Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!
I have been trying for several days to write a post, but I have not been able to. I have a few reasons why things have been so challenging, and I will try to explain. One issue is I have not been sleeping well due to awful tooth pain. I know my fear of the dentist is very irrational, but I have never been able to shake this fear in all my years. After several mornings waking up at 3:00 AM in excruciating pain and it takes me a while to fall back to sleep, I finally scheduled an appointment with a dentist. My husband and I are still relatively new to where we are living and I did not know any dentists, heck, I hardly knew of any doctors besides my neurologist, but I reached out to an extremely sweet couple that has lived in the city for years for a recommendation. This couple is kind, trustworthy, and I feel confident they would steer me in the right direction, the only problem is the dentist did not have any openings until April 19th, but I have dealt with it this long, what is a few more weeks?
The other issue I have been experiencing is my legs and feet are feeling the annoying tingling, pins, and needles sensation, and a great deal of spasticity. This seems to be getting increasing worst at night, which makes it hard to get comfortable and fall asleep. Even though it is known to those with MS that heat causes issues, previously a heating pad on my legs would help calm the problems down. Unfortunately, a heating pad or a warm bath is not helping at all and I am just having to be patient with my legs and feet, which I am not good at being patient at all!
As y’all know from things I have said in previous posts fatigue is a huge issue with people with Multiple Sclerosis, so not getting anywhere near enough sleep due to my tooth pain and twitchy legs is only producing more fatigue. I do not know about you, but when I get too overtired, I become very irritated with everything. It does not matter how small the issue is, it will make me want to scream and or cry. You can only imagine how I would feel if something huge happened.
I like to think that I am a patient and tolerant person, and always try being understanding because I do know everyone is going through something in their life. It takes a lot to push me to my breaking point, which is not always a good thing because that involves a lot of pent of frustrations. While it can be a good quality to be able to let go of things that are not crucial, the built-up of frustration can be like if a volcano, collided with a tornado, and an earthquake happened simultaneously. This is just me and I might be abnormal because I hold onto things for extended periods of time before anyone would ever know something was bothering me and I know this is something that needs to be worked on and improved.
I am not making any promises because I do not like breaking a promise, but I am going to try finishing the posts I had mentioned before. I know March and Multiple Sclerosis Awareness Month are over, but there are still a few things I want to mention. March being over does not mean that those of us living with Multiple Sclerosis get a break because unfortunately, we still have the same battle to fight.
I would like to thank you for taking the time to visit my site today. I still have so much that I would like to write about, and I am doing the best I can. I hope your week is going well and you are continuing to stay safe. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
As y’all already know March was Multiple Sclerosis Awareness Month. Even though March is almost over, MS for me and everyone else living with this illness will continue to battle with the challenges that come along with it. With that being said, I do want to share a few additional posts to further explain the struggles that Multiple Sclerosis creates.
One thing common with those with Multiple Sclerosis is heat intolerance. Simply taking a hot shower, spending too much time in the sun, or possibly making a hot meal because the stove and oven can make the kitchen extremely hot. The reason people with MS are sensitive to heat and temperature changes is that MS causes nerves to lose their conductive coating, which is referred to as a myelin-sheath.
Heat issues may cause a person with MS to have an escalation of symptoms such as dizziness and/or increased heart rate. I am going to share 6 tips that may help you to defeat the brutality of the heat enemy. Some of these tips might seem like common sense, but they are important to mention, or at least I think it is.
Stay Inside:
Logically, this makes perfect sense, but the warm summer months are closing in on us relatively fast and this needs to be very well understood. Staying inside with the air conditioner or at least fans may contain MS symptoms. Be sure to pay close attention to the forecast and avoid outdoor get-togethers when it is too hot. It will be much better for you and your health to stay inside when the temperatures and humidity increase because you do not want the symptoms to get too awful.
Utilize Cooling Products:
There are numerous cooling products available online and in stores. The MS Society has cooling vests, wrist, ankle, neck, and head cooling packs. These are fantastic cooling packs that can help you to tolerate the heat and even make picnics possible. Something as simple as a cloth dipped in cold water and applied to your head can make a remarkable difference in the way you feel.
Ice Cold Beverages:
On those insanely hot summer days, there is nothing better than ice-cold water with or without lemon. It is amazing what powers and benefits can be had with liquids. Aside from an ice-cold beverage, you may also experience relief from popsicles, ice cream, or frozen yogurt. To save time walking to the kitchen at night and searching for something cold to drink, try freezing a bottle of water and place it beside your bed. This will provide you the much needed cool down without leaving the comfort of your bed.
Cool Down in the Pool:
As the temperatures start increasing, spending time in a pool when possible can give you the cooldown needed. Not only will a pool help you cool down but provide you with some exercises that can be done easily and without high impact on your body that might cause you extra pain. For additional cooling powers, keeping your wet swimsuit on after leaving the pool can be wonderful because it will also keep you nice and cool!
Plug in a fan or fans:
The fan you use does not need to be high-tech or fancy to offer you cooling benefits. A simple oscillating fan that is easy to move to other rooms can provide you great and fast relief from the evil heat. A ceiling fan helps to circulate air, which can give useful relief from the heat as well.
Lighten Up Clothing:
It can be astounding how our choices of clothing can make a considerable difference. Thinking in layers of clothing when we get dressed might serve you as a benefit. Dressing in lightweight and easy to remove clothes allows you to remove layers, as necessary.
I hope the information provided in this post was helpful for you. In the southern state that I live in, I can speak from experience on how awful the heat makes me feel. It typically starts getting a little too hot for me in April and previously when I did leave the house, I would be overheated just walking to my car. A few years ago, I did reach out to the National Multiple Sclerosis Society and they sent me a few cooling products that are phenomenal, and I am thankful to have them. Of course, over the past year, I hardly leave the house, but hopefully, things will become safe again soon.
Thank you for visiting my site today. I know I have been a little off with my typical posts, but life and fatigue sometimes get in the way. I would love the opportunity to read what you thought about this information and will do my best to respond to all comments as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
Multiple Sclerosis can be a challenging illness to live with, but there are often ways to manage the difficulties. Many things can trigger symptoms, but there are also ways to avoid many of these triggers. It takes time to understand what exactly triggers your symptoms and then to discover the best way to avoid them. Just like each person experiences MS differently, each person will have different triggers and ways to combat those triggers. Of course, please remember that I am not a doctor or medical professional, I am just another person living with MS, and have researched the topic. Today, I am going to share 10 triggers and ways to avoid these triggers.
1. Stress: We all experience stress in our life but having a chronic condition like Multiple Sclerosis can create an entirely new source of stress. Other types of stress can be a result of work, personal relationships, or financial struggles. Too much stress for anyone can cause difficult times, but too much stress for someone with MS can contribute to the worsening of symptoms.
Ways to avoid stress might include finding a relaxing, stress-reducing activity that takes your mind off stress. This activity is anything you find enjoyable because this is for YOU and YOUR health. A few things that may appeal to you are yoga, meditation, and breathing exercises. These practices can help you to relax and obliterate risks for causing symptoms to worsen.
2. Heat: Any form of heat whether it be from the sun, sauna or, a hot tub can be too extreme for people with Multiple Sclerosis. This can often time lead to an exacerbation of symptoms. From my own experience, heat is the enemy which is difficult because I love the beach. I think my saving grace at the beach is the ocean breeze!
It is not always easy to avoid the heat, especially where I live in the south. The best way to avoid this is to keep your house cool and purchase extra fans. Also, on days when there is extreme heat avoid direct sunlight, wear light loose clothing, and stay in the shade as much as possible. Steer clear of saunas, hot tubs, and those hot yoga studios.
3. Childbirth: Many women with MS experience a relapse after giving birth. As a matter of fact, 20-40% of women endure a relapse in the period of time after giving birth. Thankfully, my husband and I do not have children, so I have not experienced this issue. Of course, no one can prevent a relapse after childbirth, but this would be a time to take some steps to reduce how severe the impact is. During the immediate days after childbirth, lean on family and friends to assist with your new bundle of joy so you may get rest and take care of yourself. This can help your body recover more effectively.
4. Becoming Sick: Certain types of infection can cause a relapse and MS can create certain types of other infections. Infection such as the flu or even something as simple as the common cold may cause MS symptoms to worsen.
Avoiding sickness can be challenging, especially with COVID spreading like wildfire. Even with the numerous challenges involved with avoiding getting sick, living a healthy lifestyle can help with preventing infections and other illnesses. It is also helpful to wash your hands for at least 20 seconds multiple times a day and distance yourself from anyone that is sick, especially if you are experiencing a relapse.
5. Some Vaccines: While most vaccines are safe and recommended for those with Multiple Sclerosis, certain vaccines contain live pathogens, which can create the risk of exacerbating symptoms. If you are experiencing a relapse or taking certain medications, consult with your neurologist before getting any vaccines because it might be in your best interest to postpone the vaccine. Your doctor will know the best way to handle this and will advise you regarding vaccines.
I will be completely honest with y’all with the medication I take for MS, Gilenya, I was advised years ago to not get vaccines. Of course, that was 20 years ago and so many changes with medications with additional research. I had always been leery of getting anything and it was not due to the needles, I just feared for negative interactions. However, my current neurologist told me things with the Gilenya had changed over the years and the only vaccines that were not safe were the ones that were live vaccines, and I was able to get the COVID vaccine and I can get the flu vaccine if I decide I want it. My neurologist did highly recommend I get the flu vaccine, but I am not in any rush to do this!
6. Vitamin D Deficiency: At least one study discovered that people with lower vitamin D levels have an increased risk of relapse than someone with adequate vitamin D levels. It has been suggested that Vitamin D can protect against developing MS, but even more research that revealed Vitamin D affects the disease as it is needed.
The best way to prevent the issue of Vitamin D deficiency is to make sure your doctor regularly checking your Vitamin D levels. There are supplements available, some foods have high amounts of Vitamin D, and safe sun exposure can help increase and maintain your levels. However, while supplements may seem safe and legit, it is best to discuss any supplements with your doctor before beginning them to ensure there are not any negative interactions and they will provide suitable results.
7. Inadequate Amount of Sleep: Sleep has an important role in our overall health. The body utilizes sleep to repair the brain and restore other areas that have been damaged. When we do not get sufficient sleep, our body does not get the necessary time to rest and rejuvenate. Too much fatigue can trigger symptoms and/or make symptoms worsen. With muscle spasms, pain, and tingling, MS can make sleep rather troublesome.
Considering how vital sleep is for our health, it is crucial to discuss sleep issues with your doctor. Bring the issue to your doctor’s attention can help determine if any other conditions causing the sleep struggles.
8. Poor Diet: A well-balanced and healthy diet, along with regular exercise can be beneficial for avoiding relapses and/or reduces Multiple Sclerosis symptoms. A diet considering of processed foods will not supply your body with the nutrition that is required.
To avoid developing a poor diet habit, working with a dietitian to discover the best healthy eating plan you can carry on with could be extremely helpful. Although, research is not clear as to the best diet is for people with MS, eating healthy foods can have a positive impact on everyone’s health. Concentrate on good sources of protein, healthy fats, and carbohydrates is one of the best ideas.
9. Certain Medications & Stopping Medications Too Soon: The truth is some medications that can make symptoms worse. Your neurologist will need to monitor all medications you are taking to ensure there are no interactions that can trigger symptoms to worsen. Even though some medications can have negative side effects, this does not mean you should stop any abruptly. You should always consult with your neurologist before starting or stopping all medications as to not increase your risk of a relapse.
The 10th Trigger Can Be Pushing Yourself Too Far & Too Hard: As already stated, fatigue is a common symptom for those living with Multiple Sclerosis. With that said, if you have MS and continuously push yourself to go with too little sleep and/or overwork yourself physically and/or emotionally, you might face ramifications. The combination of overexertion and fatigue can trigger a relapse or make a relapse last longer.
The best way to avoid a relapse due to pushing yourself too hard is, be easier on yourself or at least listen to the cues your body is telling you. Start slowing down when you become tired. Rest as much as possible when you can. Understand that pushing yourself to exhaustion, the recovery will take that much longer. It is important to know that our body does know when it has had enough and when it needs to rest and take a break!
I hope the information provided in this post will be beneficial whether you have MS or another chronic condition. Living with any chronic condition can be complex and I am only way too familiar with Multiple Sclerosis, and with March being Multiple Sclerosis Awareness Month, I wanted to be able to share as much useful information as I could.
Thank you for visiting my site today! I hope you have a nice and safe weekend! I am looking forward to reading your comments and I promise to respond as quickly as I possibly can! Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
In previous posts, I have explained that Multiple Sclerosis is an autoimmune and neurologist illness. What this means is MS affects the nerves, but also the body’s defenses to fight disease fails and begins to attack the cells. The immune system attacks the body’s myelin when you have MS. Myelin is a protective substance covering the nerves, so when this happens it leaves the nerves unprotected. The nerves being unprotected makes them vulnerable to damage, which causes them to not function as they would if there was healthy myelin. The damaged nerves create a wide range of symptoms that vary in seriousness.
A few additional facts regarding MS to understand are:
1.Multiple Sclerosis is a chronic condition, which means it is a lifelong condition and it does not currently have a cure. It is important to understand that even though there is not a cure, it is not fatal. There are 2.3 million people worldwide living with MS and they all have the standard life expectancy. It is only in rare cases there might be complications severe enough to shorten the life of a person. Overall, with MS most symptoms can be regulated with medication, adjustment to lifestyle, or both.
2. Multiple Sclerosis affects younger adults, and often women. Although MS can be diagnosed in children and older adults, people are mainly diagnosed between the ages of 20 and 50. Women are two to three times more likely to develop MS than men. If the person is diagnosed is over the age of 50, this is normally called late-onset MS. It can be challenging for older adults to find a diagnosis of MS due to other age-related conditions having similar symptoms.
3. Multiple Sclerosis can be arduous to diagnose. Often symptoms and single tests are not enough to be able to make an accurate MS diagnosis. The challenges are due to the symptoms mirroring the symptoms of other conditions. Numerous tests that can be used to rule out other potential causes of the symptoms a person is experiencing, which include:
A. Blood tests to rule out Lyme disease, which can trigger the same symptoms of MS.
B Neurologist Exam
C. Magnetic resonance imaging (MRI)
D. Visual evoked potential (VEP) test, which looks for impaired transmission present along the optic nerve pathways.
E. Cerebral Spinal Fluid (CSF) Analysis is a way to look for conditions affecting the brain and spine. The CSF analysis is a series of laboratory tests performed on a sample of the CSF, which is a clear fluid that cushions and delivers nutrients to the CNS.
F. Optical coherence tomography (OCT)
4. The symptoms involved with Multiple Sclerosis vary and the list is long. The truth is, there is no such thing as typical symptoms because everyone that lives with this illness experiences it differently. Some symptoms may simply come and go, or some may regain a lost function, such as bladder control. A few possible symptoms include numbness and tingling, vision problems, balance and mobility issues, and slurred speech. The unforeseeable pattern of symptoms is due to whatever nerves are being attacked by the immune system at any given time. Most things are just unpredictable, and we must deal with the issues as they come up.
5. Multiple Sclerosis is comprised of relapses and remissions. Remission is the period of time when the symptoms have improved. Remission does not indicate the MS is gone, but these periods may last days, weeks, months, or in some cases years. Relapse or exacerbation is the incidence of a new symptom or worsening of an old symptom. This occurrence can be mild or severe enough to interfere with the ability to function. No two exacerbations are the same, so it is important to consult with your neurologist when you deal with one.
6. There is a cognitive part to Multiple Sclerosis. All the damage MS causes to the nerves can also impact critical thinking and other cognitive (mental) skills. It is not unheard of or abnormal for people with MS to have issues with memory and or finding the right words to convey what they are thinking. A few other cognitive effects may include:
*An inability to concentrate or pay attention
*Decreased problem-solving skills
*Difficulty with spatial relations, which means the ability to perceive two or more objects positioned in space relative to oneself and in relation to each other.
*It is normal for cognitive problems to create frustration, depression, and/or anger, but these are issues your doctor can help monitor and manage.
7. Multiple Sclerosis has been labeled as an “invisible illness” or “silent disease”, which makes sense because at face value people with MS look no different than those without MS. Symptoms such as blurred vision, sensory problems, and chronic pain cannot be seen by anyone else. However, some people that do require special accommodations, even though they do not have mobility issues and appear to be fine. One reason why MS has been labeled a “silent disease” is that even during remission, the disease is still, unfortunately, progressing, which has been referred to as “silent progression” of MS.
8. Staying cool whenever possible is greatly beneficial. Heat intolerance is another common issue that can cause an exacerbation of symptoms. People with MS may experience an increase of symptoms from hot weather or sun exposure, fever or illness, hot baths, or showers, and overheating from exercise.
It might be helpful to use fans and air conditioning, cool drinks, and/or icy compresses to stay cool. Wearing layers of lightweight clothing that is easy to remove may serve as a benefit as well. Also, utilizing a cooling vest that can be purchased online. Although people might experience a heat-related relapse, it is important to understand that heat does not cause MS to progress any faster.
9. Vitamin D plays a vital role in Multiple Sclerosis. Research has indicated a link between Vitamin D and MS, which showed the nutrient can function as a protector against MS and possibly lead to fewer relapses. Sunlight triggers the production of Vitamin D in the body, but that sun exposure can also lead to heat-induced symptoms. There are plenty of ways to increase Vitamin D without sun exposure which include fortified milk, orange juice, cod liver oil, salmon, tuna, and eggs or there are also Vitamin D supplements available.
I hope you found this information useful for yourself or someone you know. Please just keep in mind that I am not a doctor or medical professional, I am just someone that has lived with MS for over 20 years. I have experienced most of what is in this post, but that one thing I did not do when I was diagnosed was have the CSF Analysis. I have heard it is not pleasant, but people do live through it. There are still a few days left in the month of March and I do plan on doing a few more posts for Multiple Sclerosis Awareness. I do feel like there is a lot of information available and it needs to be shared with as many people as possible!
Thank you for visiting my site today. I always appreciate your continued support and truly love reading your comments. I hope you are having a good week and you are staying safe because COVID is still a threat. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
~Terms to know when living with Multiple Sclerosis~
Whether you are newly diagnosed with Multiple Sclerosis or you have been living with MS for many years, you already know it is hard enough living with MS. Then adding learning and remembering an entirely new vocabulary makes things even more challenging, and confusing. I know there are times I still get a little flustered when talking to my neurologist or try explaining to someone the way I am feeling. I am going to share some useful terms to try to help make things somewhat easier to understand. Please keep in mind that I am not a doctor or medical professional, just a person that has lived with MS for more than twenty years.
Fatigue is one term we are probably all too aware of. This is one of the most common and important symptoms relating to MS. It has been suggested by the National Multiple Sclerosis Society, that this affects about 80% of all people living with MS.
Vision problems tend to be the first sign of MS for many people. This was the way the doctors discovered that I had MS. I think I have told y’all before, I had gone to the eye doctor thinking I was going blind in one eye, but the doctor said as gently as he could that he thought I had MS. I was terrified and only 19 years old, so I was still a child with a naïve mind. Inflammation of the optic nerves is knowns as optic neuritis. This can cause several problems, such as blurred vision, eye pain, and/or blind spots.
Brain fog is not a medical condition, but a term that is used to explain certain symptoms affecting the ability to think. Brain fog can make thoughts seem cloudy and you are not able to think clearly. This might cause you to feel confused, disorganized, and/or find it difficult to focus or put thoughts into words. This is also sometimes referred to as MS brain, cog fog, or cotton brain.
Slurred speech is often due to the loss of coordination of the tongue, lip, cheek, and mouth muscles. This loss of coordination may also result in trouble swallowing.
Loopy, which can be best described as feeling tired and/or almost like you are drunk.
Jelly leg, which may be referred to as jell0o legs or noodle legs. When experiencing jelly legs, you are legs will not work correctly.
Hallway pinball is when your walk is weaving from side to side. With MS, your legs may sometimes feel wobbling, weak, and tired. You might lose some control of your legs and when walking down a hallway, forcing you to bounce back and forth from side to side like something you would see on a pinball machine, hence the name.
Wooden leg or legs is a phrase that is used to describe the stiffness in the legs.
Foot drop is a term used to explain weak muscles that make it difficult to lift the front part of your foot or feet as you walk.
One major symptom of MS is chronic or acute pain. Shooting pains are typically acute, which means they come on suddenly, intensely, and then disappear. Pain is something I have battled with for the past 20 years and it does not get easier with each year that passes. However, I will not allow the pain that my life is plagued with bring me down and will always try to continue pushing through it, no matter how awful it gets. Truthfully, the pain does get worse when it rains or I am stressed. Lhermitte’s sign is a type of shooting pain. This is a sudden sensation that mirrors an electric shock passing down the back and into the spine and might radiate out into your arms and legs. This is usually triggered by bending your head forward towards your chest.
MS hug is a type of hug I never want. This term describes a constricting pressure surrounding the chest or waist area. It feels like there is a snake around you and just continues to squeeze or at least that is how it feels to me. The pain involved with the MS hug can range anywhere from mildly annoying to extremely annoying and tends to come along with a burning sensation. An MS hug is caused by spasms of the muscles between the ribs.
Spasticity, also referred to as spazzy. This is a common symptom of MS and can occur in any area of the body, but most commonly is in the legs. With this, the muscles might feel simply tight or can be extremely painful. There are two types of spasticity:
1. Flexor affects the back of the leg and upper thigh.
2. Extensor which affects the front of the upper thigh and inside of the upper leg.
Twitchy means you are experiencing twitching from spasticity.
Considering MS affects the central nervous system, the pins and needles sensation is common and most often felt in the limbs. This has been something I have dealt with for years and it is not easy to deal with. Even though I am on a high amount of Gabapentin, I do still feel this every day of my life.
Thank you for visiting my site today. I hope you found this information helpful or at least made things a little clearer. Believe me when I say, I understand how hard it is to remember every term used in the medical field and I have learned more by sharing this information with y’all. I think we can all continue to learn more, and we can help one another with this learning curve. I would love to read your comments on this post, and I will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
~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!
Hello Tuesday, my friends! I was not able to do my typical Motivational Monday post because I have been dealing with a nasty migraine for over two days now. The worst of this evil migraine was Sunday evening into Monday, but it is trying to let up a little now. Work yesterday was awful because looking at a computer screen only increased the pain I was having in my head, but I still did the best I could. I was supposed to have a meeting yesterday afternoon, but thankfully the meeting was postponed until this afternoon, I am not sure how well I could have dealt with a meeting with the migraine.
Of course, I endure pain every day of my life and the only pain I am not able to handle well is head pain. My husband was SO attentive and kept getting me fresh ice packs to put on my head and was willing to do anything else I needed. An ice pack typically helps relieve my head pain, but it was hardly touching the pain. When I say nothing provided any relief from the pain, I really do mean NOTHING at all even lessened the pain!
Considering it is still Multiple Sclerosis Awareness month and I have lived with this illness for over 20 years, I am planning to do a few more posts about MS. I know I have mentioned my first neurologist to y’all before. Dr. Kaufman was the first doctor I saw for this unpredictable and irritating disease. No matter how much I fought him and/or gave him a hard time, he never gave up on me. The man had the patience of steel and a heart of gold. His Nurse Practitioner was also a gem and was very compassionate. The two of them as a team were one of a kind and I will never forget either of them.
I did learn some sad news about my previous neurologist over the weekend. Overall, he is fine and healthy but lost his wife to cancer. This nice, loving, compassionate, trustworthy, and amazing man is one of the BEST and I hate to know he has gone through another tragedy in his life. It does not seem like the man cannot catch a break. I sent him a message with my condolences on Facebook, not that he checks those messages, but I did ask the former NP that does stay in touch with him to let him know he is in my thoughts and that I miss him. Then to give him a laugh, I asked the NP to tell him if he moves to the city I live in I will pay for his house, if he will treat me!
Once my evil migraine finally started to settle down and I thought I would be able to finish the post I was working on, my legs, feet, and hands started to misbehave! They decided to work together to create the annoying tingling feeling, with a touch of pain! When this happens, there does not seem to be anything that will relieve the problems. I guess I should be used to this by now, but unfortunately, I am not!
Yesterday was busy at work, which must have been a fluke because today is not at all busy. I am going to try finishing one of the posts about Multiple Sclerosis that I started and will hopefully finish it today, but we will see! To be honest with y’all, I do have a slight and manageable headache, which I think is a result of stress. My legs, feet, and hands are still misbehaving, but it is not as bad as it was last night, and I think is because of the rain we are having today.
Thank you so much for visiting my site today. I hope you are having a good week, feeling the best you can, and staying safe! I do look forward to reading your comments and will respond as quickly as I can. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!
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 23rd 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!
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!
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!
