Real MS Stories, From REAL Patients

Lindsey Schwier- 29

18 when she first started to notice something wasn’t right with her body. Being so young, Lindsey shrugged it off as lack of sleep. She suffered for quite a while with neck pain and episodes that she called “panic attacks”. After she had her daughter at 23, Lindsey woke up one morning to extreme eye pain in her right eye. A few days later, she went to the ER after she lost all vision in that eye, and she felt as though her brain was scrambled. She was scared to death as she could only think of one thing- a stoke. All tests came back negative, and the doctors told her to see an eye doctor. When she saw the eye doctor, she examined Lindsey’s eye and diagnosed her with optic neuritis– the inflammation on the optic nerve. Lindsey was in shock and terrified. That was the first time anyone asked Lindsey if she had also been feeling numb or tingly. Lindsey told the doctor her symptoms and she ultimately dismissed it as a sinus infection.

At the age of 28 after Lindsey’s son was born, her eye flared up and it didn’t go away. A lot of times her symptoms would flare up in the heat and go away after some time. This time Lindsey saw an eye specialist who found her symptoms to be troubling. The eye specialist referred her to a neurologist and Lindsey had her first MRI. Lindsey was finally getting some answers. The MRI revealed horrific results- 6 lesions on Lindsey’s brain and 2 on her cervical spinal cord. Lindsey said she was heartbroken. The term MS had been lingering in her head for years now she was being told that was in fact what she had.

Patient 2- 16

Was 11 when she had her first symptoms, she had bad migraines where she would lose vision in the left side of both eyes. She would get sharp stabbing pains in the back of her head, she went to her doctor where she was sent straight to the hospital, where they told her to take migraine medication, and sent the patient on her way. So around a year later the patient then went back after the head pain had been worse, at school. She was rushed to the hospital and had an MRI, but the doctor dismissed it again until she was 14. Until her whole left body became progressively numb and she became concerned. She told her parents and she was rushed for MRI scans, where they found 10 lesions on her brain, 1 around her neck and 1 on her lower back. The doctors then straight away said I’m sorry they allowed it to get this bad when comparing with her previous scans and that they would do some blood tests but it is Multiple Sclerosis. The patient was then transferred to a more senior neurologist and was there was nothing they could do for the symptoms she had because they are now permanent lesions. The patient has now started a DMT and is hoping to make her way up to a more effective ones to hopefully halt progression as she has already had another relapse in November and shes only now 16. The patient is now left with permeant at the moment left side of the body altered sensation, back pain, neck pain, and migraines.

Matthew Embry-29

Has had MS for 20 years, he has traveled the world trying to find answers about MS. Matt does not take DMTs, he had the CCSVI (Chronic cerebral-spinal venous insufficiency) procedure. He keeps his MS in control by taking the right amounts of vitamin D, Omega 3 essential fatty acids, Calcium, Magnesium, Probiotics, Vitamin A, Vitamin B Complex, Vitamin B12, Vitamin C, Vitamin E (Natural), Zinc, Copper, Selenium, Manganese, Iodine. Also, a strict diet with no dairy, you can look that up at mshope.com. Matt is currently symptom free.

Want people to know your story? contact me at Shaylprince@outlook.com and I will gladly tell it.

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Mason Jar Canisters

  1. Soap Dispensers
  2. Toothbrush Holders 
  3. Canisters

You may get any color that you wish, just shoot me an email at shaylprince@outlook.com and let me know what color because right now my WordPress email is not working. 

 

Plus, you can get just one or you can get a set of 4 or whatever you want just email me and we can go from there if you want anything different than one or a set of four.

Thank you

Shayna Prince

 
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What do you guys want?

I want to know what you guys want. Whether it be fitness, recipes, more information about MS.

I WANT your opinion! So please leave comments so I know what to write more, It would be greatly appreciated. If you want something I don’t have I’ll see what I can do. I’d also love to hear stories from other MS patients so please don’t hesitate.

Best wishes, Thank you

Shayna Prince

Disease Modifying Therapies

As we have talked about everyone MS is not the same. However, DMTs could be a helpful component in your MS care. Keep in mind, DMTs don’t treat symptoms of MS, but they may reduce the number of relapses and slow the progression of physical disability.

Even if you may not be experiencing MS symptoms regularly, your MS may still be progressing. It’s important to work with your doctor to discuss a treatment option that meets your need sooner than later….

Explore Disease Modifying Treatments for MS 
  • Alemtuzumab (Lemtrada)
  • Avonex (Interferon beta-1a)
  • Betaferon (Interferon beta-1b)
  • Cladribine (Mavenclad)
  • Dimethyl fumarate (Tecfidera)
  • Extavia (beta interferon-1b) 
  • Fingolimod (Gilenya)
  • Glatiramer acetate (Copaxone)
  • HSCT
  • Natalizumab (Tysabri)
  • Ocrelizumab (Ocrevus)
  • Plegridy (peginterferon beta-1a)
  • Rebif (beta interferon-1a)
  • Siponimon (Mayzen)
  • Teriflunomide (Aubagio)
To learn more click on the ribbon…
Contact Me!
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COVID risks

MS and the Pandemic

 

Have you?

Have you ever asked yourself what kind of risk you are in? Especially if you are taking disease modifying therapies? (DMTs)

Experience In MS patients with COVID-19

There was a case study done where MS patients taking (DMTs), by far the most cases were described when taking anti-CD20 treatment (n=317). The mortality rate of all MS patients was 4% and a further 3% required invasive or non-invasive ventilation. When looking at the severe and fatal cases, it is particularly noticeable that patients without DMTs, with previous cardiovascular diseases, or with a severe degree disability are at risk. Immunosuppressive therapy itself did not appear to be a substantial risk factor.  

Anxiety

Studies show that the COVID-19 pandemic is having an impact on psychological health of patients with relapsing-remitting MS (RRMS) The researchers found that the main concerns among patients were that someone they know could be infected with COVID-19 or could die from the infection, as well as the lack of specific treatment options. Regarding RRMS status, the main concerns were that their disease would be worse if they contract COVID-19, that they might experience some difficulties in drug availability, and that they could not go to the hospital as usual.  

Treating Disease With Virtual Reality

Today, close to 1 million adults in the united states have been diagnosed with MS. During the COVID-19 pandemic patients have found themselves doing Virtual Reality for doctors appointments. Virtual reality and augmented reality (VR/AR), which were once thought of as simple gamification, have been adopted be medical professionals around the world. Patients can remotely engage with clinicians, where they can be guided with a treatment plan that is personalized.
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Healthier Broccoli Chicken Casserole

Ali’s Broccoli Chicken Casserole

  This casserole is a remake of your childhood favorite just healthier and tastier. With your choice of pasta, tender chicken, broccoli and the most delicious creamy cheddar mushroom sauce. I’m a Pinterest person so I stole this recipe but man is it AMAZING! Like Ali says for those of you crave a good throwback chicken casserole every now and then ( Like Me) You’re going to love this recipe. Meet Ali’s 100% from-scratch, lightened-up, still-ultra-creamy-and-cheese, comforting chicken and broccoli casserole recipe.       It’s made with all the classic components from the good ‘ol days. Except it an easy homemade creamy mushroom sauce. Made with lots of fresh mushrooms and zesty seasonings to ensure that this casserole is anything but bland.   Lets Make Some Yummy Food!    

CHICKEN BROCCOLI CASSEROLE INGREDIENTS

Alright! Before we get to the recipe, we need to talk about the shopping list. To make our broccoli chicken, you will need.
  • Pasta: Seriously any type that you love best will work here – I love whole wheat but you can go with any – traditional (semolina), whole-wheat, gluten-free, egg, or any other kind of alternative grain pastas that you prefer.
  • Broccoli: You can either use fresh broccoli (about 1 large head, cut into florets) or frozen broccoli (1 pound).
  • Mushrooms: Any kind you like best will work.
  • Creamy Sauce Stuff: Butter (or Olive Oil), Onion, Garlic, flour, stock (chicken or veggie), milk (any kind) Dijon, salt and pepper.
  • Sharp Cheddar Cheese: I recommend buying good-quality block cheese, I like Velveeta. Ali recommends buying good-quality aged sharp cheddar, and shredding it yourself.
  • Chicken: Any cooked chicken will work. You can use my baked chicken recipe, you can sauté two breasts in olive oil in a skillet until through or for a short cut, feel free to use a rotisserie chicken.
 

HOW TO MAKE THIS CASSEROLE

    1. Cook the pasta and broccoli: Cook the pasta in a large pot of boiling water (don’t forget a generously salt the water!) until it is AL DENTE. But-plot twist!-toss the broccoli florets into the water about 1 minute before the pasta is done cooking to give it a quick cook too.  Drain Both!
    2. Make the mushroom sauce: Meanwhile, we’ll work on the sauce. Sauté the onion, followed by the mushrooms and garlic in butter (or oil) until softened. Stir in some flour and let it cook for 1 minute (this will help thicken the sauce), Then add in the stock, milk, Dijon, salt and pepper, and cook until the sauce reaches a simmer. Stir in half of the shredded cheese, taste. and adjust any seasonings as needed.
    3. Put everything together. In a large 9 x 13 – inch baking dish, give everything a good toss (like you mean it) – the cooked pasta, broccoli, mushroom sauce and chicken – until combined.
    4. Bake. Bake uncovered for 15 minutes. Then remove pan from the oven, sprinkle the remaining cheddar cheese evenly on top on the casserole, and bake for 10 more minutes or until the cheese is nice and melted.
    5. ENJOY! Serve nice and warm, garnished with extra black pepper and/or fresh herbs, if you desire.
     

INGREDIENTS

  • 8 ounces uncooked pasta (any kind will work)
  • 1 large head of broccoli*. cut into bite- sized florets (about 1 pound of florets)
  • 2 tablespoons butter or olive oil
  • 1 small white onion, thinly sliced
  • 8 ounces mushrooms (your choice) Ali uses baby bella (cremini), thinly sliced
  • 4 cloves garlic. minced
  • 3 tablespoons flour
  • 1 cup chicken or vegetable stock
  • 1 1/2 cups milk
  • 1 teaspoon Dijon mustard
  • 1/2 teaspoon freshly-cracked black pepper
  • 2 cups (8 ounces) shredded sharp cheddar cheese, divided
  • 2 cups diced (or shredded) cooked chicken
       

INSTRUCTIONS

  1. Heat oven to 400 degrees.
  2. Cook pasta in a large stockpot of generously-salted boiling water until it is AL DENTE. However, about 1 minute before the pasta is done, add the broccoli to the boiling pasta water and stir until combined. Drain both the pasta and broccoli, and set aside.
  3. Meanwhile, heat the butter (or oil) in a large sauté pan over medium-high heat. Add onion and sauté for 5 more minutes, stirring occasionally, or until the mushrooms are cooked through.
  4. Sprinkle the flour evenly over the onion mixture and stir until combined. cook for 1 minute, stirring occasionally. Add in the stock, and stir everything together until most of the clumps are gone. Add in the milk, Dijon, salt and pepper and stir until combined. Continue cooking the sauce until it reaches a simmer. Then remove from heat and stir in 1 cup of the shredded cheese until it is combined. Taste and season how you like it as need with salt and pepper.
  5. In a large 9 x 13 – inch baking dish, combine the cooked pasta, broccoli, mushroom sauce and chicken. Toss until combined. Smooth the casserole out into the baking pan evenly.
  6. Bake uncovered for 15 minutes. Then remove pan from the oven, sprinkle the remaining cheddar cheese evenly on top, and bake for another 10 minutes until cheese is nice and melted the way you want it.
  7. Serve warm, garnish with extra black pepper and/or fresh herbs whatever you wish.
   
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COVID-19 vaccine

MS patients and COVID vaccine

HOW WILL THE VACCINE AFFECT PEOPLE WITH MS? According to Vanderbilt Multiple Sclerosis clinic, both Pfizer and Moderna vaccines are safe as they are non-live vaccines, meaning you cannot get COVID from the vaccines. However, the Pfizer vaccines have shown more allergic reactions during the trials, so patients with many allergies or a history of allergic reactions to vaccines are being cautioned. If that’s your case it’s recommended waiting on Moderna’s vaccines.   WHAT IF YOU’RE IMMUNOSUPPRESSED? Now with immunosuppressed patients, there is a question on how effective the vaccine will be as the immune system cannot mount as strong of a response and as high level of immunity. The original studies were done on “healthy adults” without other illnesses or medications needed. So if you want to get the vaccine make sure your MS medicine does not cause immunosuppression. ( EX. Tysabri does not)   ARE YOU GOING TO GET THE VACCINE? I want comments! Biden is going to get the vaccine we know Trump probably isn’t. What is your decision? My MS specialist Dr. Pawate from Vanderbilt MS clinic told me it wasn’t a bad idea for me to get it. I am in health care and I myself have multiple sclerosis. So I went and received the Pfizer the 30th of January my only symptoms were, I was very sleepy for about two days, and my arm hurt for about the same amount of time. Now I’ve heard some people have had no symptoms and some have I guess it’s just your immune system. I would recommend asking your doctor before getting the vaccine.    

Symptoms

Most common symptoms include:
  • Dry cough
  • Tiredness
  • Fever
Less Common symptoms:
  • Aches and pains
  • Sore throat
  • Diarrhea
  • Conjunctivitis
  • Headache
  • Loss of taste or smell
  • A rash on skin, or discoloration of fingers or toes
Serious symptoms:
  • Difficulty breathing or shortness of breath
  • Chest pain or pressure
  • Loss or speech or movement
  On average it takes up to 5-6 days from when someone is infected with virus for symptoms to show, however it can take up to 14 days.    
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What is Multiple sclerosis (MS)? What are the symptoms?

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What happens in MS? Is everyone’s MS the same?

Your immune system is your body’s natural defense system which helps your body fight against infections.

Your central nervous system contains nerve cells that process information and communicate messages to and from different areas of your body triggering a response, it controls EVERYTHING that goes on in your body,

If you have MS you’ve probably heard the word “myelin sheath” well that’s the coating that covers your nerve ending and well us guys with MS are losing it! That’s what’s causes our lesions in our brains and spinal cords.

When our “myelin sheath” is damaged or degenerated, the process of nerve signals get hampered or delayed,

You all know we used to be fast at something but now you will realize someone in the corner whispering ” That person is just too slow” or some snide remark. 

After an attack, your body is able to repair itself to some extent, However in the earlier stages of MS, your body has the ability to replace the damaged myelin (called demyelination), although it tends to be thinner than unaffected myelin so the messages may not travel as fast as they did before. Your brain also has the ability to reroute messages to avoid an area of damage so that messages can still get through – this is known as plasticity.

MS is thought to be an autoimmune and neurodegenerative condition. Autoimmune because your body is attacking healthy cells and neurodegenerative because the loss of myelin can leave nerves exposed and more vulnerable to long-lasting damage.

 

Is everyone’s MS the same?

No, everyone’s MS is different. MS is divided into three main types:

Most Neuros like to use just two groups of MS relapsing – remitting and primary – progressive MS 

Sometimes there can be some doubt as to which type you have, especially when you’re first diagnosed.

If you do not know what kind of MS you have you can always ask your Neuro or your MS specialist 

If you need any help or information, Please put your contact down.

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Easy Winter warm breakfast

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Porridge (I used Carmen’s all natural Honey, vanilla and cinnamon made with water)
1 banana sliced
Handful of fresh blueberries (these Driscoll ones were huge)
Sprinkle of natural sliced almonds
Sprinkle chia seeds
Drizzle of natural honey 🍯

Before eating this I squeeze half a lemon into warm-hot water and take a probiotic, vitamin D and a vitamin B tablet. The honey will feed the probiotics and the good fat in the almonds help your body to absorb the vitamin D.

At the moment these are the only vitamins I take. I try to keep life simple and use good food.

Here’s to your good health #beatms

[blockquote text=”Eating a diet very low in saturated fat — not to exceed 15 grams per day — can help manage the symptoms of multiple sclerosis (MS). In addition to limiting saturated fats, the eat whole grains, fruits, vegetables, and very lean proteins.” show_quote_icon=”yes” width=”95″ line_height=”32″ quote_icon_color=”#ffffff”]
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