Saturday, March 26, 2011


The other day I had an appointment with my new neurologist.  As many of you may know, my previous neurologist, Dr. Hillel Panitch, died in December of Stage 4 Melanoma.

With the new doctor, Dr. Applebee, I was given a full neuro exam [which you all know now what that consists of :)].  I'm also going to be part of a trial which looks for the marker for the JC virus which can make patients taking Tysabri more prone to a potentially fatal brain disease.

Section Contents Menu
Drug Safety and Availability
Postmarket Drug Safety Information for Patients and Providers

Index to Drug-Specific Information Approved Risk Evaluation and Mitigation Strategies (REMS) Postmarketing Safety Evaluation of New Molecular Entities: Final Report Drug Safety Information for Healthcare Professionals- FDA Drug Safety Communication: Risk of Progressive Multifocal Leukoencephalopathy (PML) with the use of Tysabri (natalizumab)

Safety Announcement
Additional Information for Patients
Additional Information for Healthcare Professionals

Data Summary

Safety Announcement

[02-05-2010] The U.S. Food and Drug Administration (FDA) is alerting the public that the risk of developing progressive multifocal leukoencephalopathy (PML), a rare but serious brain infection associated with the use of Tysabri (natalizumab), increases with the number of Tysabri infusions received. This new safety information, based on reports of 31 confirmed cases of PML received by the FDA as of January 21, 2010, will now be included in the Tysabri drug label and patient Medication Guide (see Data Summary for additional information).

Tysabri was approved by the FDA in November 2004 for the treatment of relapsing forms of multiple sclerosis (MS). Tysabri is also approved by FDA for treating moderately to severely active Crohn's disease.

Since 2006, Tysabri has only been available through a risk minimization plan called Tysabri Outreach Unified Commitment to Health (the TOUCH™ Prescribing Program). The program, developed by the FDA and the manufacturer of Tysabri, Biogen-Idec, is intended to make sure that healthcare professionals and patients understand the benefits and potential risks associated with the use of Tysabri, including the risk of PML.Under the TOUCH™ program, every patient who receives Tysabri is closely monitored for the occurrence of PML and other serious opportunistic infections. For additional information about the TOUCH™ program click here1.

Based on the available information, the FDA believes that the clinical benefits of Tysabri continue to outweigh the potential risks. Revisions to the drug label and patient Medication Guide, with the continued use of the TOUCH Prescribing Program, are intended to maximize the safe use of Tysabri and the identification of new PML cases.

Additional Information for Patients

Tysabri is a medication that has been associated with PML and the risk of developing this disease increases with the number of Tysabri infusions received.

PML is a rare infection of the brain caused by the JC virus, which is a common virus often acquired during childhood. Most adults have been infected with JC virus, but do not develop PML. The virus appears to remain inactive until something (such as a weakened immune system) causes it to be reactivated. Once reactivated, the virus may infect the brain and cause PML.

People with a weakened immune system or people taking drugs that suppress their immune system (immunosuppressants) are most likely to get PML. Tysabri is an immunosuppressant medication.

The symptoms of PML may begin gradually, usually worsen rapidly, and vary depending on which part of the brain is infected. These symptoms may include difficulty with walking and other movements, decline in mental function, and problems with vision and speaking. Rarely, headaches and seizures occur. Symptoms of PML may be similar to multiple sclerosis (MS).

If PML is suspected, Tysabri treatment should be stopped and not resumed until further clinical evaluation is performed.

When patients have the clinical symptoms of PML, a PML diagnosis is made by an MRI of the brain and confirmation of the presence of JC virus in the cerebrospinal fluid.

Cases of Immune Reconstitution Inflammatory Syndrome (IRIS) have been reported after stopping Tysabri because of PML. IRIS is a condition that can occur after discontinuing immunosuppressant medications. During immune system recovery, patients can experience a severe inflammatory response to an infection and their symptoms can get worse, sometimes after a period of improvement.

Data Summary

The FDA continues to receive reports of PML in patients receiving Tysabri in the United States and overseas. Tysabri, an immunosuppressant medication, was first approved by the FDA in November 2004 for the treatment of relapsing forms of multiple sclerosis (MS). In February 2005, the marketing of Tysabri was suspended by the manufacturer after three patients in clinical trials (two patients in MS trials and one in a Crohn's disease [CD] trial) developed PML. In June 2006, the FDA approved an application for the re-marketing of Tysabri as monotherapy for the treatment of patients with relapsing forms of MS.

Tysabri is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, an alternate MS therapy. In January 2008, Tysabri was also approved for inducing and maintaining a clinical response and remission in patients with moderately to severely active CD who have had an inadequate response to, or are unable to tolerate, conventional CD therapies.

Since July 2006 (when marketing resumed) through January 21, 2010, there have been 31 confirmed cases of PML worldwide in patients using Tysabri. Of these 31 case reports, 10 were from patients in the U.S. As of January 21, 2010, eight patients have died. In all cases, patients were receiving Tysabri as monotherapy for the treatment of MS. There have been no postmarketing reports of PML in patients treated with Tysabri for CD. In the U.S., less than 2% of Tysabri use is in patients with CD. Tysabri is not approved for CD outside of the U.S.

The risk of developing PML increases with the number of Tysabri infusions received. Tysabri is administered as a single intravenous infusion every four weeks. The overall worldwide cumulative rate of PML in patients who have received one or more Tysabri infusions is 0.5 cases of PML per 1,000 patients. Since Tysabri's re-marketing in the U.S., there have been no cases of PML in patients treated with Tysabri for less than 12 months. The overall worldwide cumulative rate of PML in patients who have received at least 24 infusions is 1.3 cases of PML per 1,000 patients. In the U.S., the cumulative rate of PML in patients who have received at least 24 infusions is 0.8 per 1,000 patients. Outside of the U.S., the cumulative rate of PML in patients who have received at least 24 infusions is 1.9 per 1,000 patients.

Approximately 66,000 people, worldwide, have received at least one dose of Tysabri since marketing resumption (through December 31, 2009). Relatively few patients have received 36 infusions or more, either in clinical trials or since marketing resumption; therefore, the magnitude of the risk of PML and other adverse events in patients who have received 36 infusions or more is not able to be well characterized.

The FDA and its international counterparts remain committed to tracking and monitoring for any change in the risk of PML associated with the use of Tysabri.

This communication is intended to increase awareness about the risk of PML in patients treated with Tysabri.At this time, the FDA believes that the clinical benefits of Tysabri outweigh its risks. Tysabri will remain available to patients through the TOUCH™ Prescribing Program. Under this program, every patient who receives Tysabri is closely monitored for the occurrence of PML and other serious opportunistic infections.

Fortunately, I have shown no signs of having developed this scary side effect and I'm closely monitored.

Two other follow-ups to the exam were the scheduling of an MRI and a blood draw.  Right after my appointment I went down to the phlebotomy lab to have my blood drawn. 

My doctor called me a couple of days ago to let me know the results of the blood panel.  Good news was that my white blood count and my liver function are good.  The downside, or the upside, depending on how you look at it, is that the blood tests showed that my vitamin D levels are really low.  I know...shocker, seeing as where we live.  Normal levels should be between 30 and 40.  My doctor likes to see her MS patients with levels around 50.  My vitamin D level is 5.  Apparently, this can have more of an effect on me than I realized.

Vitamin D Deficiency and related symptoms

Vitamin D deficiency can cause very dangerous disorders. Vitamin D deficiency symptoms are a warning sign that let’s you know something is not quite right. You need to make sure you are getting enough vitamin D from exposure to direct sunlight, vitamin D rich food and vitamin supplements.

Vitamin D deficiency symptoms appear more as various disorders. These symptoms include:

Rickets – It is the most frequent vitamin D deficiency symptom in children. As a result of vitamin D deficiency, the bones are weakened, the bone tissue fail to mineralize leading to soft and deformed bones.

Osteoporosis – It is a similar symptom to rickets, but it is found as vitamin D deficiency symptom in adults. Because of the low vitamin D level in the body there is deficient calcification in bones, which become brittle and soft.

Depression – According to scientist, depression is the result of the lack of vitamin D. They argue that because of urbanization, the sunlight can’t adequately reach the skin, reducing thus the 25(OH) level in the body, causing depression. It has been also discovered that a great number of people suffer from seasonal affective disorder during the winter due to insufficient exposure to direct sunlight. The parathyroid hormone is the one causing the vitamin D deficiency symptom – depression.

Hyperparathyroidism – Results from hypocalcemia, which is a blood condition with unusually low vitamin D level, resulting in hyperparathyroidism.

Fatigue – According to old remedies, sunshine and fresh air are essential for good health. The absence of vitamin D synthesis in the morning can result in fatigue.

Obesity – Vitamin D deficiency is frequently linked to obesity, as the insufficient level of vitamin D holds back the production of hormone leptin, which regulates the fat in the body. Inadequate exposure to sunlight disrupts the normal function of the body, determining the individual to eat more than it is necessary for the body.

The list of vitamin D deficiency symptoms also includes chronic backache, cancer, chronic pain, diabetes, multiple sclerosis, heart diseases or hypertension.

I've started taking vitamin D in the hopes of boosting my levels.  I've noticed issues with depression and fatigue.  Of course, this are also symptoms of MS so I'm not helping myself any by having a vitamin D deficiency.

Hmmm...I also just noticed chronic backache (check) and multiple sclerosis (check).

Thank you for letting me vent and express myself through this venue.  I really appreciate all of you that are reading this...I am very interested in helping my friends and family undertand this disease.

Wednesday, March 16, 2011

3.16.11 What Are the Symptoms of Multiple Sclerosis? (cont'd)

Yesterday, I described some of the symptoms that are common with MS and how they affect me.  I warned of the potential of TMI (too much information), but I ran out of time and energy before I made it to those particular symptoms.  Pretty sure that I'll get to them today, though.  As Charlie Sheen says, "you've been warned" [I promise that I'm really not a fan of his, but that line kind of seemed apropos].

Loss of sensations, speech impediment, tremors, or dizziness

I'm not entirely sure how numbness and loss of sensation differ, because I think that I sort of equate them as the same.  I suppose that numbness means that there is truly no feeling in that part of the body.  However, saying my feet are numb is a lot easier than saying, "I'm experiencing loss of sensation in my feet."  Let's see what the internet has to say...

Health Encyclopedia: Numbness And Tingling

Definition:  Numbness and tingling are abnormal sensations that can occur anywhere in your body, but are often felt in your fingers, hands, feet, arms, or legs.

Alternative Names:  Sensory loss; Paresthesias; Tingling and numbness; Loss of sensation

There are many possible causes:
•Remaining in the same seated or standing position for a long time.
•Injuring a nerve supplying the body part where you feel the sensation. If you have a neck injury, for example, you may feel the sensation anywhere along your arm or hand. Similarly, a low back injury can cause sciatica -- a sensation of numbness or tingling down the back of your leg.
•Lack of blood supply to the area. For example, plaque buildup from atherosclerosis in the legs can cause pain, numbness, and tingling while walking. (This is called claudication.)
•Pressure on the spinal nerves, as from a herniated disk.
•Carpal tunnel syndrome. This can cause numbness or tingling in your wrist, fingers, hand, or forearm.
•Certain medical conditions, including diabetes, underactive thyroid, multiple sclerosis, seizures, or migraine headaches.
•Abnormal levels of calcium, potassium, or sodium in your body.
•Vitamin B-12 deficiency.
•Transient ischemic attack (TIA) or stroke
•Certain medications.
•Toxic action on nerves, such as that from lead, alcohol, or tobacco.
•Radiation therapy.

...hmm, sounds to me like they're kind of the same.  Ok, let's move on to the next one.

I don't think that I've really had a problem with a speech impediment, except when I've had a relapse.  But, then everything kind of stops working so that makes sense.  The same goes for tremors.

I definitely notice dizziness on a daily basis.  Part of this probably has to do with the fact that this is a side effect of one of my medications.  During my last relapse, the one from just over 2 years ago, the major issues that were affecting me were numbness on one side of my face as well as my hands and feet, and dizziness.  With multiple treatments not working to end my relapse, I had an MRI taken.  I found it amazing that when I talked with my doctor, I was told that the lesions that were highlighting on my brain were in the areas that were responsible for my symptoms.  Of course, this makes sense, but it's cool to me that our brains are so well mapped out that if my doctors just looked at the MRI and not at me, that they would be able to tell what problems I was having.

Bladder and bowel dysfunction

Hello to the elephant in the room.  Unfortunately, I deal with this group of symptoms on a very regular basis.  I'm sure that you don't want to hear the gory details of my experiences on this front, so I'm going to turn to a generalized description of these symptoms.

Bladder and Bowel Dysfunction in Multiple Sclerosis

Bladder and bowel function impairments

Impairments in bladder function with MS are common and may affect up to 78% to 90% of patients during the course of multiple sclerosis (MS). The prevalence of bowel dysfunction in MS is estimated to be about 68% of patients. Bladder and bowel symptoms are relatively common in multiple sclerosis and can be treated. Goals for bladder and bowel management include maximizing independence and preventing incontinence and complications.

Bladder function

As with other MS symptoms, the kinds of bladder problems vary from person to person and can change over time. People may:
  • have trouble controlling the release of urine (incontinence)
  • experience frequent urges to urinate
  • feel constant bladder fullness
  • have difficulty in starting to urinate or in sustaining a steady stream
  • In fact, some people may experience urinary retention and will require some form of catheterization. All these symptoms usually indicate problems in the functioning of the muscles that control urination, although urinary tract infection (UTI) must be eliminated as a cause.
An appointment with an advanced practice nurse or physician assistant to initially assess the bladder symptoms is helpful. Initial bladder assessment includes obtaining a thorough history from the patient and focusing on the primary concern.

You will be asked to void during the time of the appointment and urine volume will be measured. Please come to the appointment well hydrated with the need to void.

The specimen will be analyzed for a urinary tract infection through laboratory urinalysis (UA) and culture and sensitivity (C&S). We will also measure for a post-void residual amount with a bladder scanner in the office.

Some recommendations for treating bladder symptoms can be made after the initial assessment. However, if we are not able to help with your bladder symptoms or if you continue to experience frequent bladder infections you may be referred to a specialist in urology. The urologist can help evaluate the cause of the problem through evaluation of the upper and lower urinary tracts. Other treatment options may include Botox® or surgical interventions.

Do not try to self-treat your bladder problems by drinking less fluid! This can lead to constipation or urinary tract infections.

Bowel function

Bowel dysfunction is also a common symptom for patients with MS (Hinds et al., 1990). One study of 77 patients with clinically definite MS showed that bowel problems are not associated with bladder dysfunction, patient's age, degree of disability, or duration of disease (Chia et al.,1995).

The most common bowel complaint from a person with MS is constipation, but the most distressing bowel complaint is probably that of involuntary bowel/fecal incontinence. Because MS interrupts or slows the transmission of signals to and from the brain, the electrical impulses to the muscles that are involved in emptying your bowel can become disrupted.

Depending on your particular bowel problem helpful suggestions can be made. General interventions for bowel dysfunction include:

  • Education about the causes of bowel dysfunction
  • Encouraging dietary changes to include more fiber and fluid
  • Consulting with your health care provider to adjust medication regimens that may be contributing to bowel dysfunction
  • Establishing a regular bowel routine, individualized to the patient
  • Encouraging regular physical activity
  • Bladder and bowel symptoms are common in MS and can be effectively managed. Speak with your healthcare provider about what you can do to help keep these symptoms under control.

Phew...that's out of the way.

Mental changes (decreased concentration, attention deficit, memory loss)

I was trying to post yesterday when Jamie got a phone call.  I was trying to post and was having a very hard time focusin on what I was writing.  I actually had to ask Jamie to leave the room because I couldn't concentrate.  I've also noticed that when I'm in a room with a group of people and trying to have a conversation with one person, I find that it is very difficult for me to zero in on the one person and not not hear everything else in the room.  It can be very distracting.

...this seems to be a good segue into attention deficit.  I imagine that decreased concentration and attention deficit go hand in hand.  Of course, as I write that, I'm thinking, "Well, no duh!"  Fortunately, the medication that I take to keep me awake, Provigil, is also prescribed for ADD.  At work this can work against me, though.  I'll be working and totally focused on what I'm doing and suddenly I realize that it's 2:30 and I haven't had anything to eat...all day.  Wait, what was I saying?

Memory loss...ooh boy, that's a big problem with me.  I don't think that most people understand what it means to have such a problem with memory.  When I talk with people that I know about the fact that I have such a problem in with my short term memory, I often hear, "I know what you mean.  It's tough getting older."  I don't know how to explain how it's different.  Ok, I'm going to turn to the internet again to help me explain.

MS & Memory Problems

X Genevieve Van WydenGenevieve Van Wyden began writing in 2007. She has written for “Tu Revista Latina” and owns three blogs. She has worked as a CPS social worker, gaining experience in the mental health system. Van Wyden earned her Bachelor of Arts in journalism from New Mexico State University in 2006.

By Genevieve Van Wyden, eHow Contributor

.Multiple sclerosis can cause more than physical degeneration of muscle function and abilities. MS can also cause the patient to develop problems with memory loss and cognitive degeneration. Processes such as storing and retrieving memories, processing information and remembering events can be affected. The ability to plan and prioritize can also be negatively impacted.

Cerebral MS

The link between multiple sclerosis (MS) and cognitive (memory) problems is well-known, with 70 percent of diagnosed cases of MS also featuring related memory-loss problems. 50 percent of patients diagnosed with early stage MS show related cognitive losses.

The most commonly found cognitive issues found in MS patients are in attention, memory, word-finding and abstraction. An increase in emotional lability (frequent, pronounced changes in mood) and slower information processing are also features of MS-related cognition issues.

When a person is experiencing severe cognitive issues related to MS, she is said to have "cerebral MS". Persons with this level of cognitive involvement often do not understand the severity of their memory loss issues.

Types of Memory Loss

Two types of memory loss related to MS are known: the first is recent memory loss, or that which affects things like remembering names and phone numbers, and when to take medications. MS most often affects this type of memory function.

The second type of memory loss is procedural or remote memory (how to use a computer or ride a bike). This kind of memory loss affects things and processes that were learned many years ago. MS does not have as much of an effect on this category of memory.

Effect on Executive Function

MS-related memory loss can have an effect on executive functions, which are the higher-level processes involved in more complex mental operations. These are prioritizing tasks, planning and the ability to problem-solve. Persons suffering from MS develop difficulty with this kind of function because it involves shifting from concept to concept and using mental quickness. They essentially feel lost in a maze.

Handling Memory Loss

The patient suffering from MS-related memory loss can rehabilitate his brain by going through rehabilitation to regain some cognitive functions. Some other ways he can handle memory loss include writing things down, using checklists, doing something when he thinks of the chore, putting objects in the same spot every time and prioritizing and focusing only on the most important tasks.

Use Electronic Memory Aids

The person with MS can utilize electronic memory aids such as the personal desk assistant (PDA). Cell-phone calendars can also help her to remember what she need so she can get through the day. Other devices such as tape recorders can also help, to record important information or a to-do list.

Read more: MS & Memory Problems


Depression is common with MS.  There have been questions as to whether depression is a symptom of MS or because of the MS.  I think that it's probably a combination of both.  I also have problems with anxiety, so I take Zoloft.  I know that it definitely makes a difference, because on the days that I don't take it, either from forgetting or running out, I find that my fuse is shorter.

I have done my best to explain how the most common MS symptoms affect me.  I hope that it has helped many of you to understand a bit more.

If you have ANY questions, please comment on my blog.  Thanks so much for reading.

Tuesday, March 15, 2011

3.15.11 What Are the Symptoms of Multiple Sclerosis? (to be continued)

In the interest of helping my friends and family understand some of what living with MS is like, I'm going to be honest in explaining the symptoms and how they affect me. My apologies if this is TMI (too much information), but I'm letting you know what's in store so you can opt out now :)

Visual Disturbances (blurred vision, color distortions, loss of vision in one eye, eye pain)

I feel fortunate that I haven't had many issues with my vision, other than my initial diagnosis. In my first or second exaberation (the ones that helped to diagnose me), I had something called nystagmus:

Nystagmus most commonly causes the eyes to look involuntarily from side to side in a rapid swinging motion rather that staying fixed on an an object of person. Some nystagmuses, however, cause the eyes to jerk sideways or up and down.

Acquired nystagmus can be caused by a disease (multiple sclerosis, brain tumor, diabetic neuropathy), and accident (head injury), or a neurological problem (side effect of a medication).

I have had some other issues, but they have been infrequent. At one point, around the time of a relapse, I was having some symptoms where I was seeing wavy lines in front of one of my eyes. In a way, it looked kind of like a static-y tv set. The episode was brief and has only happened one other time.

Limb weakness, loss of coordination and balance

Usually, when my walking starts to be affected, I'm about to head into a relapse. I start to limp, caused by my right hip buckling. This is actually the main symptom that spurred my first visit to the neurologist. It was strange...I almost felt like I was walking that way intentionally...I can't really explain it. I knew that I couldn't help my distorted gait...perhaps I felt this way because it didn't feel like it was my leg. It kind of felt dettached from my body. For the past two years, my feet have been numb so I have become more familiar with the feeling when my leg starts to get 'wonky' and it doesn't feel quite so much like it's someone else's leg.

As for loss of coordination, I'm not sure that I lost any coordination, or it just got worse. I am constantly misjudging doorways and thinking that either I'm thinner than I am, or that the doorframe is wider than it is. I find bruises on my arms and legs from where I have cut a corner too sharply, resulting in running into a doorjamb, catching my thigh on the corner of a desk, etc. I used to be more concerned when I coudn't place how I'd gotten bruised. However, that is another symptom that I've grown used to as well.

In a previous post, I mentioned the different tests that make up a neurological exam. One of those tests is for Romberg's sign. This is tested by having the patient stand with feet together and then closing their eyes. The person doing the testing acts as a spotter, don't worry. I fail this one every time. A passing test would involve standing with feet together, eyes closed, and no swaying. A failing test results in swaying from left to right or, in my case, more like 'TIMBER' with a tree. To the right...every time.

Muscle spasms, fatigue, numbness, prickling pain
My experience with muscle spasms, or spasticity, has been minimal. There are some people who experience spasticity every day. In the past, I would wake up in middle of the night with major cramps in my calves. It would feel like the calf muscle had snapped and rolled up. My wonderful husband, Jamie, would massage my calves when ever this happened. Fortunately, I haven't had this problem for a while.

Another symptom that I had that was similar to spasticity was called tonic spasms.

One of the most common symptoms occurring in MS is neuro-muscular spasm. This troublesome symptom may be of two types, etiher tonic or clonic spasm.

Tonic spasm is when the resting muscle tone is abnormally increased. This is often simply apparent as stiffness, when the limb appears rigid and difficult to move despite the absence of absolute paralysis.

Clonic spasm: this is perhaps the most distressing of the two forms as the affected limb or muscle may jerk violently without warning, causing the individual to lose balance and perhaps fall.

I was at work one day at my desk, when suddenly the right side of my body went stiff and I couldn't move for a bit, probably about 30 seconds to a minute. My face contorted and my leg went stiff. This happened again when I was walking and I almost fell. I told my doctor about this, and I was told that this was called a tonic spasm and I was prescribed Tegratol, a medication usually used to treat epilepsy.
Fatigue is symptom that I deal with every day. I have a prescription for Provigil, more commonly used with ADHD. It also works to keep me awake during the day. I've found that if I forget to take my pill, or I've run out of my medication, I can't make it through work past noon. On those days that I have needed to leave, I've gone home and taken a 4 hour nap. Oddly enough, I take Ambien every night to help me sleep. It would seem that if I stopped taking both medications that I would be able to sleep at night and stay awake during the day. Unfortunately, it doesn't work that way.

Numbness has become a part of my daily life. My feet have been numb for the past two years, to the point of my not feeling comfortable driving. At times, I am so used to the feeling, or lack there of, that I forget that I can't feel my feet.

The prickling pain is called neuropathy. In a way, it's a combination of numbness and pain to the touch. That doesn't sound like it makes sense, but it's sort of like the feeling when your feet are asleep and they are waking up. There is a point at which your feet feel numb and painful at the same time.

So far, I've only accounted for about half of the symptoms that I listed in the previous post. I will continue to describe the symptoms and how I'm affected by them in my next post.

Monday, March 14, 2011

3.14.11 What are the types of Multiple Sclerosis? (cont'd)

What are the types of Multiple Sclerosis?

About a month after my stay in the hospital I had another exacerabation. This one involved Banding:

Banding is a symptom of multiple sclerosis in which someone feels as if they have a tight band around their chest or pressure on one side of their torso. The effect is sometimes referred to as the 'MS hug'. Some people experience a similar symptom in their hands or feet, where it feels as though they are constantly wearing gloves or boots.

The effect is an example of dysaesthesia or altered sensation which can also occur as pins and needles, burning sensations or numbness. The symptom occurs when messages from sensory nerves are blocked or disrupted. These symptoms are classed as a form of pain.

Although uncomfortable, the symptom usually passes without treatment. Some people find that creating an actual cause for a feeling of tightness (e.g. wearing tight clothing, or a close fitting top or a glove on the affected hand) can lessen the impact of the discomfort of the symptom.

Reference: Burgess M., Multiple sclerosis: theory and practice for nurses, London: Whurr; 2002

Since this was my second potential relapse, and would confirm a diagnosis, my doctor sent me for an MRI. This time the scan was of my cervical spine instead of my brain. The banding was along the line of my bra strap. The MRI showed a lesion right where I was feeling the 'MS Hug'.

This meant that I had a diagnosis of Relapsing-Remitting MS.

Multiple Sclerosis Treatment Medication

Since I had an official diagnosis, I could start medication. My options were Avonex, Betaseron, or Copaxone, all of which are injections, either daily or several times a week. Avonex and Betaseron are both interferons which are injected either subcutaneously or intra-mulscularly. An interferon works using a broad spectrum approach, meaning that the MS is not targeted directly. The most major side effects of interferons are flu-like symptoms. Usually by the time the patient has gotten over the side effects, it is time for the next injection.

I decided on Copaxone, a daily injection. Although it seems like you might want to have a break from sticking yourself with a needle, I preferred the regularity.

Q: How does COPAXONE (glatiramer acetate injection) work in my body?

A: COPAXONE is a unique therapy that is thought to work both outside and inside the central nervous system (CNS) to fight the effects of multiple sclerosis 3-5

COPAXONE is believed to work with your immune system to change the way it reacts to MS by both preventing harmful immune cells from developing and simultaneously stimulating the production of beneficial immune cells in your body. These "good" COPAXONE-activated cells then enter the CNS and help reduce inflammation and damage at the site of the lesions. 3

3. Miller A, Shapiro S, Gershtein R, et al. J Neuroimmunol 1998-92(1-2): 113-121 4. Ziemssen T, Kumpfel T, Klinkert WE, Neuhaus O, Hohfield R. Brain 2002: 125(Pt11): 2381-2391 5. Chen M, Valenzuela RM, Dhib-Jalbut S. J Neurol Sci. 2003:215(1-2): 37-44.

This all happened in 2002. Since then I have switched injections as well as taken other medications for the manifestations of MS. I'm going to keep that topic for another day.

If you have any questions or comments, you have an option to do so at the bottom of this post.

'til next time...

Saturday, March 12, 2011

3.12.11 - Who Can Get Multiple Sclerosis

For my post yesterday, I used the link 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)

Thursday, March 10, 2011

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

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.


Wednesday, March 9, 2011


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

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.

Tuesday, March 8, 2011


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 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 :)

Saturday, March 5, 2011


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...

Friday, March 4, 2011


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:

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.

Wednesday, March 2, 2011


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.