hours, commonly lasting days or weeks.
A total of 30 days has passed since the start of the previous relapse.
Healthcare provider has ruled out all other possible causes for an exacerbation, including infection, heat, and stress.
It is critical to know when this is happening because early treatment can help reduce the impact on the person’s body. It must be known that no two exacerbations are alike and can change slightly.
The reason an exacerbation occurs is due to the immune system attack on the myelin sheath, which then causes slow or interrupted neuronal signals in the brain and spinal cord. An exacerbation can consist of balance problems, coordination, eyesight, bladder function, memory or concentration problems, mobility, fatigue, weakness, numbness or needle-link sensation.
Mild symptoms such as fatigue, numbness, and needle-link sensation could potentially improve on their own and not require treatment. More intense issues could be considered a severe exacerbation which could include vision loss, extreme weakness, and poor balance. During a severe exacerbation, a person’s daily activities could be affected and a short course of high-dose corticosteroids may be recommended by the specialist.
The high-dose of steroids helps reduce the severity and duration of the exacerbation. Even though steroids work well with the exacerbation, they can also have some rather unpleasant side effects including increased appetite, weight gain, fluid retention, high blood pressure, irritability, confusion or delirium, increased risk for infection, and easy bruising.
Symptoms for each person with Multiple Sclerosis are different. Being aware of common triggers for an exacerbation is vital for each person to know and even though symptoms can occur without any notice it is important to try avoiding certain things the best one possibly can.
4 Common Triggers for an Exacerbation:
Stress- Part of living with an illness like MS is emotional stress which can lead to other common MS symptoms such as depression. Stress does have the potential to lead to additional MS symptoms such as fatigue and confusion. It is a crucial part of MS treatment to have a good and solid support network of people that can help out both physically and emotionally.
Fatigue- Sleep is essential for those with Multiple Sclerosis. Small issues like lack of sleep can trigger MS symptoms. It is very important to have good healthy eating habits, sleep well, and getting exercise daily which will help combat MS fatigue.
Infection- Infections cause about one-third of all exacerbation. Urinary tract infections are very common because some people with MS have reduced bladder function. Any infection can weaken the immune system; even the simple ones like a cold or the flu and cause an exacerbation. It is extremely important to avoid being around sick people, but when it is unavoidable be sure to wash hands frequently.
Heat- Infections leading to fever can be something to worry about considering increased body temperature is a very common trigger. MS symptoms, especially tingling gets worse in the summer because of the heat. It is predominant to get into the air conditioning or take a cool shower to reduce heat symptoms from occurring.
Thank y’all for visiting my site and reading about what an exacerbation is. Speaking from personal experience an exacerbation can be awful and also frustrating. Even though I do know that steroids help the episode duration be shorter, they cause my mood to change so much that I have a hard time with them. They cause my temper to come out much faster than it normally would and also cause me to feel edgy and unable to sleep.
For any of you that have experienced an exacerbation and were put on steroids, how did the steroids make you feel and did they help the episode not last too long? Also, if you have anything you would like to add to this, please let me know. I always want to spread the awareness as much as I can because I think it is important. Even in 2020 I do still think there are a lot of misconceptions about MS and people are very quick to judge, which can cause feelings to be hurt. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!
Good morning Y’all! I hope you are having a great weekend so far and you will be able to enjoy your Sunday! After all the topics I have been able to address, I managed to forget one of the most important topics. While reading several different blogging forums, I thought it would be a good idea to address the thing that brought me to blogging in the first place, my Multiple Sclerosis. So today I am going to share with you the letter I would love to send to this illness. This might be a little longer and full of emotions, but it is also very real! I hope you enjoy this! Maybe this could be something for you to try, write a letter to your illness!
Dear my not so loving friend Multiple Sclerosis,
You invaded my body about 18 years ago and just stuck with me without fail. We have been through many relapses together over the years; all the while you tried to defeat me. But let’s face it, I will not surrender to your persistent bad behaviors and will not allow you to keep me down for too long.
In the beginning of our “so-called friendship”, you tried to take my vision from me, which let me just say was not a good way to become the lifelong friends we were forced to be!! Of course it took a little help from the not so exciting steroids, but my vision thankfully returned to normal! You have tried over and over again throughout the years to take control of my legs by causing me so much pain and numbness, but I am still able to walk without the assistance of what I think you were aiming for. You have caused me so much pain and suffering for way too many years, but I still continue to fight back with all my might because I never plan to give up and allow you to control my life! The truth is, you are the one losing our constant battle and I am shockingly enough the one winning the war!
Let us not forget the fact that you have chosen to take up to residence in my brain causing many other issues for me! There are the several times a week debiting headaches which normally end to severe nausea. The headaches you decided to inflict me with make it nearly impossible to do anything at all! It was also decided by YOU to cause some brain fog and dizziness, making me feel confused and frustrated. The horrible back, neck and leg pain is more than enough for me to live with, don’t you think? Please get out of my brain because you are being EVICTED IMMEDIATELY!
I bet you thought you were being clever by giving me hugs every now and then! Well I do not like or appreciate your unwelcome hugs! So in the future, please do not do that! Just in case you did not already know, your hugs are very painful!
I guess during the 18 years we have spent together, you have become the friend that I never asked for or wanted and you just will not go way to give me a break. You are pretty much worse than the most obnoxious uninvited guest that will NOT LEAVE no matter how many hints you are given! The only thing I can do now is just embrace the fact that you are just here for the long haul and will surface whenever you please without so much as a warning which let’s face it is really inconsiderate!
Oh and what about all those different medications you want me to take? Do you not realize just how much some of these medications can and do affect a person’s body or do you just not care? Why must you be so complicated that the smartest minds of the world can’t seem to find a way to make you vanish? They sure can create so many drugs to “slow” the progression of the illness down but not make the illness stay in a remission state FOREVER! I am starting to think that you, the malicious drug companies and the not so compassionate greedy insurance companies are working closely together to do nothing more but make LOTS OF MONEY yourselves!
So my dear not so sweet friend MS, now that you have heard a little from me about how you make me feel, when are you going to move out of my body allowing me to be free of you? I think it is long since time to depart from each other!
Thank y’all for visiting my site today! I really hope you enjoyed reading the letter I would love to be able to send off to Multiple Sclerosis. Of course I would love to read your thoughts on this, so please let a comment for me and I will respond as quickly as I can. I really hope you are feeling well today and can enjoy your Sunday! As always remember that I am sending you LOTS of love and comfort!
I hope y’all have a lovely Monday! First day of a new week may bring some wonderful and positive changes to all of our lives! I really appreciate y’all visiting my site today and as always love to read your comments, which I do respond to as quickly as I can! Most of the time I like to write about the random things that are on my mind. This helps me to release all those emotions and then getting your feedback help tremendously, so thank you for all of your fantastic comments!
How do you fight for your health instead of fight against it? It is so important to be vocal with your doctor and never allow them to dismiss what you say or rush you out of the exam room. We all know our bodies and how we are feeling better than anyone, so that should be listened to. I think at times it is hard to admit what our body is telling us and our body feels as though it has to scream it at us, which may cause additional issues. I am one that will ignore issues that arise for as long as possible because I do not want to admit to the problems. Ignoring or neglecting our health will never result in anything beneficial. This is where fighting for our health becomes extremely important. If we ignore what our body is telling us we are actually fighting against our own health.
I am actually going to my MS Specialist on Thursday. I am going to my specialist partially because I am supposed to see her every 6 months and partially because I want to share with her my concerns. I already know going in that my issues with headaches will be dismissed because she seems to think that MS and headaches have no correlation, but I think it is still important to bring the topic up once again. I also want to discuss with her the fact that the issues that came with my relapse in October have not really gone away. I am fully aware that the body heals from each relapse differently, but I should have improved drastically by now and not continue to have pain that affects my ability to work full-time. I just really need answers to why I seem to be at a stand still in health. Do y’all have any suggestions to how to grab this doctor’s attention?
I hope y’all have a great and relaxing evening! As always I am sending y’all lots of love and comfort! Try to hold onto your positive thoughts because they will help in the long run and negative thoughts will only hold you back.
Do you ever try to hide behind a mask of what you think you should be? Or hide behind the mask of what other’s think you should be? Sometimes admitting how you truly feel can be terrifying and almost make you feel weak. Periodically I think most of us try to be strong and act like everything is fine when it really isn’t. Always trying to be strong by not allowing anyone to see your pain and struggles becomes a normal way of life, but is that really the best way to live life?
Do you ever feel that you need to disguise your feelings? I can fully admit that I try to not allow my feelings to come to surface when I think they will cause others additional stress. If I am being honest, I do worry about my Multiple Sclerosis and if things are progressing too fast, but it is not good to over think situations you have absolutely no control over. Holding on tight to positive thoughts can be very difficult, but can really change your life, whereas allowing negative thoughts in your mind can be pretty destructive. If I allow my mind to think that my MS is progressing it makes it a real thought opening doors that I prefer not walk through. Building a barrier between our thoughts and reality is sometimes possible if we try!
Stress is a silent killer that can impact all of our lives. So how in the world do you avoid it? Some stress is actually avoidable, but then some stress is completely impossible to avoid because it will come at you with full force. The ways we handle stress are really important! I have tried doing some research about how to avoid stress and found some tips that might be helpful. Avoid caffeine, alcohol and nicotine. So many turn to alcohol when they become overwhelmed, but it is very well know that alcohol is a depressant so that will never be helpful in any way and could cause even more problems. Indulging in physical activity can be helpful for our health as well. Stressful situations increase the levels of stress hormones such as cortisol and adrenaline in the body. So we might be able to take some of the adrenaline from stress and turn it into something positive. Lack of sleep is a significant cause of stress. Stress can interrupt our sleep because our minds are in a constant whirlwind of thoughts which stops us from relaxing enough to even fall asleep. If we are having a hard time falling asleep there are things to try like taking a warm bath or reading a book because these will calm the mind! Starting a stress diary where you can write out your feelings and keep track of your thoughts can be very helpful! Writing out your feelings can help you find ways to solve your problems and not have to worry about judgement from others; your journal will not talk back! These were just a few ideas that stuck out to me, but I know there are so many other ways to handle stress!
I have been very worried about health care in the United States. There have been so many changes that are not really for the positive. I think doctor’s schedules are so full it makes it hard for them to give each patient the attention they deserve and they may even confuse patients. With the doctor’s schedules being so incredibly full, I think sometimes their notes can be misleading and incorrect. I actually know this to be true because I recently had my doctor’s office give me a copy of the notes for the last few years. I have also been very concerned about my MS because things have not gotten much better since the relapse I had in October. I do not know if this means the MS has progressed or if the additional non-stop pain is just here for the long haul. All illnesses are like uninvited guests that just will not leave and make messes during their stay.
I know the weather has been a little crazy all over the world, but I hope y’all had a great weekend! The snowstorms that have occurred at the end of March have been pretty unusual, but I hope if y’all have experienced this you were able to stay warm. I am hoping that this upcoming week will bring us all some pretty spring temperatures. Y’all have already read before that I am never fully ready for the new week to start because I would prefer to have another day of rest. Hopefully this new week will give us some real joy and comfort! I really appreciate y’all visiting my site today and I do look forward to all of your comments! I hope the remaining part of your weekend is absolutely fantastic and restful! I am always sending y’all much love and comfort!!