Just another day in paradise

Posted on July 2, 2022 by Positively Alyssa

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

Invisible Illness

Posted on March 18, 2022 by Positively Alyssa

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!

Always, Alyssa

Multiple Sclerosis Triggers and Ways To Avoid Them

Posted on March 27, 2021 by Positively Alyssa

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!

Always, Alyssa

9 Multiple Sclerosis Facts

Posted on March 24, 2021 by Positively Alyssa

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

Brain Health with Multiple Sclerosis

Posted on March 11, 2021 by Positively Alyssa

~Ways To Keep Your Brain Healthy~

Living with Multiple Sclerosis over the past twenty years has taught me a lot about strength, determination, and the power of the mind. Of course, I am always wanting to learn more about different ways to beat this unpredictable illness and I would like to share with y’all something that I learned with research. I have said this in previous posts, but feel it is important to say again, I am not a doctor or a medical professional and what I write about when discussing anything related to the medical field is based on my research.

It is common knowledge that Multiple Sclerosis is a neurological condition that affects the brain and nervous system. With that said, I am going to explain 5 approaches that can help protect our brain health.

1. See a neurologist:

A neurologist is a doctor that specializes in the nervous system, which includes the brain. There are several ways a neurologist can be helpful that include, but not limited to:

A . Monitor any progression of the condition we are dealing with.

B. Evaluate the treatment plan to ensure it is providing the best prevention of progression and or disability.

C. When necessary, recommend changes to the current treatment plan

D. Disclose information regarding any new and/or experimental treatment options.

I think it is crucial to have a neurologist you trust and are comfortable with because they are the ones helping prevent the progression of the specific disease. This type of specialist tends to have a personality of a gnat, but there is one out there for all of us. Over my 20 year stretch with Multiple Sclerosis, I have seen around 5 or 6 and at least 3 of them did not work because I did not trust their abilities, nor did I feel comfortable with them. You must feel comfortable and trust the specialist you see because your health is basically in their hands.

2. Discover the disease-modifying treatment (DMT) that works best for you:

Disease-modifying treatments are a class of medications that were designed to slow the progression of MS. These medications can help in several ways which include, but not limited to:

A. Ward off the growth of lesions on the brain and/or spinal cord

B. Decrease the frequency and seriousness of relapses.

C. Diminish the risk of disability.

The specialist you see should be able to explain the various types of DMT’s, which include explaining the potential benefits and risks of each. During my MS journey, I have tried several and found some that worked well for other people but did not work for me. I think it can be one of those trial-and-error situations. I learned quickly that I cannot do shots and it has nothing to do with the needle, as I do not have a fear of needles, but everything to do with the side effects I could not handle.

3. Be involved with Cognitive Rehabilitation:

Cognitive rehabilitation entails utilizing memory or learning exercises to improve cognitive functioning. These exercises have the potential to help many things which include the following: Memory, learning, and attention.

4. Find time for mentally stimulation activities:

If we try taking part in mentally stimulating activities daily, it can increase brain volume and expand our cognitive reserves. By doing these activities daily or at least every other day, they can help protect us from memory loss and other cognitive changes. Simply giving our brain a good workout with thought-provoking activities could prove to be fun and keep our brain healthy. It may be beneficial to make time in our schedule for something such as:

A. Complete a crossword puzzle, Sudoku puzzle, or any other word or numbers game. I love Sudoku puzzles but have never been good with crossword puzzles, but then again, I have not actually tried.

B. Read books, magazines, or other types of materials.

C. Write diary/journal entries, short stories, or poetry (all for your eyes only if you choose)

D. Paint, sculpt, or other types of work of art.

5. Try getting some exercise:

Getting a little regular physical activity is vital for our overall health. This does not mean we must join a gym and go every day; it can be something simple and easy to do at home. Exercise can possibly help with various things, such as:

A. Preserve OR increase brain volume.

B. Improve cognitive processing speed

C. Boost memory

D. Lessen fatigue.

E. Decrease the risk of depression.

I hope the information provided in this post was helpful for you or someone you know. It is important we do all we can to protect our brain health, which can help to prevent any additional challenges with Multiple Sclerosis. I decided 20 years ago when I was first diagnosed with this disease and promised my late Grandfather, I was not going to allow it to defeat me, and I would continue to fight until I lost the ability to do so which has not happened yet!

Thank you for visiting my site today! I always appreciate your continued support and enjoy reading your comments, which I do my best to respond as quickly as I can. I hope your week is going well and you are looking forward to the upcoming weekend, which is finally almost here! I do hope any plans you have for the weekend you will remain safe!! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Multiple Sclerosis Awareness Month

Posted on March 7, 2021 by Positively Alyssa

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!

Always, Alyssa

Tranquil Tuesday

Posted on November 3, 2020 by Positively Alyssa

~My 20 Year Battle With Multiple Sclerosis~

Many of you already know that I have battled my fight with Multiple Sclerosis for going on 20 years now. Most days I can’t even believe it has been that long and yet I still remember the day I heard the doctor say the words to me “Alyssa, you have Multiple Sclerosis.” I was a 19- year- old girl, alone in the exam room, and was in complete shock. At the time of my diagnosis, I was naïve, scared, and did not know what my life was going to be like. I only knew one person that had MS and she was in a wheelchair. Being so young and clueless I thought I was going to be diagnosed, and then bound to a wheelchair, and then death. I know how ridiculous that sounds now because I have a better understanding of this disease.

Of course, the past 20 years have come with many ups and downs, but not only am I still here to talk about it and hopefully help others living with chronic illnesses. Yes, I do live with various issues, but I have learned to live a fairly normal and full life with all of it. I think it is important to understand that no matter what our struggles are in life, we can learn to make the most of it. Life is short and no one ever said it was going to be easy. I think the more struggles we overcome, the stronger we are.

It has been a while since I have written about Multiple Sclerosis and considering I had an appointment a little more than a week ago with my new neurologist; it might be a good time to write a little about what I deal with day in and day out with Multiple Sclerosis. The real reason I do not write much about it anymore is I do not think it is good to dwell on things we have no control over, but it is important to help others that do not have MS understand what it is all about and others that live with this unpredictable disease to know they are not alone. I say this because I remember when I was first diagnosed, I felt so incredibly and painfully alone.

One of the most important things when living with any chronic illness is finding a specialist that you trust and can work well with. Over my years with Multiple Sclerosis, I have had my fair share of specialists that I respected and trusted, but then there were those I would do anything just to avoid them. The only reason those I trusted, respected, and admired are not my specialist anymore is that they retired. I have only met my new specialist was virtually, but she said one thing that won me over, she knew, admired, respected, and loved my first neurologist. As simple as this may sound, I have been missing my first neurologist since the day he retired. It did take me time to be accepting of him because he was the one that confirmed I had Multiple Sclerosis. The only reason I left the practice he was at is because the neurologist that was taking his place insulted him when speaking with me and this was a HUGE no, no!

During my two decades of living with Multiple Sclerosis, (WOW that sounds like a LONG time), I have faced and dealt with various issues. Of course, some of what I have struggled with have ranged anywhere between being a minor inconvenience to almost unbearable, and everything in between. Symptoms involved with Multiple Sclerosis and any other chronic illness can be different for each individual because we are all unique.

I am sure that most of you know about Multiple Sclerosis because you or someone you know has it, but I am going to take this time to provide you a brief overview, and then I will describe the issues I battle with every day of my life. I will begin by explaining what Multiple Sclerosis is.

What is Multiple Sclerosis?

Multiple Sclerosis is a disease that may become disabling of both the brain and spinal cord. With MS, the immune system attacks the myelin, which is the protective sheath covering nerve fibers and creates communication issues between the brain and the rest of the body.

What are the types of Multiple Sclerosis?

Unfortunately, in 2020 there is still not a way to foresee with absolute certainty how a person’s disease will advance and or how fast this will happen. The four main types of MS have been established by the: International Advisory Committee on Clinical Trials of MS and were defined as the following explanations.

Clinically Isolated Syndrome (CIS):

This is the first occurrence of neurological symptoms that are caused by inflammation and demyelination in the central nervous system. Although the occurrence must last for at least 24-hours to be considered a characteristic of MS, it still doesn’t meet the specifications for an MS diagnosis because those that experience CIS may or may not have MS.

It is when CIS comes along with lesion on a brain MRI, which is typically seen in MS, that the probability of the person having a 2^nd MRI is high, and being diagnosed with RRMS is very common.

Relapsing-Remitting Multiple Sclerosis (RRMS):

This is the most common form of MS with 85% of people being diagnosed originally with it. RRMS is distinguished by undeniably defined attacks of new or increasing neurological symptoms, which are known as relapse or exacerbation and are typically followed with partial or complete times of partial or complete remission. While in remission, all symptoms may disappear or the symptoms may continue and be permanent, but during this time there isn’t any progression seen. RRMS can be further described as either active, which is with relapse and or confirmation of new MRI activity in a specific time frame, or NOT active, as well as worsening or not worsening.

Secondary Progressive Multiple Sclerosis (SPMS):

Secondary Progressive Multiple Sclerosis is a type when one was initially diagnosed with RRMS and progressed into SPMS. The progression from RRMS to SPMS is due to the increasing worsening of neurological function over time. SPMS can also e distinguished as either active, not active, as well as progression indicating disability accrual over time.

Primary Progressive Multiple Sclerosis (PPMS):

Primary Progressive Multiple Sclerosis is classified by increased deteriorating neurological function from the onset of this disease and without early relapse or remissions. Just like the first few types of MS, PPMS can also be distinguished as active, not active, progression, and without progression. Only about 15% of people with MS are diagnosed with PPMS.

The symptoms for each person living with Multiple Sclerosis might be very different, slightly different, similar, but they will never be exactly the same because we are all very different. I really did not mean for this post to get so long, so I will briefly share with you the symptoms I deal with both daily and or randomly.

The way I discovered that I had MS all those years ago, is because I lost vision in my left eye and went to the eye doctor. Never in a million years did I expect that this vision loss was the start of my journey with Multiple Sclerosis. After going through the MRI to confirm the doctor’s suspicions, I was put on an insane amount of steroids, which even though I completely and utterly detest steroids; they did help restore my vision. One would think I would have been relieved to learn I wasn’t going blind, but I often think the diagnosis was worse than the diagnosis.

Through the years, I have experienced a wide range of symptoms that have varied from mild and tolerable to awful and intolerable. A few things that have been a constant are pain, numbness and tingling, and spasticity. Sometimes I think that if I had one day without any pain, numbness and tingling life wouldn’t seem as normal. My legs always have that numbness and tingling sensation from my knees to the tips of my toes. It can make walking be challenging depending on how bad it is, but normally I am fine with walking. My back hurts every minute of every day from the middle to lower back, but I try not to let that get me down too much. There are times when the mixture of pain, numbness, and tingling can contribute to muscle weakness. I also experience a lot of fatigue and then have a hard time falling asleep. It is an annoying cycle!

Another symptom I have dealt with over the past two decades that is not very often is vertigo. There was a time several years ago when I was having vertigo very bad, but had a doctor’s appointment with my neurologist and drove myself to the appointment. I did well driving when a little dizzy because I managed to keep between the lines. It is insane that I hardly could walk a straight line, but drove perfectly fine! I have also dealt with the MS hug, which is not a huge anyone ever wants. The MS hug feels like there is a huge snake around you and just keeps squeezing. Another issue I deal with at least three times a week is headaches/migraines. Headaches/migraines are a form of pain that I can’t deal with.

Thank you for visiting my site today and reading about my LONG journey of living with Multiple Sclerosis. It has been a long journey and one I never wanted, but one I wanted to give up on 20 years ago. I am thankful that I did not give up and followed advice from my dear Poppy. When I was diagnosed, my Poppy told me that I was strong enough to handle this disease and to always remember that no matter what I am going through, someone else is going through something a lot worse. I have held onto his words all these years and hope that I can inspire y’all to never give up because you are far stronger than you ever knew.

I know this post got a little long and longer than I anticipated, but there is so much involved when living with Multiple Sclerosis. All the challenges you experience throughout your life are making you stronger and therefore you can inspire someone else to never give up! I am looking forward to reading your comments and I promise to 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

What is Multiple Sclerosis?

Posted on March 4, 2020 by Positively Alyssa

What is Multiple Sclerosis?

March is Multiple Sclerosis (MS) Awareness Month. Multiple Sclerosis is an incurable neurological condition that affects the brain, spinal cord, and optic nerves. The body’s immune system attacks the protective myelin sheaths that cover the nerve fibers which cause areas of scarring, known as sclerosis. The immune system also attacks and destroys the fatty myelin coating that surrounds and insulates nerve cells which is a process known as demyelination.

Experts suggest there being 250,000-350,000 people in the United States currently living with this illness. There is an indication the rate of the disease is increasing regularly in the 20^th century with approximately 200 new cases each week. Those of Northern European descent have a higher risk for the disease, but Native Americans of North and South America and Asian Americans are at a lower risk. The disease is much more common in colder climates.

There are four types of Multiple Sclerosis, all having different characteristics.

Relapsing-Remitting Multiple Sclerosis (RRMS). This is the most common form, being that 85% of those with MS are initially diagnosed with. Patients with this form will have relapses and periods of stability in between the relapses. Relapses are the episodes when new or worsening symptoms that are not caused by fever or infection appear. These episodes typically lase more than 48-hours. Between relapses are periods of remission where there is no clinical evidence of disease progression. Periods of remission can last for years, but this can range from person to person.
Secondary-Progressive Multiple Sclerosis (SPMS) can basically be considered the second phase of the disease. Most people that are initially diagnosed with RRMS will transition to this form at some point. Symptoms with SPMS will worsen steadily over time with or without occurrences of relapses or remission. There may or may not be times of relapses caused by inflammation, but will continue towards the progressive phase indicating nerve damage or loss. With this form of MS, the disability only continues to get worse.
Primary-Progressive Multiple Sclerosis (PPMS) is less common than the other forms and only affects 10-15% of those with MS. On average people with PPMS start having symptoms between 35-39 years old. There is a slowly worsening of symptoms from the beginning with no relapses or remissions. With this type of MS there can be times of short-term, but temporary, minor improvements, however the decline of neurologic progression is constant. Symptoms of PPMS include pain, electric-shock-sensation running down the back and limbs when the neck is bent, trouble walking, vision problems, muscle weakness, trouble balancing, paralysis, numbness, prickling feeling, dizziness, shakiness, trouble thinking clearly, mood changes, depression, sexual problems, and trouble with bowel and bladder control.
Progressive-Relapsing Multiple Sclerosis (PRMS) is a rare form of MS. There will be a steadily worsening of the state of the disease from the beginning with acute relapses, but no remission will occur. The symptoms of this form are the same as those with PPMS.

The first neurologic event suggesting MS is known as Clinically Isolated Syndrome (CIS), which usually lasts at least 24-hours. The symptoms will indicate a single lesion (Monofocal) or more than one lesion (Multi-focal) in the central nervous system (CNS). There are many symptoms involved with Multiple Sclerosis some being common and others being less common.

Common Symptoms Associated with Multiple Sclerosis

Fatigue (Mental and Physical)
Pain
Tingling or burning sensation in the arms, legs, trunk of body or face
Vision issues (blurred or loss of vision)
Stiff muscles
Attention and memory issues
Dizziness, vertigo, and clumsiness
Trouble walking

Less Common Symptoms Associated with Multiple Sclerosis

Migraines
Speech problems
Body tremors
Seizures
Hearing loss
Itching for no reason
Mood changes such as depression or euphoria
Ability to concentrate or multi-task effectively
Difficulty making decisions, planning or prioritizing

Secondary Symptoms that can develop

Bladder and bowel problems
Difficulty breathing
Osteoporosis
Muscle weakness
Difficulty swallowing
Sexual health issues

With all the possible symptoms one can experience, there are ways to manage most of them. Bladder control can be something one can experience and this can be rather embarrassing if it happens out in public, but there some suggested strategies to manage this.

Drink enough fluids. The kidneys need at least 2 liters of water daily in order to flush waste products. Do not try rationing intake because this could increase the risk of infection.
Time your drinks. Try to spread fluid intake evenly throughout the day.
Limited caffeine and alcohol intake. Both of these can increase the amount of urination.
Special exercises such as exercises that strengthen the pelvic floor.
Continence aids such as disposable pad can be beneficial.
Medication can be provided to reduce the urgency to urinate and help the bladder empty itself.

Pain with MS can be primarily due to the neurologic condition. Pain could also be due to secondary conditions, such as musculoskeletal issues as a result of altered posture or spasticity. The weakening of leg muscles tends to trigger aches and pain in the back or knees. The unfortunate truth is, people with Multiple Sclerosis can feel pain anywhere, but there are ways to help manage the pain which includes medication, physical therapy, and relaxation techniques.

Every person that lives with Multiple Sclerosis is different and deals with this illness in a way that serves them best. A person can experience similar issues as another but at the end of the day, we all handle it differently. Each symptom, relapse, remission, and medication affects each person vastly different but yet can understand what another person is going through. It is vital that no matter what stage the illness is, there needs to be an understanding of what our limitations are and to never push beyond that.

Thank you for visiting my site today! I hope the information I provided to you was helpful. There is a chance I have stated the same thing in previous years, but I do feel it is important for us to spread as much awareness as we can because it does not seem like this illness is going away anytime soon. I do want to believe that someday in our life time there will be a cure, but until then we must continue to live our lives the best we can. I hope you are having a great day and feeling the best you can. Please never forget that I am always sending y’all LOTS of love , comfort, and many positive vibes!

Always, Alyssa

P.S I will be doing additional posts about MS during the month, but felt they needed to be separate posts because there is SO much information available. The crazy thing is, no matter how many years I have lived with MS, reading about it is a little upsetting.

Pick-Me-Up Thursday!

Posted on March 28, 2019 by Positively Alyssa

Good morning y’all! I hope you have had a great week and you are looking forward to the weekend that is SO close, I know I sure am! It’s rather nice not really having any plans and even better to know I will not hear an annoying alarm go off early in the morning! Y’all know I am still getting use to my new job and I do have a lot to learn, so I have not been able to blog as much as I would like. I am often so tired when I get home and it is just too difficult to get on a computer again. I would like to catch up on reading all of your amazing blogs this weekend, but we will see how that goes!

I missed my Pick-Me-Up Thursday last week, but didn’t want miss it again this week! The quote I want to share with you today means a lot too me and it’s because of my previous post this past Tuesday. I believe that if we can all join together there is a chance we can have even more success! The is power in numbers and we all understand each other very well! I really hope you find this quote as powerful as I do!

I often feel that living with a chronic illness can and does make life pretty difficult, especially when many are against providing us with protection with health insurance. It shouldn’t be like this, but unfortunately it seems to be, especially in the United States where pharmaceutical companies run the thoughts of the weak-minded, again no names being mentioned! It you read my post from Tuesday, you will know why I am pushing standing together through the hard times we can possibly face!

I want to thank y’all for stopping by my site today and I really hope y’all have a fantastic day! I do always encourage you to leave a comment, which I will respond to as quickly as I can because I love reading your brilliant thoughts! Please never forget for a second that I am always sending y’all LOTS of love , comfort and many positive vibes!

Always, Alyssa

Outraged!

Posted on March 26, 2019 by Positively Alyssa

I can’t believe it’s only Tuesday because it certainly feels we should be much closer to the weekend. It is crazy how fast the short weekends go by and then how LONG the work weeks are. I am thankful I found a job that is close to home and all, but strongly believe 40 hours a week is too much for anyone to dedicate to a job! I think it is even more outrageous that here in the United States we are often forced to wait 90 days before we can even get insurance, not to mention the fact it is INSANELY expensive! I mean, if I were to get insurance for myself and my husband the cost per pay check would be more than a quarter of my paycheck!

I know I have written about this before, but now it is getting painfully more real! The news I heard, after a long day at work, was so disturbing and caused me so much ANGER, as it would anyone with a heart and any empathy for others! For someone during their campaign they ran to become president, no names being mentioned of course, saying they wouldn’t do anything negative to those of us with pre-existing conditions, to now doing the EXACT OPPOSITE and trying to eliminate protection for pre-existing conditions! I know this person in the white house has some crazy issues with the former president, but to banish the good things that were done is very wrong. How anyone could still support this person is beyond me because I sure as hell couldn’t and never would! There are millions of people in the United States that will be affected by this and many could even lose their lives if anything happens to their health insurance.

I try my best to keep my blog encouraging and never talk politics because we are all entitled to our opinions, but when something can change my own life for the negative, I can’t help but to share my thoughts on the matter! I have been trying to tell myself that no one would ever think about doing something so awful and ruin lives for so many, but it just may happen! Striking down the Affordable Care Act, as has been put on the table, is wrong on so many levels, no matter what your political views are! I wish there was something more I could do to stop anything like this from happening, but I do not even know what that would be! Of course I can write about it, but I don’t know how much that will really change the issues! I do understand there is a chance that nothing being proposed will pass, but what if it does? How can anyone afford the medications they need to live their lives? I know there is absolutely NO way I could ever afford the medications I take to slow the progression of my Multiple Sclerosis down without insurance. Where would this leave people battling with a chronic illness and does anyone in power really care??

I am sorry for my second rant in a matter of days, but I am hoping we could some how all join together and find a way to help make things better for millions of people! We all deserve WAY better than this and it is shameful we are facing this fear now! I have always heard that there is strength in numbers, so all I can do is hope for better times!

Thank you for visiting my site today and reading this rant! My frustrations are sky-high and the only thing I know to do is write about them! This helps me calm my nerves and ease my stress some! I hope y’all have a pleasant and relaxing evening. I always encourage your comments and I will respond as quickly as I can! Please know that even though I am a little high-strung right now about all this, I am always sending y’all LOTS of love , comfort and many positive vibes!

Always, Alyssa