MS Hug

MS Hug 1Do y’all know what the worst and most unwelcoming hug ever is? The MS Hug is definitely the type of hug none of us really want! It is anything but loving and comforting causing a lot of discomfort and possible pain. The MS Hug is a collection of symptoms that is caused by spasms in the intercostal muscles. The muscles that are involved are located between the ribs. The MS Hug got its “nickname”, so to speak, from the way the pain wraps around the body basically like a hug or a girdle. The involuntary muscle spasms are also referred to as girdling or MS girdling. This not so exciting hug can last anywhere from a few seconds to hours at a time! The good news is the MS Hug does not mean the MS has progressed; it is just having what I refer to as a temper tantrum and will go away!

What exactly does the MS Hug feel like? Like Multiple Sclerosis itself, the MS Hug is very unpredictable and experienced differently by each person. Some that have experienced the MS Hug have pressure around the waist, torso or neck instead of pain. Some people encounter a band of tingling in the waist, torso or neck. Others that experience the MS Hug have a sharp, stabbing pain or a dull widespread aching feeling. During the MS Hug some may also experience a sensation of squeezing, crushing, MS Hugcrawling feelings under the skin, hot or cold burning or even pin and needles.

How is the MS Hug treated? Considering the MS Hug is a result of muscle spasms, the pain that is felt is neurologic in nature. This basically means this is nerve pain which can be difficult to resolve. Believe me I know how frustrating that is to hear, but sadly it is true! I have dealt with the wonderful MS Hug many times and it is never a pleasant hug! Over-the-counter pain relievers such as Ibuprofen or Acetaminophen are not likely to bring any true relief. According to the National MS Society the drug classes approved to treat the nerve pain from the MS Hug are: antispasticity medications (ex. diazepam), anticonvulsants medications (ex. gabapentin) and antidepressants (ex. amitriptyline). Please remember that I am not a medical professional, I just have personal experience with the MS Hug and this is what was recommended to me previously. 

What are possible triggers of the MS Hug? As with everything else involved with Multiple Sclerosis, triggers vary from person to person. However the most common triggers are: heat, stress and fatigue, all times when the body is not running at 100%. This could be an indication that rest needs to increase, take time to cool off from the heat properly and find ways to de-stress. We all know that excessive heat is very unhealthy and that too much stress is detrimental to all of us!

Ms Hug Information - Updated 4/2/13 : General Discussion - Page 2

Ms Hug Information – Updated 4/2/13 : General Discussion – Page 2 – Top Master Data

My personal experiences with the infamous MS Hug have been limited, but they have happened WAY more than I would have liked! I have actually been dealing with this hug on and off for a few days now, but of course was trying to just ignore it as I always do. I have not done the appropriate things to help heal, like finding ways to de-stress. Of course I know better, but I continue to take on more stress instead of brushing it off! It is so important to know there are somethings in life we have NO control over, so why bother allowing that into our lives? I ask myself that question daily, but yet I do always try to help others that do not seem to appreciate or even really want my help! I guess I will learn my lesson someday! 

Just out of curiosity, have any of you experienced the MS Hug? The name makes it sound so sweet and wonderful, but my goodness it has never been welcomed or enjoyed! I am hoping that considering I am doing what is necessary this hug will go away soon and NOT come back anytime soon. I feel like MS does not understand personal boundaries. Unwelcome and unwanted hugs definitely invades my personal space! 

I sincerely appreciate you visiting my site today! I look forward to any comments you may have and I do promise to respond as quickly as I can. Thank goodness we are half way through the week and the weekend will be here soon! I hope y’all have a great and relaxing evening!

Love 2

Always, Alyssa

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Fight for your health!

fight for a cureI hope y’all have a lovely Monday! First day of a new week may bring some wonderful and positive changes to all of our lives! I really appreciate y’all visiting my site today and as always love to read your comments, which I do respond to as quickly as I can! Most of the time I like to write about the random things that are on my mind. This helps me to release all those emotions and then getting your feedback help tremendously, so thank you for all of your fantastic comments!

How do you fight for your health instead of fight against it? It is so important to be vocal with your doctor and never allow them to dismiss what you say or rush you out of the exam room. We all know our bodies and how we are feeling better than anyone, so that should be listened to. I think at times it is hard to admit what our body is telling us and our body feels as though it has to scream it at us, which may cause additional issues. I am one that will ignore issues that arise for as long as possible because I do not want to admit to the problems. Ignoring or neglecting our health will never result in anything beneficial. This is where fighting for our health becomes extremely important. If we ignore what our body is telling us we are actually fighting against our own health.

I am actually going to my MS Specialist on Thursday. I am going to my specialist partially because I am supposed to see her every 6 months and partially because I want to share with her my concerns. I already know going in that my issues with headaches will be dismissed because she seems to think that MS and headaches have no correlation, but I think it is still important to bring the topic up once again. I also want to discuss with her the fact that the issues that came with my relapse in October have not really gone away. I am fully aware that the body heals from each relapse differently, but I should have improved drastically by now and not continue to have pain that affects my ability to work full-time. I just really need answers to why I seem to be at a stand still in health. Do y’all have any suggestions to how to grab this doctor’s attention?

I hope y’all have a great and relaxing evening! As always I am sending y’all lots of love and comfort! Try to hold onto your positive thoughts because they will help in the long run and negative thoughts will only hold you back.

Love 2

Always, Alyssa

Diagnosing Multiple Sclerosis

MS-whiteThe diagnosing of Multiple Sclerosis is an emotional and time-consuming process. People go to their doctor for issues they are dealing with and normally never expect the doctor to come back with a diagnosis of MS, but it happens. Once the doctor expects Multiple Sclerosis as a possibility there are a few tests that need to be done before making the diagnosis become real. The following are the tests that most patients will go through before they get a final diagnosis.

  • Blood tests: These simple tests just help rule out any other possible diseases.
  • Lumbar Puncture: This is a small sample of fluid that is removed from the spinal cord and used for laboratory analysis. This test will show any abnormalities in the antibodies that are associated with Multiple Sclerosis. This test also can rule out infections and other conditions with symptoms that are similar to Multiple Sclerosis. Headaches can occur after a lumbar puncture that can last a few hours or even up to a week. It is also possible to have back discomfort in the lower back which can radiate into your legs.
  • MRI: An MRI reveals areas of Multiple Sclerosis lesions on the brain and or spinal cord. During an MRI you will possibly receive an intravenous injection of contrast material to highlight lesions indicating disease in the active phase.

Early symptoms of Multiple Sclerosis do vary, but a very common symptom is blurred vision or double vision. The main problem that led to my diagnosis was Optic Neuritis. Optic Neuritis in an inflammation that damages the optic nerve, which is a bundle of nerve fibers that transmit visual information from the eyes to the brain. This can be accompanied with Optic-Neuritis1pain and temporary vision loss in one or both eyes. Optic Neuritis does typically improve in time, but can possibly come back at any time. About 50% of people who experience Optic Neuritis develop Multiple Sclerosis. I am not saying that Optic Neuritis is the cause of MS, but it is one of the first symptoms that is experienced.

When I was first diagnosed, almost 17 years ago I immediately had a MRI. Once the results came in from the MRI, I was informed that I had profound MS lesions so I did not have to do the lumbar puncture. I was pretty scared when the doctor mentioned the lumbar puncture to me, so in a strange way I was relieved there were so many lesions to indicate I did have MS. Who would ever be happy they had so many lesions to prove that what they were experiencing was a lifelong illness?

The final diagnosis is not the end of what you go through. There are so many emotions to confront and process. I will say that a diagnosis of MS is not the end and life can still go on. It is so important to remember who you are because you are not just MS! You are still the person you were before you received the diagnosis, you just have a little more to accept and deal with. 

With March being Multiple Sclerosis Awareness Month I had decided that I was going to do several posts about the illness. I think awareness is very important, especially because the amount of people dealing with the illness seems to be increasing. It may currently be MS Hopean incurable illness that we deal with for life, well until there is a cure, but we still have so much life to live! Informing others about what we deal with can be helpful for us and for those we inform because the more that understand, the more hope we have for a cure! I believe in staying positive and looking towards a brighter future!

I hope y’all had a lovely and relaxing weekend! The weekends always go by so fast and there is always so much we want to get accomplished, but often forget a few important things to accomplish, rest and allowing our body to heal! I only left my house once this weekend and the rest of the time stayed comfortable on the couch either reading or writing. I think this was very much-needed and I hope that will pay off for me this upcoming week! I do appreciate you visiting my site today and look forward to any comments you may have. I will respond to all of your fantastic comments as quickly as I can. I hope you enjoy the rest of your weekend and I hope y’all have an amazing week! As always, I am sending y’all lots of love and comfort!

Love 2

Always, Alyssa

A few days MIA

Bright weekI have not made a post in a few days because sometimes life just gets too chaotic and it is hard to do the things I want to do. Life’s obligations can get in the way of good and fun times. Now whether it be work or household chores they all get in the way of leisure times. I know once I get home from work I am exhausted and do not feel like doing much of anything. Granted my job does only consists of being at a desk and most people would think that is not very tiring, but staring at a computer screen all day is exhausting! When you are sitting all day, not being active it weakens your muscles to the point they do not want to do anything else. I almost feel that my muscles go to sleep and do not want to wake up for any such reason. Plus being at a computer all day causes me to feel so much pain in my back and that pain alone makes me fatigued. 

I have been doing my best to increase my hours at work and I have been able to do 7 hour days. I am thankful that my job has been understanding with slowly adding to how much I am able to handle. I have noticed that I feel so much better earlier in the day, but then about noon I start feeling like I have been hit by a ton of bricks. I do however keep pushing a few extra hours so I can hit my 7 hour goal! 

Y’all already know that living life with an illness can add some additional stress and challenges to your daily life. How do you fight through pain when there is not any kind of relief? Even though things have not been easy lately I do still believe everything157213-Fight-Through-The-Bad-Days happens for a reason and somehow everything works out the way they are meant to. I do realize how clique that sounds, but I do believe every word of it.  

The weather plays  huge part in the way I feel. Rain and cold cause my body to feel terrible. We had a few days of bitter cold and I felt like a truck had run me over and backed over me just for good measure. Then Mother Nature decides it needs to be warm, so my body adjusts to that only to have the weather get cold again! Then we have days of sunshine, followed by days of rain or the threat of rain and I feel horrible! If we could just have weeks or months of the same type of weather I could be adjusted and stable!

I hope y’all had a great Monday! I hope the rest of your week goes absolutely wonderful! Always remember how important it is to stay positive even when it is difficult. Strength comes from positivity! As always, I appreciate you stopping by site today and please leave comments as I will respond to you just as quickly as I can! Sending y’all lots of love and comfort always!

Love 2

Always, Alyssa

 

Headaches & MS

reasons

I have been battling horrible headaches with very little relief for days now, which is why I have not been posting anything. I know many people at some point in their lives have experienced a headache of some type with different severity levels. Nothing had been helping my headaches so I decided to look up the correlation between MS and headaches. I found a great article written by PhD Stachowiach, Julie “Headaches as a Symptom of Multiple Sclerosis”, written June 19, 2017. Those individuals that live with MS seem to be prone to the three types of headaches: migraines, cluster headaches and tension headaches. The following is the website where I found this article, https://www.verywell.com/headaches-as-a-symptom-of-multiple-sclerosis-2440798.

Three Known Types of Headaches:

  1. Migraines:
  • These can last anywhere from 4-72 hours
  • Can come along with blurry or distorted vision, followed by fatigue and anxiety
  • May feel a throbbing on one or both sides of the head
  • Sensitivity to light or sound
  • Nausea, vomiting or loss of appetiteheadaches 1
  1. Cluster Headaches:
  • Able to last 15 minutes to 3 hours long
  • Severe burning sensation on one side of the nose or deep in one eye
  • Occurs only on one side of the face
  • Tends to occur at same time every day, normally for a period of several weeks.
  1. Tension Headaches:
  • Most common in the general population of individuals
  • Comes on gradually and may last 30 minutes to all day or even up to a solid week
  • Feels like a constant band-like aching or squeezing sensation either right over the eyebrows or encircling the head
  • Able to occur at any time of day but typically the latter part of the day

There is an association between brain-stem lesions and an increased number of migraines and tension headaches. However, there is no link between the location or number of lesions and headaches of any type. There have been reports that headaches or migraines could be a symptom of an acute MS relapse, which I really hope is not what I am dealing with. Hopefully the week-long headache will soon end and I can enjoy the weekend before Christmas. Considering absolutely nothing has helped this headache, do y’all experience headaches and if so what do you do to treat them?

I hope you had a great week and are looking forward to your weekend! Remember, stay positive and do not stress over anything with preparing for Christmas, everything will work out as perfect as it can. The ability to be with loved ones is all that really matters this time of year! Take care and much love y’all!

Love 2

Always, Alyssa

Beautiful Friday Morning!

Good Morning FridayHappy Friday Morning Y’all! I do not normally do posts in the morning, because I am normally at work. I am off work today partially to rest because of what appears to be a flare up, and partially because it is the day before my birthday! At first, I was planning to go spend the day with my mother to celebrate my birthday, but with all that is going on things needed to change some. With the undesired birthday present of pain and possible flare up, it is best for me to get as much rest as possible. So, I am staying home to rest today!

Considering tomorrow is my birthday and Sunday is my six-year wedding anniversary, I really want to feel up to pare to be able to enjoy those two days! As frustrating as it is, I do know that during this time rest is best. I am not very good at doing nothing and Hoperesting, but I am going to continue to give it my best shot! I did take two and a half days off from work so my body could heal, plus I have the weekend so hopefully by Monday, I will be as good as new! One can only hope that this will work!

I did not make my normal daily post last night because my husband and I went to see Jack Johnson in concert! It took a lot Music makes the painof effort for me to get up the strength to go, but I am really glad we did. It was a fantastic show and did not require too much standing or walking. We were able to park close because of the handicap parking and we were able to sit as much as we wanted. I sat down for the majority of this show, but it was fine! Jack Johnson has a very soothing voice and this was such a fantastic show! For us to be able to go to this show was thanks to my wonderful Father in Law! To me, music has a healing almost magical power!

Now, considering I did miss my daily post yesterday, I am planning to do another post later to make up for missed times! As y’all know, I wanted to do one post a day for at least a month! This might seem challenging when one deals with a lot of pain, but it is a huge stress reliever for me and I enjoy this! I have enjoyed all the connections I have made, which has resulted in great conversations! I am going to do my very best to try to rest today and maybe even takes a few naps! I will let you know later how and if this has helped what I am dealing with! I hope y’all have a good day today!! Take care!

Love 2

Always, Alyssa

Ready for change!

stop stress 2How do you not stress, when it is all you have ever done in your life? I think stress is just part of who I am. Today, I received a call saying someone scheduled a MRI for me. Wasn’t that nice of them? No one even bothered to call me to ask when a good time would be for me. Instead, I guess because it was a STAT MRI, they scheduled it on Saturday, which is my birthday! Not only did someone take it upon themselves to schedule this appointment, they scheduled it about an hour away from where I live. Why would anyone with any common sense do such a thing? These doctors and nurse practitioners keep saying I need to control my stress, but then make stupid assumptions about when I can make it to the MRI.  Of course I called the scheduling department and rescheduled the MRI closer to my  house and not on my birthday!

The nurse practitioner still keeps saying that this is a pseudo relapse, simply because there really are not any new symptoms. But, she has not listened to a thing I have said. Plus, it can still be a normal relapse without new symptoms one of the lesions that was dormant, could be active now. Of course I have had these issues with pain before, but now it is way more intense. There could be additional lesions that are causing increased pain. 

I had shared with the nurse that I think this is due to stress. So her response was, you need to stop stressing. Sounds so easy, right? The more I hear people tell me to control my stress, the more stressed I get! stress meterI did ask her today what else I can do to help these issues. She said that I should rest as much as possible and it would be a smart idea to stay out of work a few days to recuperate from these flare up like symptoms.  I am already off on Friday, so that would just mean missing tomorrow as well, which will not be a huge issue. We do have tickets to see Jack Johnson tomorrow evening, and I am pretty excited about this! If when I wake up tomorrow morning I am still dealing with this pain, I will stay home and rest so that I will feel okay to enjoy this show!

Time OutI really am frustrated with the healthcare system. It seems like you are not able to get straight answers, ever! All doctors want to do is prescribe something new, that will probably cause more issues. Who tell hell wants to be dealing with a pseudo flare up or a flare up right before their birthday and anniversary? If this was some kind of birthday present, how do I return or exchange it? I do not know of anyone that is alive that does not have some type of stress come into their lives at some point. How do you live life and not experience stress? Life dishes out stress at random times for a number of different reasons. If only there was a way to escape to some tropical island, without cell service and great weather, that would be my perfect escape!

I guess all I can do right now is rest, relax and just hope for the best situation possible. Those of you that have Multiple Sclerosis, know flare ups come and go. I have to believepostivethinking that none of this is going to be permanent and life can and will get back to normal. Life throws us curve balls and we just need to do what we can to keep moving forward. No one ever said life was easy, we all have struggles but how we handle these struggles determines how our future plays out. No matter how it appears on the outside, none of us are dealt an easy hand in life. We need to do our best to stay positive and avoid negative as much as humanly possible. 

I hope y’all have a good evening! Please leave a comment below and I will respond to you just as quickly as I can! I have enjoyed all the connections I have made with so many of you! I sincerely appreciate all of your kindness and support! Take care and stay as strong as possible!

Love 2

Always, Alyssa

Fatigue: Another symptom of MS or just part of life?

sleepyAnother weekend has come and gone by way too fast! Sunday comes up on us so quickly and it is time to prepare for yet another long work week. I did my best this weekend to relax and do what I was told when at my doctor’s office last week to help the Pseudo Relapse  come to an end. Unfortunately, I am still experiencing an incredible amount of pain. I guess it is going to take a little longer than one weekend to get back to normal. Even though I am still struggling, I am very hopeful that my new treatment plan will help get all my pain under control.

kitten_sleep_by_jaymilinaI got to thinking about something over the weekend. I have always been the type of person to get up early, even on the weekends when I can sleep in. I thought it was because all week-long I have to get up early for work so maybe my mind and body is just trained to always get up early. Who knows!? I have noticed no matter what day of the week it is, I do always feel much better earlier in the day and feel so fatigued in the afternoon. It seems that everyday I feel fatigue setting in around 1 or 2 pm. Of course Monday through Friday I do not get out of work until 5:00 pm, so the last few hours of my day are brutal. I never make any plans after work so that I am able to just go straight home and rest. Of course I was curious to find out if this was something to do with the Multiple Sclerosis or just my body chemistry. Come to find out after reading this article “Fatigue and Multiple Sclerosis”, I found that 75-95% of MS patients do experience a lot of fatigue.The article https://my.clevelandclinic.org/health/articles/fatigue-in-multiple-sclerosis  was very interesting to me. Please let me know if you find this at all helpful!

sleepy kittyI know fatigue doesn’t just affect those of us with MS and everyone has different reasons for it. But for those of you  that battle MS, how many of you experience fatigue on a daily basis? How do you combat this issue? I would love to hear anything that has maybe helped you in any way. It is obviously a little frustrating when I am at work and just want to close my eyes around lunch time. As always your comments are very appreciated. I love hearing from all of you and will respond to you as soon as I can. Your continued support is valuable to me as well! Being able to connect with you is so helpful to me as I hope it is helpful to you as well. I hope you have a great evening!

Hope for cure

 

Always, Alyssa

Pain update and feeling hopeful!!

hope 2Happy Friday Eve! As y’all know I have been battling increased pain for about two weeks now! As you probably know from your own experience, dealing with pain is extremely frustrating! I was terrified to tell my doctor about it because I was thinking it was a flare up. I finally shared my issues with my doctor and of course she wanted to see me so she could determine what we needed to do. I scheduled an appointment with her Nurse Practitioner (NP) because she was of course booked. 

I was of course nervous about the appointment because I was thinking worse case scenario. I had my husband come with me to my appointment yesterday and was actually pleasantly surprised that I was not having a relapse from the Multiple Sclerosis! The NP told me I was experiencing a Pseudo Relapse. In the 16 years I have battled MS, I have never heard of such a thing. The way she explained it to us made a lot of sense and made me feel so much better about my situation. Pseudo Relapses can occur because of infection, heat and or stress but will go away without having to deal with steroids. It is common for Pseudo Relapses to have all old symptoms from previous relapses to come back at the same time and for it to feel like you are having a typical flare up when in fact you aren’t. When you have a relapse from MS you experience new symptoms and everything I was dealing with I had been through before. I was very relived by her diagnosis and obviously feel better about the situation and I am hopeful that my pain will get better sooner than later. Im in the fight of my life

During this appointment I also told the NP that I had discontinued the Gilenya about a week and a half ago. I explained to her that I felt that I had been on Gilenya for too long and my body needed a break. She told me I of course need to have a plan to what I am going to switch to. I made the decision to switch to Tecfidera. She explained that Tecfidera isn’t as strong as Gilenya and might not be as effective so I need to be prepared. I am going to try this new medication in conjunction with managing my stress better with hopes it will work. I will not be starting Tecfidera for a few more weeks as I have to wait for insurance to approve it and for my blood count to stabilize. 

These past few weeks have been very difficult and extremely frustrating as I could not figure out why I was in so much pain and why it would not let up. I have been sharing this struggle with all of you and received some really great advice. I am so happy to share this great news with all of you that it doesn’t appear that my MS is progressing but remaining fairly stable. I have known that heat and stress can cause issues for MS but never did I know anything about Pseudo Relapse. You know I always end my posts with a question because I really enjoy and appreciate your feedback. Have any of you heard of Pseudo Relapses before now?f505582bc2e45648307fd6a35837f4b0--multiple-sclerosis-awareness-flip-flop

I will of course keep you all updated on how this issue improves as I do believe it will. Plus, I will be waiting for the insurance to approve the new medication and my blood work to stabilize and will keep you updated through this process. Y’all know it takes insurance a while to approve medications, especially the expensive medications needed for MS. Time will tell and I will stay positive and strong!

Hope for cure

 

Always, Alyssa

 

 

 

Still fighting pain, but holding onto hope!

hope 2Happy Monday Y’a’ll! I am still currently battling the pain I have been dealing with for about a week now. For some reason it isn’t letting up. I have been resting and trying to not dwell on it,  but it is still hanging around!  

So what I am dealing with is spasticity in my legs and I guess that is what is going on with my neck and shoulders. I have honestly dealt with leg pain since I was first diagnosed, but this just seems like so more. All doctors will say that heat is bad for MS patients but using a heating pad is all that alleviates my leg pain. I guess I am just unusual. Does a heating pad actually help any of y’a’ll that deal with MS pain?hope 1

I am wondering if it is possible that this is something to do with the weather. I always try to find a common denominator to when my pain seems to  be elevated. Do any of you believe that the weather, even when there isn’t a huge change, impacts MS? I of course already know extreme heat or cold can cause issues to worsen but the weather has been kind of the same here, hot and humid. Although today it is relatively humid and dreary.

As always I want to ask a question to all of you. Whether you battle MS, another chronic disease or  none of the above, what have you noticed that causes pain to elevate or even headaches to be more frequent? I always appreciate your comments and I do respond!

Always, AlyssaHope for cure