About Multiple Sclerosis-Living with MS pain

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By puter_dr

Multiple Sclerosis

Multiple Sclerosis or MS is a debilitating disease that happens to affect more than one member of my family. In learning more, I figured I would do a hub to maybe educate others. I am not a medical doctor, so nothing in this hub should be taken as medical advice.

Causes of Multiple Sclerosis

No one knows what causes Multiple Sclerosis. There is no cure. However, medical researchers know that Multiple Sclerosis is an autoimmune disease. Something causes the body’s immune system to go into over drive and attack healthy tissues in the body. In the case of MS, the myelin around the nerve cells is attacked.

There are several theories as to what causes the immune system to rev itself up. Many of these theories are controversial and not supported by standard, allopathic medicine.Many people in alternative medicine believe MS is caused by toxins in our food and environment. Mercury fillings and food additives such as MSG are at the top of that list. There are people who have had reduction in symptoms by having fillings removed or changing their diet to eliminate all foods that contain MSG.

Other people think MS is caused by an over growth of bacteria in the body. The theory is that the body’s immune system works too hard to fight off these bacteria and it starts attacking healthy tissue, as well. There is some anecdotal evidence that this may be the case in some people.

Some people think MS is caused by being exposed to the EPV virus in childhood. This is the virus that causes mononucleosis, and Epstein Barr Syndrome. It is thought the EPV virus could stay dormant in the system. Those who support this theory say that the EPV virus replicates itself similar to myelin, and the body’s immune system can not tell the difference.

Still others believe lack of nutrition causes the immune system to malfunction and attack healthy tissue in the body. These people maintain that over the centuries the minerals have been leeched out of the soil we use to grow food, and that genetic engineering of food products has reduced or made vitamins and minerals biochemically unavailable to our bodies.

This group advocates organic, raw food and whole food supplements. What ever your theory about the causes of multiple sclerosis, it is important that both medical researchers and the general population continue to research the causes of the disease so that we can find a cure or and effective preventive plan.

How is Multiple Sclerosis Diagnosed

For the majority of people, getting that final diagnosis of Multiple Sclerosis is both a relief and a nightmare.

The diagnosis comes as a relief because, oftentimes, the person has experienced odd, seemingly disconnected symptoms for several years before it finally has a name. Many are confused and scared by the strange numbness, weakness or other neurological symptoms, which seem to come and go at random. For many final diagnosis is reassurance for themselves they are not losing their minds and proof to their family they are not faking illness.

There is no definitive test for MS. A diagnosis of Multiple Sclerosis is made only after eliminating all other possibilities and explanations for the patient’s symptoms.

There is, however a uniform criteria which must be met for a diagnosis of “definite MS.” Even if the MRI, lumbar puncture and V.E.P all suggest MS, this criteria must be met before the final diagnosis can be made.

That requirement is as follows, ‘Two different areas of the central nervous system are affected, and that these effects have been experienced on at least two separate occasions of at least one month apart and that the person is within the normal age range for the onset of MS’

At the first visit with your neurologist, he/she will take a complete medical history and will ask you to describe, in detail, the physical problems. It is important to tell everything, no matter how insignificant it may seem. Symptoms the patient has gotten used to ignoring, such as fleeting pain and restless legs are important.

The neurologist will then do a full neuro exam. He/she will test reflexes, check eyes, balance and coordination, as well as check for muscle weakness in the extremities and changes in the eyes.

After that is completed, most neurologists will order an MRI of the brain and spine, and a visual evoked potential. Some doctors will order a lumbar puncture at this time, but others will wait for the MRI to come back.

Managing pain in multiple sclerosis

When you think about multiple sclerosis symptoms, pain isn’t the first thing that comes to mind. From the outside you can’t see it, those who know the person may not even realize the amount of pain they experience But, it’s there.

The pain associated with multiple sclerosis comes in many forms. Stabbing pains, muscle spasms, pins and needles, or little twinges that seemed to come from nowhere are all common. They are all caused by the same thing -nerve damage.

Pain associated with multiple sclerosis is classified in two types, acute pain and chronic pain. The acute pain of multiple sclerosis is sharp and brief. It seems to come and go randomly.

Trigeminal Neuralgia - this is a stabbing pain in the face. It may feel like someone stabbing you in the face with a needle. Many people say that it sometimes feels like a toothache however, it is caused by damage to the trigeminal nerve. Most of the time, this type of pain can be treated successfully with medications such as carbamazepine or phenytoin.

Lhermitte’s Sign is a very common symptom in multiple sclerosis. When I the person ends their head forward there is a stabbing feeling similar to being shocked with an electrical wire. Anticonvulsant medications may be prescribed to prevent this sensation, or the person may choose to wear a soft collar to keep them from bending the neck forward.

For burning or aching your doctor may prescribe and anticonvulsant medication called gabapentin (Neurontin) or an antidepressant medication called amitriptyline (Elavil). Both of these medications modify the way the central nervous system reacts to pain. When a compression stocking or glove might help by converting the sensation to pay into a pressure. Placing a warm compress on the area might help convert this pain sensation to warmth

Depression caused by multiple sclerosis

Depression associated with multiple sclerosis can be a double edged sword. The effects of multiple sclerosis can cause depression if specific parts of the brain or nervous system are affected. At the same time, the challenges and obstacles that come with having MS can also bring on depression, especially if the person finds it difficult to do things they've always done before.

There are many prescription medications available to treat depression. Some of the most popular and well-known are Zoloft, Prozac and Elavil. Take the time to discuss their use with your doctor.

There are also several very effective herbal remedies for depression. Chamomile, Kava Kava and St. John's Wort has all proven effective in treating depression in many people. Before using any herb is important to discuss it with your doctor. Some herbal preparations can interact with standard multiple sclerosis treatments.

Regardless of how busy you are, be sure to set time aside to do something you enjoy every day. And, even though you feel bad, you should spend time with family and friends everyday. Isolating yourself from those you care about will just make you feel worse.

It is also important to get out of the house and spend time in the sunlight. Many people experience depression and they do not receive enough sunlight, and this is called seasonal affective disorder, and occurs mostly in the winter but can happen anytime.

Anyone will get depressed if they feel they do not have a purpose. Regardless of your level of disability, find something that you can do that gives you a sense of purpose; help a neighbor or a family member or consider volunteering.

Don't discount the value of daily exercise in battling depression. Exercise releases endorphins, which help elevate your mood naturally.

Remember also, that all the Interferon beta medications used to treat MS have the side effect of causing depression. If you are experiencing depression and taking these medications you should call your doctor right away.

The matter what its cause, depression should be taken seriously.

Copaxone

There is no cure for Multiple Sclerosis. There are several medications thought to slow the progression of the disease. In some people, these medications can reduce the frequency and severity of flare-ups, and may help reduce the number of brain and spinal cord lesions. These medications are fairly new, so it is unknown if they help reduce the extent of disability from MS

One of these medications is Copaxone. This injectable medication is used to treat Relapsing-Remitting MS. It has no effect on the three other types of Multiple Sclerosis.

Researchers are not completely sure how Copaxone works to slow MS progression. It is believed that the drug prevents damage causing cells from forming, and at the same time stimulating the beneficial cells to help reduce the damage in the areas with lesions.

Those who choose Copaxone therapy for MS give themselves a subcutaneous injection (shot under the skin) every day. The medication is dispensed in pre-filled syringes. Measuring is not necessary. Patients using this therapy will be taught how to give injections and for most people the entire procedure takes less than one minute.

As with any medication, there are side effects associated with Copaxone. The most common side effects are swelling, redness, pain, itching or a lump at the injection site. Some people experience a break down of the fatty tissue in the area they take injections.

Just as common are general body reactions like chest pain, weakness, nausea, joint pain, anxiety, muscle stiffness, and feeling flushed. According to the makers of Copaxone, these effects are mild and do not usually require medical treatment.

Less common, but more severe side effects include hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, severe injection site pain and general painful or uncomfortable changes in your overall health. Patients experiencing the above side effects should stop taking injections and call their doctor immediately.

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Avonex

The Multiple Sclerosis medication, Avonex, has been available to patients since 1998. Today, Avonex is the most widely prescribed MS treatment in both the United States and world- wide. It is used exclusively to treat the relapsing forms of Multiple Sclerosis.

Avonex works to reduce the frequency and severity of Multiple Sclerosis relapse and, can slow the progression of some types of MS disability. It is one of the Interferon beta medications approved for the treatment of MS.

Avonex is given as an intramuscular injection, this means is a shot given into a large muscle, similar to inoculations and insulin. It is taken once a week. Avonex is dispensed either in pre-filled syringes or as a powder, which the patient must mix immediately before injection.

Like any medication, Avonex has side effects. The most serious side effects are depression and suicidal thoughts, and severe liver damage.

People taking Avnonex are warned to be aware of their moods and tell a friend or family member if they become unusually sad. It is also suggested that those taking Avonex have blood drawn regularly to test liver function, and watch for yellowing of eyes and skin, or easy bruising. If any of these occur, patients are instructed to stop taking the injections and call their doctor right away.

Possible sever allergic reactions to Avonex include heart problems, seizures, changes in thyroid function, and a drop in white or red blood cell counts.

The most common side effects are fever, chills, muscle aches, extreme fatigue, and sweating. People who take Avonex injections describe these side effects as similar to having the flu(influenza virus). Most of the time, side effects decrease with long term use.

It is suggested that those who experience side effects take their injections at night so that they sleep through the worst of the reaction.

Everyone with Multiple Sclerosis must make an informed decision regarding treatment. It is important to educate yourself about all the treatments options and decide what is right for you.

Betaseron

The third of the Interferon beta medications is called Betaseron. It is used to treat the remitting types and secondary progressive type of Multiple Sclerosis.

While Betaseron is an Interferon beta drug, it has a different classification than Avonox and Rebif. Betaseron works differently that the other two, as well. This medication blocks T-cells from attacking myelin and reduces the amount of a protein called cytokines. Cytokines activates the immune system, which in people in MS can cause a flare up.

This medication is administered through a subcutaneous injection every other day. The typical dosage is 250 mcg per injection.

Betaseron will be dispensed by the pharmacy in three parts, a pre-filled diluting syringe, a vial adapter with needle attached and a vial of powdered medication. You will use one of these three part sets for each injection. This means Betaseron does not need to be refrigerated, and easy to take along with you when you travel.

As with all current medications for Multiple Sclerosis, Betaseron has serious side effects, and the potential to cause liver failure.

Depression is one of the most common side effects of Betaseron. Those using this medication should talk with their doctor about any signs of depression or thoughts of suicide. If you, or a family member, caregiver or friend notices depression, you should notify your doctor right away.

Some people have severe allergic reactions to Betaseron. Anaphylaxis is one of the known allergic reactions, if you notice difficulty breathing or swallowing call for emergency medical assistance immediately. Other allergic reactions include swelling, hives, and swelling of the mouth and tongue.

As with any injected medication, injection site irritation is always possible

Betaseron is given in graduated dosing. Patients start with a small dose and, over time, work up to the full dose. This increasing dosing schedule helps to reduce the side effects of muscle pain, fever, fatigue, and chills that are common with Interferon beta drugs. While these flu like side effects do still occur with Betaseron, their frequency is greatly reduced.

Deciding which, if any, disease altering medication to use is an important step in managing and learning to live with your disease. Research medication options completely and discuss with your doctor before making your choice.

Giving yourself or family member an injection

Giving yourself or a family member an injection can be scary. Most people don’t like shots and the idea of giving one can be a major stressor. However, for many people with multiple sclerosis, weekly or even daily injections are a way of life.

People with MS routinely give inject their medications into a muscle, IM injections, or just under the skin. These are called subcutaneous injections. (SQ)

It is important to know which type of injection you are to use when taking your injectable multiple sclerosis therapy.

Your neurologist, doctor or MS nurse will instruct you in the correct way to take your shots and you will be given plenty of time to practice. If you are unsure of the correct procedure for giving your shots, ask. It is your health practitioners job to help you become comfortable administering your own injections.

Whichever type of injectable medication you take be sure to store it as the manufacturer suggests. Refrigerated medications should be allowed to sit on a counter for at least an hour to warm to room temperature.

Gather all your supplies before starting and do not let anything distract you while you are preparing or administering your shot.

Most MS medications suggest applying ice to the intended injection site before hand to lessen pain and help reduce reactions.

To reduce the likelihood of injection site reactions, it is very important to rotate shot locations. You should never inject in the same area twice in a row, and if possible never in the same month.

IM injections are given in the large muscles of the thigh, hip, upper arm or buttocks. SQ injections can be given just about anywhere, but remember to alternate injection sites.

After giving the injection, massage the area gently for several minutes and then apply ice.

Benefits of assist dogs

The majority of people with multiple sclerosis never develop total disability. However, almost everyone with MS develops some type of disability. On days you are dizzy, off balance or in pain, or experiencing other symptoms, you need a little help.

An assistance dog may be of great help in these cases. Most people equate assist animals with seeing eye dogs. But, it is possible train a dog to help with physical problems, as well.

A dog can be taught to pick up something off the floor, retrieve the telephone, or even a person. For those with balance issues, a larger dog can be taught to let the person lean on them. The dog can then help guide their person.

Around the house, an assist dog may turn on lights, carry a plate, get an object or family member, or help their person get dressed. Some dogs can even be taught to help pull a wheelchair.

In public, a physical assist dog can get something from a shelf, hold keys or other objects or help their person maneuver through a crowded store. In addition, an assist dog adds an extra measure of protection against violent crime for a person who is more vulnerable.

Many good dog-training agencies work to train physical assist dogs. Several places provide curriculum and guidance to help you train your own dog.

It may be beneficial to have an experienced trainer do the initial training work, but, since needs may change, the person with MS should also learn the best way to teach their dog new tasks.

Remember, your dog must regularly practice the things it has learned so he/she does not forget what is expected.

A good assist dog is large enough to physically complete the tasks you want to teach and calm enough to accompany you anywhere.

Herbal supplements used to treat multiple sclerosis

Although not recognized in standard allopathic medicine, the use of herbal supplements can be very useful in treating MS.

Fish oil is a natural anti-inflammatory. In addition to treating inflammation caused by multiple sclerosis, fish oil also may have the ability to assist in myelin repair. It is often recommended by alternative medicine practitioners that people with multiple sclerosis take between 3 and 9 grams of fish oil daily, for optimal myelin repair.

Some studies have shown that soya lecithin combined with fish oil may further help myelin repair itself after an MS attack.

It has been shown that the body needs adequate calcium intake in order to optimize its ability to transmit electrical signals. In addition, some studies have shown that high intake of vitamin D may slow the progression of multiple sclerosis. Therefore, it is recommended that people with MS take a combination of calcium and vitamin D daily.

Magnesium and calcium work together to assist electrical signals traveling in the body. Taken before bed, magnesium is also very helpful in treating restless legs syndrome, or spasticity at night. People with MS can take up to 1500 mg of magnesium per day. Too much magnesium can cause loose stools or other bowel problems.

Many people with multiple sclerosis suffer from severe fatigue. A good B-complex sublingual liquid can help treat this. Be sure the preparation you choose has a high concentration of vitamin B-12.

For depression associated with multiple sclerosis, many people use St. John's Wort.

Sometimes, multiple sclerosis can make you feel as if you're thinking slower than normal or that your brain is in a fog. Ginseng and/or Ginko Biloba may help treat this.

My sister happens to have found that taking a supplement containing cow spleens seems to help her.

Of course, speak to your doctor or alternative medicine practitioner before starting this or any other supplement regimen. Some vitamins, minerals, or supplements may interact with standard multiple sclerosis treatments.

Comments

Rachael Byrnes 3 years ago

My best friend has just died from ms which took her life away over the last approc 3 years it ended up attacking her brain was she very unlucky to have an aggresive form of the disease or does this happen often.

OceanZealot profile image

OceanZealot 3 years ago

I am recovering from a sever relapse of my MS. I was a former Copaxone user and now I'm forced to switch to Rebif or the damage from the demylination might get worse. What prompted you to write this article?? You provided readers with so much valuable information about MS.

Keep on writing. See you in the hubs,

OceanZealot

jmebish profile image

jmebish 3 years ago

I was recently diagnosed with MS and am trying to learn everything I can about this disease and your post provided me with some good information I hadn't previously known. Thank you so much! Keep up the great work and visit my hub http://hubpages.com/hub/msfacts

TexasChickiMama profile image

TexasChickiMama 2 years ago

Wow you have done your homework and your family members should be proud. I have MS and have to have 'another' lumbar pucture this firday am not happy about it but the V.A. requires on every 5 years...so....pray for me and keep up th good work.

Angela_1973 profile image

Angela_1973 2 years ago

This is informative article about MS, it does not matter if you have it or not, you have done your research before you write this, you know what you are talking about! There are people around that write about MS and don't have any clue, it makes me mad to read hubs full painfully known facts such as vitamin D and good fats. To this people I will say, do some f...... research and write something new

Good work, I will read more of your hubs!

Rastamermaid profile image

Rastamermaid Level 4 Commenter 16 months ago

Bravo!

I haven't read anything this spot on about MS.

I was diagnosed 7 years ago this month and had a very difficult time understanding and adjusting.

I was in denial and sometimes I think I still am,but when my symptoms flare up I know the deal.

Your hub is great.

GarnetBird profile image

GarnetBird Level 2 Commenter 16 months ago

I appreciate this HUB so much. My best friend/sister has MS-it occurred after she took that awful diet drug, Phen-Phen and we have always wondered if there was a connection--she also lives in a toxic polluted city. Check out my HUB on her daughter, Camille, who at 15 has lost all of her hair due to Alopecia, another auto immune disorder. Thanks for writing this!

DTroth profile image

DTroth Level 3 Commenter 13 months ago

Hi puter_dr,

Thank you for researching this subject for your loved one and then sharing it with the rest of us. Your loved one must feel very special and appreciated and loved.

Very thorough and factual information. Great Hub.

I look forward to reading more from you. (:

peace to you...always,

Diana

viveresperando profile image

viveresperando Level 1 Commenter 12 months ago

this was very informative.

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