FAQ

Multiple Sclerosis inherently damages the Myelin sheath. I thought of it as a munching creature. Of course, we don’t want him to eat it, but that doesn’t mean our Myelin sheath is tasteless!

I like to make jokes with little nuances about the situation. Welcome to my page! 🙂

My name is Pirden, and I’ve been living with Multiple Sclerosis (MS) since 2013 🙂 I’m here to inform and sweetly share my experiences.

Check out the page I talked about my self: https://crunchymyelin.com/2023/12/about-me/

I’m not a doctor. I’m not a nutritionist. I don’t know more than your doctors. But, I’ve done plenty of research, had discussions, and gained a lot of insights. I’m here to compile and share them 🙂 Additionally, I will try to keep the page updated by following the latest MS research. Don’t hesitate to email me about any topic; I’ll do my best to guide you whenever I can! Happy reading.

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Multiple Sclerosis (MS) is a disease of the protective sheath (myelin sheath) around the nerve wires that carry messages in the brain and spinal cord. It occurs as a result of physical damage to the myelin layer of the spinal cord, which provides information communication between the central nervous system and the organs. Hardened tissues (sclerosis) occur in areas where the sheath is damaged. This hardened area is called plaque. These plaques can form in many places within the nervous system and block the transmission of messages along the nerves.

The first symptoms of the disease appear within a few days; It progresses with exacerbations and remissions. While it shows a complete recovery in the initial stages, a small number of patients may experience worsening without improvement from the beginning.

MS symptoms can vary greatly from patient to patient in terms of severity and course. In some patients, different disease symptoms occur one after the other, and then full or partial recovery occurs. Symptoms vary depending on the affected nervous system area.

These include weakness, tingling, numbness, lack of sensation, balance disorder, double vision, decreased vision, speech impairment, tremors, stiffness in the arms and legs, weakness, urinary incontinence or inability to urinate, and lack of sexual potency in men. One or more of the described symptoms may be observed together.

The most important data for diagnosis are obtained from your disease history and examination findings. The diagnosis of MS should be made by a neurologist, preferably a neurologist experienced in MS. Neurologists can easily diagnose most MS patients. However, the diagnosis is doubtful in some of the patients, and even the most experienced centers in the world experience diagnostic problems. Because there are many diseases that can mimic MS, especially in the early stages. Laboratory findings such as MRI and cerebrospinal fluid examination can also give similar findings in many diseases other than MS. Since no test alone will be sufficient for the diagnosis of MS, various tests and methods are needed. As with many diseases, diagnosis is made as a result of neurological history, examination findings and tests.

The doctor listens to your health information in the form of questions and answers to determine whether symptoms of MS disease have been seen in the past.
A detailed neurological examination is performed.
Magnetic Resonance Imaging (MRI) investigates the current status of plaques formed in MS disease. MRI is the imaging method with the highest soft tissue sensitivity.
Tests called “evoked potentials” that measure the response of the central nervous system to a certain stimulus.

The issue of diet in MS patients is more exaggerated than it deserves. It is important to know this about diet: “The best diet for people with MS is the diet that is right for normal healthy individuals.” In other words, what is true for healthy individuals is also true for MS patients. This diet; It is a balanced diet, rich in fiber, vegetables and fruits, and low in fat. Emphasis should be placed on natural foods without additives.

Fish is a good food for both general health and MS in many ways. When choosing fish, you can choose those rich in omega fatty acids (especially omega 3, 6 and 9). Most important ones to use is; all kinds of salmon, white tuna, trout and anchovies. These fish are also high in vitamin D. There is data suggesting that vitamin D may have a place in the treatment of MS, and research on this subject is still ongoing. You can also get protein from dried beans, grains, nuts and seeds. You can choose to use liquid oils when consuming oil.

Fresh vegetables and fruits should be preferred, fried foods and foods containing additives should be avoided.

Many people know MS as an incurable, disabling disease. Especially on the internet, in newspapers, and even on national TV channels, MS is promoted as a disease that has no cure and causes disability in all patients. However, MS has now become a disease that can be well controlled. Some of the patients whose disease started earlier and are not treated early are dependent on crutches, wheelchairs or even beds. Once MS causes disability, it is not possible to restore the disability today. However, the future is brighter for those with new MS. With early and appropriate treatment, most MS patients will now be able to continue their lives without significant restrictions.

Just as many diseases such as blood pressure, diabetes and thyroid diseases cannot be completely eliminated but can be controlled, the situation is similar for MS.

Betaferon, Rebif, Avonex and Copaxone are injection type and the treatment is long-term. Although these drugs are not disease-curing agents, they are used in appropriate patients because they are partially effective in the course of the disease.

Gilenya, Aubagio and Tecfidera are available as oral pills. Tysabri is administered intravenously once a month, and Lemtrada is administered intravenously for 5 days once a year. There will be more alternatives with new treatment methods that are still in the research phase and will come to market in the coming years.

With early and appropriate treatment, disability due to MS will decrease significantly.

In addition, for more severe types of MS, a drug called Natalizumab (Tysabri) is used, which is administered intravenously once a month.

1- Benign Multiple Sclerosis (Benign)
In this type, there are mild attacks and the attacks are followed by full recovery. It does not accumulate over time and does not cause permanent damage.

2-Relapsing and remitting Multiple Sclerosis (Relapsing-remitting)
This type of MS is the most common type of MS. In 75-80 percent of MS patients, the disease progresses in a relapsing and remitting pattern. In this type of MS disease, patients often experience MS attacks for a long period without realizing it, and they can resolve spontaneously. In other words, in this type of MS, the disease progresses as ATTACK – RECOVERY – ATTACK – RECOVERY. The improvements here are almost complete at first.

3-Secondary Progressive Multiple Sclerosis
This type of MS, which we call secondary progressive, progresses in the form of ATTACK – RECOVERY – ATTACK – RECOVERY. The patient has an attack but cannot recover from this attack. For example, the patient experiences imbalance and cannot recover again and remains unstable or has weakness in the leg, but the patient cannot recover from this disease.

4- Primary Progressive Multiple Sclerosis (Primary Progressive)
It is the most dangerous type of primary progressive MS disease. In this type of patients, they experience a single attack and there is no recovery from these attacks. The patient’s condition is gradually deteriorating. It is a very rare type; It occurs at a rate of 5 percent.

5-Marburg Type Multiple Sclerosis
This is the most dangerous type of MS. In Marburg type MS, patients have an attack and we lose the patient with this attack. This is a very rare type of MS.

Here at crunchymyelin.com, I am trying to compile published research and articles about MS. If there are pages you recommend to me, please contact me and I will add them to my follow list. The Awareness and the Research categories have the information that I find useful online, and I share the page where I get this information.
Please consult your doctor or healthcare provider before making any changes to your health.

Multiple Sclerosis is not a fatal disease. It requires some adaptiveness in your life, but it is not fatal or contagious.

As a person who has been living with MS since 2013, I can say that you generally live your life with small adaptive moves. You live your life and make your plans monthly or, in some cases, yearly, between doctor appointments. Fulfill your dreams, this is not something you should hold yourself back. You can do your dream job, get married, be the president, or even you can be an astronaut! The only person who holds you back is always “you.”

You can love, you can do anything you want to do. I am not an expert to tell you, “You should talk with your loved one about your condition,” but in my experiences since 2010 (I was married that year), secrets are a no-no. No one will gain some points when you hold secrets from each other in relationships. And yes, sometimes you will need your loved one more than anyone else because of multiple sclerosis. But these times make you stronger together.

I wanted to say honestly that I won’t tell you from experience because I didn’t give birth. Research says that Multiple sclerosis is not genetic and is not passed from mother to child. Since it is not contagious anyway, you cannot infect your husband.

You can find more detailed information here in MS society.org.uk page.