7.6.11 a lot of time has passed

I've been slack about my blogging and, like I've said before, I'm going to try to keep up with this.  Wow, it's been almost 3 months.

Soon after my last post, we went to Sandals in the Bahamas.  This is a part of a message I sent to a friend:

1. Using points from our credit card, I purchased 2 $100 spa certificates. Meaning that we would have $200 to spend solely at the spa - nails, massage, product, whatever. I checked with the front desk and they didn't have a record of these. I was told to check back later. I did and they still didn't have any record. This time I was told that I need to show them proof that I'd purchased these. I went to our room, got on the computer and searched for the email that I got from the credit card company. I found the email and put it on my phone to bring down to show the desk clerk. The email showed a purchase with points aned had something about the spa at the bottom of the email. They told me that this wasn't good enough proof. I'd had it...this was about the 4th trip to the front desk. We had concierge service so we went to their desk. We talked to one of the agents who called the universal Sandals office right away. She stayed on the phone until she got the bottom of the issue. We sent back to our room and she called us when she'd figured it out and put the credits on our account. It was ridiculous that we had to go to the front desk as many times as we did.

2. There was a dinner for the returning guests. We had a nice time and the food was pretty good. At one point during the meal we were told to reach under our chairs to see if there was anything attached to the underside of the seat. We were told that the whole table of the person who found it would win a prize. Jamie found something under his chair that said, “ Congratulations! You are the winner.” The person up front was asking who had gotten the prize. Our table was yelling that it was us. We were then told that the prize was a couples massage (apparently not for the whole table). Meanwhile, while our table was yelling, someone from another table was going up to the front to claim the prize. Turns out, there was a piece paper under his chair from another event. We had an employee from the resort , Yasmina, sitting at our table and she said that she would make sure that we would get our prize. We were psyched an went through the next couple of days knowing that we were going to have the massage on the second to last day, Sunday. On Saturday morning, we checked at the front desk to make sure that the credit had been applied. They checked with the spa and said that there was no record of it. Grrrrrr. We had to go talk to another person about what had happened to the credit. When we talked to him, he said that he was told that Yasmina had said that the paper was under her chair, which would have made the prize null and void. We told him that the paper was under Jamie’s chair and he told us that Yasmina wasn’t there that day so he would have to call her on her cell. Eventually, after a couple more visits, the issue was resolved and we got our prize.
3. We had a reservation at 8:00 pm for the Hibachi restaurant. Around 6:30 we started to think about getting ready.  Ynfortunately,the toilet was clogged.  Jamie called down to the front desk to let them know and was told that they would send someone up. I still had to take a shower before dinner (lots of sunscreen to wash off, etc.) so, of course, I was waiting for someone to come up before I hopped in the shower. About a half an hour to 45 minutes later, no one had shown up, so Jamie called again. They said, ‘Oh, no one has come? We’ll send someone right up.’ Around 7:40, I decided that I needed to take a shower regardless of what was in the toilet. As I was about to step in, the doorbell rang. Jamie told they guy that I was in the shower so he’d take care of the problem and bring the plunger back. To not drag out this story any longer, basically, we were late for our reservation because I was getting ready.

That's just a part of the issues that we had, but we had a great time, just the same.

May was basically uneventful.  From what I can remember now, so was June (until the 3rd week).  On June 24th, we left Burlington for Colorado to meet my nephew and support my sister while she was doing the MS Bike Ride in from Denver-Fort Collins-Denver.  Amazing!  So proud of my seester!  150 MILES!  Although we had a terrific time, it was by no means relaxing :)  Hanging with such an active 15 month old takes a lot of energy.  Here are some photos of Jack from our trip:

I think that is a good point to end it, for now, but this will certainly be continued,

4.19.11

It's been about a month since I've posted.  I know if I get out of the habit, it will only get harder to keep it up.  So, this will be brief.

I partictipated in the MS Walk on April 9th.  Unbelievably, I was able to raise over $6,000 this year.  Not as much as last year, but more than my goal.  And, I walked all 3 miles.

Tonight, Jamie and I went out to dinner with my parents at Three Tomatoes in Williston for my birthday...


k...sorry that's it...I'll try to update more soon.

3.26.11

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.

http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm199872.htm

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.

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.

http://my.clevelandclinic.org/disorders/multiple_sclerosis/hic_bladder_and_bowel_dysfunction_in_multiple_sclerosis.aspx

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
eHow.com http://www.ehow.com/about_5340874_ms-memory-problems.html#ixzz1GouxTsZS

Depression

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.

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).

http://www.allaboutvision.com/conditions/nystagmus.htm#ixzz1GiKvIAZn

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.

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.

http://www.sharedsolutions.com/Get-Answers/copaxonefaqs.aspx

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...

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)