My Years With Multiple Sclerosis

Posted on January 6, 2024 by Positively Alyssa

Even though I have lived with Multiple Sclerosis for more than half of my life and have a solid foundation of understanding it, there are still many unknowns. After all these years of fighting against the unpredictable nature and uncertainties of this disease, I still try to hold onto the hope that one day there will be a cure. Unfortunately, the Internet has too much misinformation and can cause people newly diagnosed or those who have had Multiple Sclerosis for years to become discouraged and feel hopeless. As someone living with this disease, I understand all the negative emotions that can be felt, but I also know how a positive mind can help to combat these emotions. Of course, one reason I have this mindset is because of a promise I made to my late grandfather to never let this disease defeat me. Some days keeping this promise seems nearly impossible, but I can hear his voice in my mind, and it gives me the strength I need to carry on. Plus, this man never let me down, and even though he has been gone since 2013, I believe he is watching over me and I refuse to disappoint him.

It has been 23 years since I received the call with the news regarding my first MRI. My previous eye doctor was the man who pieced the puzzle together when I went to see him because I had lost vision in my left eye. I can still remember being alone in the exam room, terrified I was going blind in one of my eyes. The doctor ran numerous tests and consulted with several of his colleagues before explaining his suspicions that I had Multiple Sclerosis. Once he finished his explanation and I stopped crying long enough, he told me he scheduled me to have an MRI that night. I kept myself composed until I was in my car before bursting into tears again. I went for the MRI only a few hours later, and the call I received was from my eye doctor at 9:30 PM to let me know the MRI revealed his suspicions to be true. Thankfully, my very kind and understanding eye doctor had a friend who was a neurologist, and he fast-tracked an appointment with him, so I avoided all the red tape.

Over the 23 years I have lived with Multiple Sclerosis, there have been good and bad days. Learning to understand and accept this disease are two very different challenges. Even though I could understand the simple terms about Multiple Sclerosis and treatment options, it was not as easy to understand there was no cure. I am thankful for how patient, understanding, and understanding my first neurologist was because he talked me through everything calmly and never once got frustrated with my questions. This fabulous neurologist made understanding the disease easy, but he did not have the magical power to help me accept it any faster because that was something I had to do on my terms and my time. Even though he wanted me to get a disease-modifying medication quickly, he did not push or force me. I think he knew if he tried pushing me too hard, I would shut down and be noncompliant.

When I began my blogging adventure, my goal was to share information and spread awareness about Multiple Sclerosis. I have not done as much as I would have liked, but that is because it can be a touchy and sensitive topic. It is hard enough living with this daily, so when doing something such as writing that provides me comfort and an escape, writing about something that can be upsetting is not easy. No one asks to have any condition or conditions they must endure, and they sure as heck do not deserve it. As a 19-year-old girl, I used to think Multiple Sclerosis was a punishment for something I must have done wrong, but the older I have gotten, I know that is not the case. For some people, they have conditions like Multiple Sclerosis and worse because they are strong enough to handle them and view their disability as a badge of courage. Anyone who battles a condition that can cause extreme pain and still push forward in life should be considered a warrior!

In hindsight, things could have been much worse than they are. Considering there are four different types of Multiple Sclerosis, I am lucky the one I deal with is on the mild side. Even though I understand this, that does not mean my struggles are not miserable at times. It has not been the entire time I have had this disease, but for the past 12-15 years, I go to bed in pain and wake up with the same pain. There is not one minute in the day that I do not have pain, but I now view the pain as an alert I am still alive. I am not sure what I would do if I woke up one morning and did not have pain. If this ever happened, I would think I was dreaming or something worse. It is funny how humans can adapt to awful things and consider them normal.

Thank you for stopping by my site today. If you are someone who lives with Multiple Sclerosis, how long have you had this unpredictable disease? Do you think the medication you are on has helped keep it as under control as possible? I have tried several different treatments, but the only one that seems to help me is Gilenya. The reason this medication helps me keep Multiple Sclerosis at bay is taking a pill once a day is far easier for me than the injection types because I was terrible with them. Everyone is different, and a medication that works for one person might not work as well for another, and there is nothing wrong with that because we are all unique. I think it is often a trial-and-error kind of situation. I would love the opportunity to read your comments, and I will respond as quickly as possible. Please never forget I am always sending y’all LOTS of love♥, comfort, support, and MANY positive vibes!

Always, Alyssa

20 Plus Years….

Posted on October 30, 2022 by Positively Alyssa

For the past 20-plus years, I have been forced to live with an incurable illness, Multiple Sclerosis. There have been various challenges I have encountered during the years, but the most frustrating has been how extremely unpredictable this illness is. It does not seem to matter if I follow my doctor’s recommendations and take the necessary medication daily, things can still go wrong. I do realize that I am one of the lucky ones living with this illness as it has not caused me to be disabled and required to use a wheelchair or a cane, but it has caused me many issues.

Of course, I have learned to deal with the pain that I feel 24 hours a day, 7 days a week, 365 days a year as much as anyone can. Lately, the issue that has made me nervous is the increase in dizziness. This is an issue I have dealt with randomly before, but it has been way too frequently over the past few weeks. I have not let my doctor know about the increased dizziness and not sure that I am going to unless it gets worst. After all, I already know what this could mean and do not want her sending me for an MRI or pushing me to take steroids because both make me miserable.

In the past dizziness was a sign there were new or active lesions on my brain. I think to avoid increased levels of stress. I would rather not have a doctor tell me what I already feel like I know because all that would do is make my stress skyrocket and then cause even more issues. Considering I have lived with MS for so many years, I know the most important thing to do now is to, limit and reduce my stress levels, which will hopefully make things better with the dizziness.

I think taking the right steps to reduce stress is going to be the best course of action. I recently did a post about the benefits of journaling, so I am going to try doing this daily and still blog. Writing is a great way to reduce stress and express positive thoughts and vent negative emotions. Now that the temperatures are cooler, I am going to start crocheting again because this has always been relaxing for me. I would love to be able to donate the blankets I make to those who need them to stay warm.

Do you have any specific things you do to reduce stress and relax? We are all unique and have different ways to handle issues in life, but they are all important. No two people are the same, which is what makes the world so interesting. I believe if we were all the same, the world would be boring and not at all interesting. It would be great if we could all learn to accept our differences and still be kind and understanding to one another because this would make the world a better place.

Thank you for visiting my site today. I hope you enjoyed what I have shared, and you are enjoying your weekend. I am looking forward to reading your comments and I will respond as quickly as I possibly can. Thankfully, we do still have one day left to enjoy the weekend and I hope you can do so safely. 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

Motivational Monday

Posted on March 22, 2021 by Positively Alyssa

~Let Us Begin This Week With All Positive Thoughts~

Happy Monday y’all! I hope you had a nice, relaxing, and safe weekend, and you are ready to begin this new week. My weekend was uneventful which is a great way to spend the weekend or at least it is for me. The only bad part of the weekend was I could hardly sleep but 2 hours on Friday night, so Saturday I was exhausted. The crazier thing was, there was no reason for me not to sleep Friday night. Normally, when I have sleepless nights I am worried about something or stressed and I do not think I was, at least not consciously.

As our week begins and the weekend has ended I always feel we might need a little motivation to get us started in the best way possible. I try to share quotes that I enjoy, but do hope the one I am sharing today will serve you with the motivation and inspiration you need. Most of us think of Jim Carey as a comedian, but he can be insightful like this quote indicates. Of course, I hope your week begins well and continues to improve with each day that passes. I am looking forward to reading your comments and promise to respond as quickly as I can, which will probably be when I am out of work.

As y’all know March is Multiple Sclerosis Awareness Month and I am planning to do a few more posts about MS. I have my virtual appointment with my neurologist tomorrow afternoon and I am hoping we will be discussing the MRI I had several weeks ago. In the past, I was always nervous about hearing the results, but I did read the report and it looked to me as a good report with no terrible changes. I guess I will hear what the neurologist says and I will keep y’all informed.

Thank you for visiting my site today! I hope you have a great and safe day will very little unnecessary stress. I have learned over the years that most things I stress over are not as important as I think they are and should just let go of these things. I cannot say I always let go of things, but I am trying. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Finally, some good news!

Posted on March 12, 2021 by Positively Alyssa

Good afternoon y’all! I was not able to do my normal Let It Go Friday post, but do have an even better one to share with y’all! I hope you had a good week, and you are ready to enjoy your weekend safely! Do y’all have any plans for the weekend? We were thinking about going to look at kittens, but I think we are putting this on hold for a little while. We might hold off for summertime because there is a ragdoll mama that will be having kittens and they will be available!

There is always so much bad news we hear about daily, so when we finally get good news it is something to celebrate and share! I believe I told y’all that I was waiting for my reapproval for my Gilenya copay assistance. This medication had worked very well keeping my Multiple Sclerosis at bay, which is wonderful. The only problem with this medication is the cost. With insurance, but without copay assistance, this medication would cost $8,000 per month. Logically, who can afford something this outrageous?

I had mailed the application to the Gilenya Go Program about 2 weeks ago because I do not have a fax machine at home, we all know how slow mail is! Anyways, last week I received a request for additional information from the Gilenya Go Program. Thankfully, while I was at my doctor’s appointment last week, the nice ladies there faxed the paperwork that was requested for me. Today, I heard the BEST news I have heard all month, and my application was approved. Instead of paying $8,000 per month for this medication, I will pay nothing!

Of course, I have not had an appointment with my Neurologist to go over the results from my MRI, but I did read the report. From what I read and not having a medical license, it appeared that the results were stable, and nothing had changed from the previous MRI I had a few years ago. In my naïve and not professional thoughts, no change is much better than changes for the worst! This is all thanks to the Gilenya that I take daily for my MS. Previously, after I had an MRI, I dreaded the results because there were normally negative results.

I have an appointment on March 23^rd to hear my neurologist talk about the results in medical terms. I am not dreading this appointment because from what I read, my results are not awful and remaining better than they were in the past! I am just extremely relieved that my application with the Gilenya Go Program was approved and I will be able to get the medication every month, without any delays or problems!

Thank you for stopping by my site today! I know we are all busy and I appreciate you taking the time to read what I wrong, and share your amazing comments. I hope you have a great Friday and a fantastic, and safe weekend! 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

Headache & MRI

Posted on March 2, 2021 by Positively Alyssa

After work yesterday I went to have my dreaded MRI. I have been dreading getting another MRI for about three years, but finally did not have a choice and had to get it. I already mentioned that the MRI is insanely expensive because of our ridiculous healthcare in the United States. I think I have had an issue with the healthcare issue for a long time because we are the ONLY developed country that does not have “free healthcare”. It seems that many Americans believe that free healthcare is wrong, and I cannot understand their logic. I have heard from many people living in countries that do have free healthcare and they love it.

The complaint I have heard about free healthcare is you have to wait a long time before seeing a specialist or having a procedure, such as an MRI. The thought process is ludicrous and typically the thoughts of someone that believes what the politicians are saying, which is mostly lies.

Anyways, my MRI was not that bad. It was EXCEPTIONALLY long and LOUD. One of the images felt more like a small earthquake because it felt like the entire machine was shaking vigorously. The other images had annoying sounds that were way too loud. I can say the two radiology techs were nice and told me how long each image would take. Midway through the MRI, they pulled me out to add the contrast, and at that time, I told them that one of my hands and both feet and my back were numb. They laughed and said it was probably because I was trying too hard to stay still, which was true, but I did not want to be there any longer than I had to for images to be taken again. I did ask one of the techs if anyone had ever told him that he caused headaches with all the loud noises, he just laughed and said he had heard that a few times before!

I am sure many of you have had an MRI before and know how not comfortable it is. Did you ever notice the moment you are in the machine and told to stay still, everything itches! My hair kept blowing in my face and making my nose itch, and almost every part of my body itched as well. I think it is just because I was told to stay still, and I am not good at being still for long periods. The good news is, I was told I did well, and all images were taken the way they needed to be.

I do know that I am not excited about hearing the results and would prefer my specialist just tell my husband. I figure he would be able to give me the news better if it is not good than the doctor could. I tend to think that most neurologists have the personality of a fly if that! I did have a neurologist previously that was amazing and truly kind, but he understood me and my personality because I reminded him of his daughter. I cannot begin to say how much I miss him! I think I like the Nurse Practitioner at my new specialist office better than the actual doctor, but that is how I normally am.

I am glad the MRI is over and hopefully will not need to do it again for many years! I went about three years before this last one and hopefully can do that again! When I do know what the results of the MRI are, I will do a post about it and share the news, whether it is good or bad news. Let us just hope for the best!

Thank you for visiting my site today. I know I normally do “Tranquil Tuesday”, but felt it was better to tell you about the MRI experience. Overall, the MRI was not as awful as I was making it out to be, but it did cause a mild headache. I hope you are having a good week and staying as safe as you possibly can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!

Always, Alyssa

Thoughts of Chloe & an MRI

Posted on February 28, 2021 by Positively Alyssa

~We will always miss Chloe~

Today, I am going to write about two different things. One topic is about today being three weeks since we lost our sweet little girl, Chloe. The second topic is the MRI I am being forced to get. Both topics are weighing heavily on my mind, so I need to write about them because that is how I cope with difficulties with life. The one thing that is and always will be a constant in our lives is challenging times. There is no way to avoid challenges, but we need to be able to address them head-on!

I think most of you already read my post about when we lost Chloe. I cannot believe it has already been three weeks since that precious little girl took her last breath. Even though this loss was extremely painful, and we are still struggling with losing her, we can find some comfort, and peace that we provided her with a wonderful life full of love. The Friday before Chloe passed, we had been informed by her doctor that she probably would not make it through the weekend. Of course, the offer was made we could have put her to sleep, but I am glad we decided not to, and she was able to pass in the comfort of her home and on my lap.

Tomorrow, after work on I am going to get an MRI (Magnetic Resonance Imaging). If I remember correctly, my last MRI was almost three years ago, and while I was dealing with a relapse. Of course, this type of testing is non-invasive and does not include any pain. I am sure most of you have had an MRI in the past, so you know they are uncomfortable, in part because they seem longer than they are, and you cannot move, or the image will need to be done again.

The images generated from an MRI enable doctors to see lesions in the CNS (Central Nervous System). Depending on the type of damage and the scan used, lesions will show up as white or dark spots. An MRI will show damaged areas called lesions, or plaques on the brain or spinal cord and can be used to monitor disease activity or progression.

An MRI with contrast dye can show MS disease activity by showing a pattern consistent with inflammation of active demyelinating lesions. Contrast dye is a substance injected into the vein and used to make certain types of lesions show clearer on the MRI scan. Demyelinating lesions are a kind of lesion that is either new or increasing in size due to demyelination, which is damage to the myelin covering certain nerves. The images obtained with contrast can also indicate areas of permanent damage that will appear as dark holes in the brain.

I have resisted getting another MRI for several years for a few reasons. One reason being, they are insanely expensive, even with insurance. The estimate for the MRI I am getting tomorrow was $2,700. The price does not make sense to me because I do have insurance and almost makes me wonder what the point of is paying for healthcare insurance when I still have an outrageous out-of-pocket for everything. I have said this several times before, but I will say it again, the United States has some of the worst healthcare in the world.

Another reason I have resisted the MRI is that the results do not matter, and I am not changing my MS medication. I feel confident saying the Gilenya is doing what it is supposed to with slowing the progression of my MS. Medications I have been on previously did not work near as well and it could have been because I was not taking them like I was supposed to. I hated doing the medications that involved giving myself shots, so with the Gilenya being oral, it is easier!

The final reason I have been stubborn about getting the MRI is because of COVID. I am still worried about going into the imagining place, but I will be wearing my mask and stay as safe as I can. I am logical enough to know the MRI is needed, but I am not thrilled about going tomorrow. I do not want to hear what the results are because they always make me cry and it is not worth the emotions or stress, so I will have the results shared with my husband.

I hope you are having a nice and safe weekend! I know y’all have busy lives, but I appreciate you taking the time to visit my site today and read what I have written. I look forward to reading your comments and 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

Prisoner of my own body

Posted on September 5, 2018 by Positively Alyssa

In a previous post I shared with y’all that my recent MRI results showed improvement and there were NO new lesions, which is great news! I felt so incredibly relieved with these wonderful results, but for some reason which I am sure is probably stress related, I still feel an incredible amount of pain and burning in my legs/feet. This pain and burning sensation is constant and unrelenting, which is nothing more than frustrating.

Trying to continue doing all that I want and need to do become trying because it seems like not much really help the issues I continue to struggle with. I feel that my body is trying to hold me as a prisoner from my own illness. Isn’t there normally parole from prison? Unfortunately parole has not been offered to me, so maybe that means I have not showed good behavior! I know I do not listen well to my doctor (whom I do my best to avoid to at all costs), but I also continue to ignore the advice from the Nurse Practitioner (NP) that I actually like and respect, considering she worked closely with my first specialist that I just loved! During the MRI results reading with the NP, she encouraged me once again to try things to reduce my stress, considering she seems to believe that is where my pain is stemming from. I am do not agree with her completely on this, but maybe she is right.

Avoiding stress in the world we live in seems completely impossible to me, but maybe and not very likely I am wrong. I mean you are not able to turn the TV on without interruptions from the government, spewing nothing but lies! It is impossible to be out among people without one them mentioning some lie they heard on the news that they of course believe. Avoiding stressors that I have been aware of for a long time is possible, but then through no fault of my own they seep through and then cause me nothing but frustrating feelings. I have even tried to ignore the stress-factors, but all that does is bottle up hostile feelings which tend to come out in rather terrible and unhealthy ways!

Now considering my MRI results indicated improvement, I am left to wonder if the pain and burning sensation that will not let up is just my life. This is what makes me feel that I am nothing more than a prisoner in my own body. How do you break-free when nothing seems to help? All that seems to be happening is the walls are growing taller and more impossible to escape from.

Even though the issues I continue to face are frustrating, I will continue searching for the light I know is there somewhere. There must be an end to the pain and burning sensation and in time I am sure I will figure it out. However, by the time I figure out ways to end the pain and burning I am probably going to be very elderly and in an assistant living home, in which they will have to deal with me! I definitely feel bad for those individuals!

I would like to thank y’all for stopping by my site today. I always appreciate you reading my thoughts for the day and leaving your amazing comments! I hope y’all have had a nice day and I hope you are feeling well. Please remember that I will respond to all comments as quickly as I can, as I really do enjoy the open communication we have. As always I am sending y’all LOTS of love and comfort!

Always, Alyssa

Result are finally in!!

Posted on August 23, 2018 by Positively Alyssa

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Good evening y’all! I hope you had a great day and you are thankful tomorrow is Friday, I know I am! I have definitely had a long week because I was so stressed about what my MRI results were going to show. I can honestly say that worrying and stressing did not change the results!

I am beyond happy to share with y’all that the MRI I had on Friday was MUCH better than the one I had last October. In October, in the words of my neurologist, my brain was on FIRE with many new and very active lesions. That was terrifying for me to learn as I am sure it would be for anyone, but the one I just had improved drastically. The numerous lesions that were causing all my issues last year have healed as much as they are going to! My absolutely fabulous NP was so happy to see how much better my MRI was on Friday in comparison to how horrible it was last year! She told me and my husband how surprised she was to see how much I have managed to improve in just ten short months! She also said that it seems that Gilenya is just the right MS drug for me! I told her that I have NO intentions of changing medications again until there is a cure! I am not preaching that everyone should be on Gilenya because we all have different body chemistry. What works for me might have the adverse effect on someone else.

We did talk about the dizziness and pain I am still dealing with. She has said to me many times before that she thinks that my pain could be caused from the stress I seem unable to control. We have all heard many times that stress is a killer and I do really believe that! You know there is an app for everything, but she shared an app with me about stress and MS. I am going to give it a chance, I mean it can’t hurt anything! This app is available for iPhone and Android under the play store, it is called ImageryWork. There is also a website if you are interested, Imagerywork.com. I have known for a long time that I needed to get a handle on my stress because I have felt what it does to my body. It will be SO INCREDIBLY wonderful if controlling and managing my stress will eliminate the majority of my pain! I think I have lived with this pain for way too long and maybe there is something I can do to help it!

There are a number of reasons I could be experiencing dizzy spells. One the she really pushed on me was eating more! Both her and my husband think I should try eating 4-5 smalls meals each day, which I never do! I am going to try having small snacks throughout the day and not worrying about whether it is healthy or not and if I am going to gain a lot of weight! Weight has always been a huge worry of mine and I know how stupid that is in the big picture. Truthfully, I am NOWHERE near being overweight, in fact I am underweight according to the NP.

So, I guess what I learned today is all the issues I am having, like increased pain and dizziness is my own fault. I am going to work on making the necessary changes to my health so I will actually feel normal, whatever that is! All of the support and encouraging comments I have received from y’all have been SO appreciated. Y’all helped me through a very difficult time, which I guess I kind of caused. I really am very relived that my MS is not progressing like I was thinking and that the Gilenya is doing it’s part for me!

I hope y’all have a wonderful and relaxing evening! Please always know that no matter what I might be dealing with, I am always sending y’all LOTS of love and comfort!

Always, Alyssa