3.12.11 - Who Can Get Multiple Sclerosis

For my post yesterday, I used the link http://www.medicinenet.com/multiple_sclerosis_pictures_slideshow/article.htm. Rather than just posting the link, I wanted to display all of the information that it contained. So, I put together a presentation based on the site. Today I want to use the different points and then explain how multiple sclerosis has affected me.


Who Can Get Multiple Sclerosis?

I was diagnosed with multiple sclerosis in 2002, just around the time that I turned 28. I started to lose feeling in my right foot. By the next day, the tingling had moved up to about my mid-thigh. On the third day, the numbness had reached my right cheek. At that point, Jamie got pretty concerned. The symptoms that I was having were starting to sound like those of a stroke. I made an appointment through my doctors office with a nurse practitioner. She examined me and told me that it definitely was not MS because she had worked with MS patients before and that . I was told that if the feeling didn't go away that I should make another appointment. Needless to say, it didn't and I started to have trouble walking. I saw my Primary Care Provider and he gave me neurological exam. An appointment was made for me to see a neurologist in about a month. I was told that, in the meantime, if my vision got worse that I should go to the emergency room. A couple of days later, Jamie and I found ourselves spending a day in the ER. After about 6 hours and some tests, I was admitted to the hospital being told that it was either a brain tumor, a series of small strokes, or multiple sclerosis. Guess which one I was hoping for?


How is Multiple Sclerosis Diagnosed?

Having gotten settled in my room, Jamie and I were told that I had an MRI scheduled for aroung midnight that night. The next day, there were more tests to be done. Blood was taken. I was catheterized to obtain a urine sample. I had a spinal tap. At that point, the doctors need to review the tests so I was sent home. As is standard treatment for an MS relapse, I was prescribed Solumedrol, a liquid steroid to be given intravenously. Before I left the hospital, an IV line was put in my arm. A case manager had arranged for the VNA (visiting nurses association) to come to my hous to adminster the medication for the next 5 days at which point I would have a step-down of oral steroids.


What Are the Types of Multiple Sclerosis?

The following week I had an appointment with the neurologist to review the results. My doctor performed a neurolgical exam on me. What is a neurological exam?


There are many different neurological tests and the ones your neurologist chooses to perform will depend, in part on the symptoms that you present with. Here are some of the more common ones.


Romberg's sign: This is a test for ataxia (incoordination or clumsiness of movement that is not the result of muscular weakness) and involves standing with your feet together with your eyes closed. Ataxics have great problems standing still under these conditions.


Gait and coordination: The neurologist evaluates ataxia in various parts of the body by observing the patient walking normally, walking heel-to-toe and finger-to-nose tests The neurologist will also be looking for intention tremor (shaking when performing small motor movements) as well as ataxia in this last test.


Heel/Shin test: This is a test for ataxia and cerebellar dysfunction. You have to bring the ball of your heel onto the knee of your other leg and then move it down the shin.


L'Hermittes sign: This is a test for lesions on the spinal cord in the neck. The neurologist will ask you to lower your head towards your chest. A positive L'Hermittes will generate buzzing, tingling or electrical shock sensations in one or more parts of the body.


Optic Neuritis: This is a condition of the eye caused by inflammation and demyelinaton of the Optic Nerve and is perhaps the most commonly presenting symptom in MS. The tests involve the ubiquitous reading of letters from a board and a test for color vision using an "Ishihara" color chart. An examination with an opthalmoscope will reveal pallor of the optic nerve in old optic neurites.


Hearing Loss: This is done by lightly clicking the fingers next to each ear and asking the patient which ear the click was done next to.


Muscle Strength: This involves resisting the neurologist with various muscle groups. Differences in strength between left and right sides are easier to evaluate than symmetrical loss unless the weakness is severe.


Reflexes: This is done with both ends of the hammer. The reflexes can be normal, brisk, i.e. too easily evoked or non-existent.


Babinski's sign: A test for signs of disease process in the motor neurons of the pyramidal tract. The test involves drawing a semi-sharp object along the bottom of the foot. The normal response in adults and children is for the toes to reflex downwards (flexor response). In babies and people with neurological problems of the corticospinal tract, the big toe moves upwards (extensor response).


Chaddock's Sign: Similar to Babinsky's but testing for lesions inthe corticospinal tract. The neurologist touches the skin at the outside of the ankle. A positive response in upwards fanning of the big toed just like in Babinski's test.

Hoffman's sign: This is also similar to Babinski's but involves the hands rather than the feet. Again it tests for problems in the corticospinal tract. The test involves tapping the nail on the third or fourth finger. A positive response is seen in flexion of terminal phalanx of thumb.

Doll's Eye Sign: The neurologist is looking for dissociation between movement of the eyes and of the head. A postive response is when the eyes move up and head moves down.

Sensory: This is done with tuning forks and pins and tests the level of sensory perception in certain parts of your body.

At this point, there wasn't a definitive diagnosis, but the theory was that I had MS. At this point, though, a diagnosis couldn't be made until a second episode.

(to be continued)

3.11.11 - Introduction to Multiple Sclerosis

What is Multiple Sclerosis?


Multiple Sclerosis (MS) is a disease in which the nerves of the central nervous system (CNS) degenerate. The CNS is made up of the brain and spinal cord. They process information from our environment and control voluntary muscle movements to allow the body to do certain things. This neural system works efficiently, unless there is a disease process affecting the pathways in the spinal cord and brain. Multiple Sclerosis is on of the diseases that can affect these pathways and results in the destruction of myelin, a covering or insulation for nerves, that improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. The demylenation (also know as plaques) disrupts the transmission of information in the CNS and leads to the symptoms seen in Multiple Sclerosis.


slide 1





Who Can Get Multiple Sclerosis?

Globally, the median estimated prevalence of MS is 30 per 100,000 of population. About 350,000 people in the U.S. have Multiple Sclerosis. Usually, a person is diagnosed with MS between 20 and 50 years of age, but Multiple Sclerosis has been diagnosed in children and the elderly. Multiple Sclerosis is twice as likely to occur in Caucasians as in any other group. Women are twice as likely as men to be affected by MS earlier in life.

slide 2

What Causes Multiple Sclerosis?

The cause of multiple sclerosis is still unkown. In the last 20 years, researchers have focused on disorders of the immune system and genetics for explanations, suspecting that a foreign agent such as a virus alters the immune system so that the immune system perceives myelin as an intruder and attacks it. Definitive proof of the viral theory is still lacking. However, the attack by the body's immune system on the neural tissues that it is supposed to protect is based on reasonable evidence. This attack is termed autoimmunity, thus making multiple sclerosis an autoimmune disease.

When Multiple Sclerosis Attacks

In multiple sclerosis, an agent such as a virus or foreign antigen, in theory, may alter or interact with the immune system so that the immune system perceives myelin as an intruder and attacks it. Inflammation occurs and causes myelin to disappear. Consequently, the electrical impulses that travel along the nerves decelerate, that is, become slower. In addition, the nerves themselves are damaged. While some of the myelin may be repaired after the assault, some of the nerves are stripped of their myelin covering (become demyelinated). Scarring also occurs, and material is deposited into the scars and forms plaques. As more and more nerves are affected, a person experiences a progressive interference with functions that are controlled by the nervous system such as vision, speech walking, writing, and memory.

slide 4

Is Multiple Sclerosis Inherited?

Although the role is unclear, genetics may play a role in multiple sclerosis. The general population has less than a 1% chance of developing multiple sclerosis. The chance increases in families where a first-degree relative has the disease. Thus, a brother, sister, parent, or child of a person with multiple sclerosis stands a 1% to 3% chance of developing multiple sclerosis. Similarlly, an identical twin runs a nearly 30% chance of acquiring multiple sclerosis whereas a non-identical twin has only a 4% chance if the other twin has the disease. These statistics suggest that genetic factors play a major role in multiple sclerosis. However, other data suggest that environmental factors also play an important role.

What Are the Types of Multiple Sclerosis?

In some ways, each person with multiple sclerosis lives with a different illness. Although nerve damage is always involved, the pattern is unique for each individual who has MS. Although individual experiences with MS vary widely, doctors and researchers have identified several major types of MS. The categories are important because they help predict disease severity - and response to treatment. We'll discuss each of these categories presented on the following slides.

slide 6

Relapsing-Remitting (RR) MS

About 65%-80% of individuals begin with relapsing-remitting MS (RR-MS). This is the most common type of MS and is characterized by unpredictable acute attacks called "exacerbations," with worsening of symptoms followed by full, partial, or no recovery of some function. These series of attacks are followed by complete or partial disappearance of the symptoms (remission) until another attack occurs (relapse). It may be weeks to decades between relapses.

slide 7



Primary-Progressive (PP) MS

Primary progressive MS (PP-MS) is a type of MS characterized by a gradual but steady progression of disability, without any obvious relapses and remissions. This form of disease occurs in just 15% of all people with MS, but it is the most common type of MS in people who develop the disease after the age of 40.

slide 8

Secondary-Progressive (SP) MS

Secondary-progressive MS (SP-MS) intially begins with a relapsing-remitting course, but later evolves into progressive disease. The progressive part of the disease may begin shortly after the onset of MS, or it may occur years or decades later. About 50% of RR-MS individuals will develop SP-MS within 10 years. Over several decades, most RR-MS persons will experience progression to SP-MS.

slide 9

Progressive-Relapsing (PR) MS

Progressive-relapsing MS (PR-MS) is the least common form of the disease and is characterized by a steady progression in disability with acute attacks that may or may not be followed by some recovery. People with progressive relapsing MS intially appear to have primary progressive MS.

slide 10

What are the Symptoms of Multiple Sclerosis?

Symptoms of multiple sclerosis may be single or multiple and may range from mild to severe in intensity and short to long in duration. These include:

• Visual disturbances (blurred vision, color distortions, loss of vision in one eye, eye pain)
• Limb weakness, loss of coordination and balance
• Muscle spasms, fatique, numbness, prickling pain
• Loss of sensation, speech impediment, tremors, or diziness
• Bladder and bowel dystunction
• Mental changes (decreased concentration, attention deficit, memory loss)
• Depression
• Paranoia
• Uncontrollable laughter and weeping

Slide 11

How is Multiple Sclerosis Diagnosed?

Due to the broadrange and subtleties of symptoms, multiple sclerosis may not be diagnosed for months to years and the onset of symptoms. Physicians, particularly neurologist, take detailed histories and perform complete physical and neurological examinations.

• MRI
• Electrophysiological test
• Cerebrospinal fluid exam (spinal tap, lumbar puncture)

Collectively, these three tests help the physician in confirming the diagnosis of multiple sclerosis. For a definite diagnosis of multiple sclerosis, dissemination in time (at least two separate symptomatic evens or changes on MRI over time) and in anatomical space (at least two separate location within the central nervous system, which can be demostrated by MRI or neurological exam) is usually required. Most physicians consult a neurologist to help obtain the definitive diagnosis of multiple sclerosis.

How is Multiple Sclerosis Diagnosed?

On the left is a brain MRI of a 35 year old man with relapsing remitting multiple sclerosis that reveals multiple lesions with high T2 signal intensity and one large white matter lesion. The right image shows the cervical spinal cord of a 27 year old woman representing a multiple sclerosis demyelination and plaque (see arrow).

slide 13

How is Multiple Sclerosis Treated?

There are many issues for the patient and physician to consider in treating multiple sclerosis. Goals may include:

• improving the speed of recovery from attacks (treatment with steroid drugs);
• reducing the number of attacks or the number of MRI lesions; or
• attempting to slow progression of the disease (treatment with disease modifying drugs aimed at specific symptoms).

Multiple Sclerosis Treatment

Once goals have been set, initial therapy may include medications to manage attacks, symptoms, or both. An understanding of the potential side effects of drugs is critical for the patient because sometimes side effects alone deter patients from drug therapy. Patients may choose to avoid drugs altogether or choose an alternative drug that may offer relief with fewer side effects. A continuous dialogue between the patient and physician about the medications is important in determining the needs for treatment.

Drugs know to affect the immune system have become the primary focus for managing multiple sclerosis. Initially, corticosteroids, such as prednisone (Deltason, Liquid Pred, Orasone, Prednican-M) or methylprednisone (Medrol, Depo-Medrol), were widely used to manage only severe multiple sclerosis attacks (that is, attacks leading to physical disability or causing pain).

Multiple Sclerosis Treatment Medications

Since 1993, medicatinos that alter the immune system, particularly interferons, have been used to manage multiple sclerosis.

Interferons for relapsing multiple sclerosis:

• Interferon beta-1b (Betaseron and Extavia)
• Interferon beta-1a (Rebif)
• Interferon beta-1a (Avonex)

Other medications approved for relapsing multiple sclerosis:

• Glatiramer acetate (Copaxone)
• Natalizumab (Tysabri)
• Mitoxantrone (Novatrone)
• Fingolimod (Gilenya)

How Are the Physical Manifestations of MS Treated?

There are numerous medications that are used to manage complications associated with multiple sclerosis. The following table (continued on the next slide) lists common complications, examples of drug and non-drug therapies, and comments about complications and/or management.

slide 17

Physical Manisfestations of MS Treated (continued)

Additional complications, examples of drug and non-drug therapies, and comments about complications and/or management are presented on this slide.

slide 18

http://www.medicinenet.com/multiple_sclerosis_pictures_slideshow/article.htm

I hope that this has helped to understand MS just a little bit. With my next post, I plan to explain which symptoms have affected me.

Thank you so much for having an interest.

Devon

3.9.11

Not sure how many of you have heard of the newly approved oral medication for MS, Gilenya.

http://www.pharma.us.novartis.com/product/pi/pdf/gilenya_pmg.pdf

I've had friends and family ask me if I've thought about trying this new medicine. It hasn't crossed my mind to switch since Tysabri is working so well for me. I asked my doctor about it, not because I wanted to take it but more because I was curious. I was also told that it doesn't make sense to switch therapy when then one that I'm on is working. Besides, I have a hard enough time remembering my other pills. If I miss those, it's not great, but not a deal-breaker. Missing medication that is meant to keep my brain from scarring itself...probably not a good thing.

In future posts, I going to find more information on Multiple Sclerosis that is explained in layman's terms instead of medical terms...stay tuned.

3.8.11

My work was closed yesterday due to the snowstorm. The picture above is of our COVERED back porch. Looking out the sliding glass doors yesterday it was hard to tell how deep the snow is since there was nothing for perspective. It all looked very flat. It wasn't until Ollie went out to go to the bathroom that I could see really how much snow there was. Jamie was wonderful...he cleared the driveway with the snowblower as well as shoveling out a spot for Ollie. Unfortunately, Jamie had to go to work - the Outdoor Gear Exchange is ALWAYS open. Actually, it makes sense...no one can drive...none of the stores are open downtown, except for the OGE...pretty smart really.

I like the clean new look of a fresh snowfall. On Facebook, I saw many comments from people that don't live in Vermont saying, "I don't know how you deal with it." Frankly, I like the snow and the cold - not bone-chilling cold - but there's a reason that I live in VT. Lots of snow outside makes it feel cozy inside...especially, when you have a nice new insulated house :)

3.5.11

I think that I might be depressed...of course, according to Charlie Sheen, that's my decision. I can't think of anything in particular that I feel depressed about, but it's just a feeling of sadness that comes over me. I feel that I usually keep a pretty good perspective on the whole situation with MS, but sometimes the mind just takes over and I feel sad.

Depression is one of the symptoms of MS. It doesn't seem clear to me whether it's a result of the diagnosis or just a symptom that comes along with the disease. I guess it's probably a combination of the two. In writing this, I'm not trying to have my friends and family pity me; I would just like to try to relay some of what I go through on a daily basis. I'm not saying that I feel like this every day, but MS is unpredictable. I must say, watching The Sixth Sense isn't helping much...

3.4.11

I had my monthly infusion today. I've been asked what that is, exactly. Every month I go to my neurologist's office to get my medication infused intravenously. The picture in my profile is from a day at treatment. The medication is called Tysabri. It definitely has an interesting past:

http://www.tysabri.com/tysbProject/tysb.portal/_baseurl/threeColLayout/SCSRepository/en_US/tysb/home/index.xml?utm_campaign=Biogen_Tysabri_Search_TysabriBranded&utm_source=google&utm_medium=cpc&utm_content=Tysabri&utm_term=Tysabri

There were definitely some big decisions to be made when I made the choice to go on Tysabri. Looking at the link, you'll see that there can be some major side effects, but I truly believe that the benefits outweigh the risks.

Before I started taking Tysabri, I had at least one relapse a year, maybe two. My last relapse was in Feb 2009, at which point I was hospitalized so I could receive plasmapheresis. [I have past blogs from that time period]. After that, my doctor decided that the medication that I was on was not working like it should, so I started on Tysabri. I haven't had a relapse since. My feet are still numb (or tingly, I guess - I'm never sure quite what the word numb entails).

The drug is strictly monitored and requires a pre-authorization every three months, which in itself can cause issues. Despite the risks involved, I am very happy with the path that I am following right now for the course of the MS.

3.2.11

Ok...I don't want to sound pitiful or narcissistic but I kind of wish that I had more friends. I definitely know a lot of people, but I don't really have any close friends. Jamie and Ollie are my two best friends. I know that it has a lot to do with the fact that I don't go out, and that I spend almost all of my time at home when I'm not at work. Not driving definitely makes a difference. Except that this has really always been the case. I don't have any good friends from childhood...I don't have any good friends from boarding school...friends that I do make don't seem to last through different phases of my life. I guess maybe I'm just one of those people who only has a few really close friends and a lot of acquaintances...right now I'd like a couple more close friends.