Wednesday, May 12, 2010
Over 22 years I saw patient after patient in various stages of MS. Each situation was different, even though most shared a lot of the same symptoms. A couple of years before I was diagnosed, our home health agency began doing teaching for new Copaxone patients. I traveled across two counties teaching patients how to give themselves Copaxone injections. Ironic I know! I learned a lot about the disease during that time. Even knowing all the signs and symptoms, I, for whatever reason, ignored or wrote off my own multitude of symptoms. It took trip to the emergency room with chest, neck, and face pain, coupled with the persistence of my family doctor, to finally make the diagnosis, and make me believe it. In less than a year my vision started to go, leaving me legally blind, and my balance went out the window. All the professional knowledge which I prided myself in having, went out that window too. No words could describe the sheer terror and panic that engulfed my mind when the final diagnosis was presented. Suddenly all the previous episodes of so called "vertigo", extreme fatigue, pain in my hands and feet, headaches, and depression, started to make sense. It was way to easy to write it off to being obese, diabetic and stressed. The graphic images, burned into my head, of all the bad scenarios I had ever seen, came crashing down on me like a tidal wave. I substituted my face on each scarred and twisted body I had ever tried to comfort. The looks on the faces of the family members, as they watched their loved ones wither away, was something I could not stand for my family to bear. I did not want to be a burden on their lives. I did not want to be trapped inside my body and not be able to communicate. I did not want anyone to wipe my butt. I did not want anyone to dress me. I did not want this. I cried out to God, I asked him why. He did not answer..., at least not then. I wanted to just go away, close my eyes and disappear. I begged God to take me. He didn't... and I thank him now.
Wednesday, November 25, 2009
Saturday, August 29, 2009
Advanced Nerve Cell System Could Help Cure Diabetic Neuropathy, Related Diseases
ScienceDaily (2009-06-29) -- Researchers have created the first lab-grown motor nerves that are insulated and organized the same way they are in the body. The group's model system could dramatically improve understanding of the causes of myelin-related conditions such as multiple sclerosis, diabetic neuropathy and Guillian-Barré syndrome, potentially enabling the discovery and testing of new drug therapies. ... > read full article
Multiple Sclerosis Successfully Reversed In Mice: New Immune-suppressing Treatment Forces The Disease Into Remission
ScienceDaily (2009-08-12) -- A new experimental treatment for multiple sclerosis completely reverses the devastating autoimmune disorder in mice, and might work exactly the same way in humans, say researchers in Canada. ... > read full article
Monday, September 29, 2008
This is what I know right now. Its not much.
Keepin my fingers crossed!
Thursday, July 17, 2008
No I haven't fallen off the face of the earth. Just seems like it sometimes. We got great news yesterday! Amanda is having a baby! She's really excited and so are we! We are hoping to have our little bundle here in early 2009. Gary's doing better, but still is not 100%. He still has more tests scheduled at UAB. The doctor wants to do Evoked Potentials Testing before he completely rules out MS. He believes he has had a Stroke. We will not really know for sure until all the tests are final. My Birthday came and went, and My grandmother died on July 9th, 2 days before she would have been 89 years old. Dementia had taken a tole on her mind, and Kidney infections, and pneumonia her body. She was my last living grandparent. She was buried on July 12th, in Boaz, Alabama, where she was born. I will miss her, but wouldn't call her back here in the condition she was in. I know she is in a better place now. I hope someday, scientists can unlock then mystery of all diseases of the brain. Until then we do the best we can and pray a lot.
Wednesday, June 18, 2008
Those who know Gary and I, know that Gary was in the hospital and has been faced with some potentially serious health issues, and I am recovering from a couple of surgeries. Finding time to add to a blog has been hard. We have made time to rejoice in the Lord. Our hearts are glad, and we rest in his hope. I want to thank all those who have sent prayers up in our behalf. We sincerely appreciate all the calls, cards, visits and prayers.
We now wait for Gary's appointment at UAB with the Neurologist, in July. I recently heard someone say, going to UAB was like "Going to Mecca". I don't know about that, but it is a process, and it is the best choice when faced with serious illness, for over all quality care.
On a positive note, Gary's facial paralysis is almost completely resolved, and he seems to feel some better each day. A trip to the UAB ER last week, got him medications for the headaches, that do not make him just sleep. He returned to work Monday. He is exhausted each evening, but won't yield to it.
When you hope for the best diagnosis, MS or Strokes, which to you choose? Thank God, we don't choose. We will have to leave that to the only one who is in control. Still, we can't help but wonder. And calling the situation a coincidence is an understatement.
While researching "Bells Palsy" and again reading everything I can find on MS, I am learning more about both conditions. The Internet is an amazing tool when used for research. It is also full of a lot of junk. Sorting through the junk to find the small nuggets of truth is a time consuming process to say the least. I feel for the newly MS diagnosed people who have no medical knowledge base, trying to find and understand their disease. The main MS sites are great for the basic info, and the medical journals are great if you can understand them. The message boards and chat rooms are a dangerous web of misinformation and emotions. There a lot of folks posting their opinions as fact. Looking at the disease from a nursing standpoint, we are taught to look at the objective facts. Life, however is not objective, it is subjective. It is subjective to every part of a person's being; emotions, environmental, spiritual, financial, socioeconomic, interpersonal, ect. It has been my experience that just because the facts indicate one thing, there is always more to each individual. I try not to give a lot of advice. (quit laughing, I said, "I Try!") My strongest advice is to get multiple opinions. You know your body best, if something is not right, don't ignore it. Do your homework, talk with your physician as an educated patient, or find someone you trust to be with you. Ask questions, expect answers, and pray for God to guide you. The medical world is not unlike an abyss to the patient who doesn't know what is going on. Be careful not to get sucked in! Believe me it can happen to the best of us!
Monday, May 19, 2008
(AP) -- Breast cancer patients with low levels of vitamin D were much more likely to die of the disease or have it spread than patients getting enough of the nutrient, a study found -- adding to evidence the "sunshine vitamin" has anti-cancer benefits.
The results are sure to renew arguments about whether a little more sunshine is a good thing.
The skin makes vitamin D from ultraviolet light. Too much sunlight can raise the risk of skin cancer, but small amounts -- 15 minutes or so a few times a week without sunscreen -- may be beneficial, many doctors believe.
While the vitamin is found in certain foods and supplements, most don't contain the best form, D-3, and have only a modest effect on blood levels of the nutrient. That's what matters, the Canadian study found.
Only 24 percent of women in the study had sufficient blood levels of D at the time they their breast cancer was diagnosed. Those who were deficient were nearly twice as likely to have their cancer recur or spread over the next 10 years, and 73 percent more likely to die of the disease.
National Institutes of Health: Vitamin D facts
American Society of Clinical Oncologists: 2008 meeting
"These are pretty big differences," said study leader Dr. Pamela Goodwin of Mount Sinai Hospital in Toronto. "It's the first time that vitamin D has been linked to breast cancer progression."
But people shouldn't start downing supplements, she warned. Experts don't agree on how much vitamin D people need or the best way to get it, and too much can be harmful. They also don't know whether getting more vitamin D can help when someone already has cancer.
"We have no idea whether correcting a vitamin D deficiency will in any way alter these outcomes," said Dr. Julie Gralow, a cancer specialist at the University of Washington in Seattle.
The study was released Thursday by the American Society of Clinical Oncology and will be presented at the group's annual meeting later this month.
Lots of earlier research suggests vitamin D may help prevent prostate, breast and especially colon cancer. In lab and animal tests, vitamin D stifles abnormal cell growth, curbs formation of blood vessels that feed tumors and has many other anti-cancer effects.
Other evidence: People who live in northern regions of the world have higher cancer rates than those living closer to the equator, possibly because of less sunshine and vitamin D.
The Canadian researchers wanted to see whether it made a difference in survival. They took blood from 512 women at three University of Toronto hospitals between 1989 and 1995, when the women's early stage breast cancer was diagnosed.
A decade later, 83 percent of those who had had adequate vitamin D blood levels were alive without extensive spread of their cancer, versus 79 percent of those whose vitamin D levels were insufficient and 69 percent of those who were deficient, as defined by widely used medical standards for measuring intake.
One red flag: The few women with the very highest levels of vitamin D seemed to have worse survival.
Though the study was too small and those results were not conclusive, "there may be an optimal level of vitamin D in women with breast cancer and it may be possible to take too much," Goodwin said.
The federal government says up to 2,000 international units of vitamin D a day seems OK. Taking 800 units per day will, on average, raise blood levels to the middle of the range that seems best for bone and general health, Goodwin said.
Vitamin D is in salmon and other oily fish, and milk is routinely fortified with it, but dietary sources account for little of the amount of D circulating in the blood, experts say.
"It's very hard to make a recommendation" because how much difference a supplement makes depends on someone's baseline level, which also can be affected by sunlight, skin type and time of year, she explained.
Doctors do suggest breast cancer patients get their vitamin D levels checked to see whether they are deficient. The simple blood test is available in many hospitals and labs for about $25, Goodwin said.
Dr. Nancy Davidson, a Johns Hopkins University cancer specialist who is president of the oncology society, said those tests are growing in popularity, even in ordinary medical care.
MayoClinic.com: Breast cancer
"Rightly or wrongly, I'm increasingly seeing physicians who are measuring this," she said.
The Canadian study was paid for by the Breast Cancer Research Foundation in New York, established by cosmetics magnate Evelyn Lauder.
"It's a very provocative paper. It's confirmatory of a tremendous amount of evidence that vitamin D is an important component of health," said Dr. Larry Norton, chief of breast cancer programs at Memorial Sloan-Kettering Cancer Center in New York and a medical adviser to the foundation.
Breast cancer is the most common cancer in women. About 184,450 cases and 40,930 deaths from the disease are expected in the United States this year
Wednesday, May 7, 2008
Thou wilt show me the path of life: in thy presence is fullness of joy; at thy right hand there are pleasures for
Hold up my goings in thy paths, that my footsteps slip not.
Whatever path you are on, no matter how steep, how overgrown, how crooked, God is always there. He will help us stay on the path that leads to him, if we believe, trust and call on him.
Enjoy your journey today, keep focused on the one true goal!
Friday, April 18, 2008
Thursday, April 10, 2008
I finally found a picture that illustrates how I felt yesterday. Completely wore out. It seems there is a pattern to my fatigue. One day I do a good bit. The next, I feel like I am carrying a load of bricks on my shoulders and very sleepy. I think my battery is not getting a full charge sometimes! But I did get my closet somewhat cleaned out. I till have several more to work on. (And a storage building). One day at a time, one closet at a time. One thing I know the days I sit and do nothing. It is hard to get going the next day. Its sorta like cycles or rhythms, the way my energy levels peak and dip. I am O.K. with that. If I can still climb a mountain on Monday, I'll be happy to stay in the valley on Tuesday. I know where ever I am, so is my Lord! I hope you all have more mountains than valleys!
Wednesday, April 2, 2008
I want to start this post by giving you the definition of the words Patience and Patient.
pa·tient (p³"sh…nt) adj. 1. Bearing or enduring pain, difficulty, provocation, or annoyance with calmness. 2. Marked by or exhibiting calm endurance of pain, difficulty, provocation, or annoyance. 3. Tolerant; understanding. 4. Persevering; constant. 5. Capable of calmly awaiting an outcome or a result; not hasty or impulsive. 6. Capable of bearing or enduring pain, difficulty, provocation, or annoyance. --pa·tient n. 1. One who receives medical attention, care, or treatment. 2. Archaic. One who suffers. --pa"tient·ly adv.
pa·tience (p³"sh…ns) n. 1. The capacity, quality, or fact of being patient.
I am the first one to admit, I have very little patience in a lot of areas. I tend not to endure provocation or annoyance calmly. I have been guilty of not calmly awaiting an outcome. On the other hand I am persevering constant, and I think I do have a pretty high pain tolerance. My inability to wait calmly for an outcome is not a new problem for me. Mother even said that she couldn't even feed me fast enough as an infant. I also know I have not shown enough patience with my kids and my husband. When I was working as a nurse, I would say, "I may have a lot of patients, but I don't have a lot of patience." I admit, I never had enough patience with those I supervised. I think this was partially due to my own issues with wanting to everything perfectly. I have been labeled a "control freak". O.K. fine, I have been called worse, believe me. Being a control freak extraordinaire, is difficult to say the least when a disease such as MS, comes into your world. I have had to work really hard to separate what you can and can't control. There is nothing sure or constant about MS, the current treatments, the prognosis, or the development of treatments. Sometimes the process of health care in general will try the patience of the most tolerant understanding person. Some of the things that pull my chain are: Filling out 10 different forms with the same questions on each one, answering the same questions from 10 different people. Having an appointment for 9:00AM and not hearing your name called until 10:00AM, and not seeing a doctor until 11:00AM, calling the doctors office and getting the voice mail loop, with the return call coming 2 days later, if it comes at all. I won't even go to the subject of the emergency room. Having been on the delivery end of health care, I understand how things happen, bureaucracy interferes, and emergencies take precedence. As a patient, I feel the frustration of being in the system, waiting for help. The definition of patient, thusly, is very true: "One who receives medical attention, care, or treatment. 2. Archaic. One who suffers." I have a different perspective on health care now, being an "impatient" patient. Again, I say, I love progress, not the process. I am my own worst critic. I can almost chronologiclly list all the times when I displayed less than patience with those in my life. (even though I sometimes can't remember what I ate for breakfast). I can not go back and change the things in my life that I regret or would have done differently. I know however, that with the Lord's guidance, prayer and really trying to rewire my thinking, I will someday be a more patient person and a more "patient" patient.
Tuesday, April 1, 2008
Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find REST unto your souls. For my yoke is easy, and my burden is light.
Sunday, March 30, 2008
My voice shalt thou hear in the MORNING, O LORD; in the MORNING will I direct my prayer unto thee, and will look up.
Cause me to hear thy lovingkindness in the MORNING; for in thee do I trust: cause me to know the way wherein I should walk; for I lift up my soul unto thee.
I was searching scripture tonight and praying. I have a lot on my mind tonight. I face a new road tomorrow. Tomorrow, I go for my first visit at the Multiple Sclerosis Clinic at UAB. I know I will be faced with decisions and a whole lot of questions, tests, and, again have to recite my complete medical history to at least three separate people. That is all after fighting Birmingham traffic, finding a place to park in the Kirklin Clinic complex, and walking a mile or so before actually getting to the clinic.
I look forward to the progress, but not the process.
In the face of so much uncertainty, the one thing I know for certain, is I can count on the Lord to lead my paths, and "cause me to know the way". I trust him, and I know if I "lift up my soul" to him, He will always lift me up!
I hope everyone has a Wonderful Morning!
Saturday, March 29, 2008
When you have health problems, you tend to be even more cautious when thinking about the future. Multiple Sclerosis' progressive nature definitely stimulates the thought process when you get the diagnosis. Looking at others with the same diagnosis, in various stages. Fear of the unknown, Not to mention how the disease makes you feel. The fatigue, pain and, (often times), depression, doesn't help matters. Sometimes it is very hard to realistically see good times ahead. The future may not always look bright to people with MS. One thing I am trying to do, to combat this problem in my own life, is to begin saying, "I am recovering from MS", not, "I have MS". I am tired of claiming the disease and letting it claim me. I do not want to be a victim, I want to be a victor. I hope speaking positive, will result in the positive. The future may hold challenges, but it can be bright, even in the face of the unknown. I pray for strength, for us all, to look ahead with a positive outlook, and face the future head on!
Have A Great Day!
Friday, March 28, 2008
Although not approved by the FDA, there is a treatment for the symptoms of Multiple Sclerosis, that has been proven to be effective for control of symptoms. There have not been "double blind" studies, or trials, and no drug company can sell it. It is simply Love. I know this for a fact. Recently, while hospitalized with a pretty significant exacerbation, I again received Love treatments. They were administered by my family and friends. They came in the shape of, prayers, phone calls, visits, hugs, smiles, kisses, and genuine concern for me. I felt better with each dose of this treatment. My husband and my daughters were the primary caregivers. They followed a strict schedule with my doses. I was surprised on day two, of my hospital stay, to find my oldest grandson, coming through the door of my hospital room, grinning from ear to ear. He had come to give me a treatment. He jumped on to my bed and covered me in what we call the blanket hug, followed by sweet little boy kisses. He scanned my body, being told I was sick, he had to look over the situation. He was not phased by the I.V.s nor the pale color of my face. He was there to do what he does best. Give unconditional love. He had brought an extra dose from his little brother who couldn't come. I am here to tell you, no steroids, no medication on this earth, can come close to the therapeutic benefits of this single dose of love. The best part is that it is free. And I can get it anytime I want it. No insurance, no shots, no I.V.s. Now I know there is a need for medication. I wouldn't be a good nurse if I said there wasn't. But for just a minute, consider the unconditional love of a Grandson. The therapeutic value of love is definitely real. Family support, understanding, and love, is by far the best co-therapy treatment, I have found. This has been true throughout my career, and applies to all diseases. So if it is concluded that Love and Family support is theraputic and contributes to healing. Then for a minute consider Gods' love for us by giving us his most precious Love, his son, Jesus Christ. His message of Love is the same today, as it was over two thousand years ago. His word is comfort, his message is peace. His Love is ours! Think about how much you impact your family, day to day. We rely on each other to support us and hold us up. What you do and say counts. Share love where ever you can, as much as you can. The old rock song, "love hurts", and the old saying, "you only hurt the ones you love", doesn't have to be true. Love Does Not Hurt!
Have A Great Day!
Thursday, March 27, 2008
I want to say good morning and how happy I am today to be alive. I know it is by the grace of God, that I am here and able to share with all of you each day. I praise him in the good times and the bad. I pray for everyone to have Gods' will upon their lives. Just dropping a short line today. I tend to get "wordy" and long winded from time to time. Forgive my rambling. I hope everyone who reads this today, has a great day! Later, MamaG
Tuesday, March 25, 2008
Multiple sclerosis (MS) is a chronic, potentially debilitating disease that affects your central nervous system, which is made up of your brain and spinal cord. Multiple sclerosis is widely believed to be an autoimmune disease, a condition in which your immune system attacks components of your body as if they're foreign.
In multiple sclerosis, the body mistakenly directs antibodies and white blood cells against proteins in the myelin sheath, a fatty substance that insulates nerve fibers in your brain and spinal cord. This results in inflammation and injury to the sheath and ultimately to the nerves that it surrounds. The result may be multiple areas of scarring (sclerosis). Eventually, this damage can slow or block the nerve signals that control muscle coordination, strength, sensation and vision.
Multiple sclerosis affects an estimated 300,000 people in the United States and probably more than 1 million people around the world — including twice as many women as men. Most people experience their first signs or symptoms between ages 20 and 40.
Multiple sclerosis is unpredictable and varies in severity. In some people, multiple sclerosis is a mild illness, but it can lead to permanent disability in others. Treatments can modify the course of the disease and relieve symptoms.
Signs and symptoms
Signs and symptoms of multiple sclerosis vary widely, depending on the location of affected nerve fibers. Multiple sclerosis symptoms may include:
- Numbness or weakness in one or more limbs, which typically occurs on one side of your body at a time or the bottom half of your body
- Partial or complete loss of vision, usually in one eye at a time, often with pain during eye movement
- Double vision or blurring of vision
- Tingling or pain in parts of your body
- Electric-shock sensations that occur with certain head movements
- Tremor, lack of coordination or unsteady gait
- In some cases, people with multiple sclerosis may also develop muscle stiffness or spasticity, slurred speech, paralysis, or problems with bladder, bowel or sexual function. Mental changes, such as forgetfulness or difficulties with concentration, also may occur.
Causes and Types of Multiple Sclerosis
In people with multiple sclerosis, the immune system mistakenly destroys the cells that produce the myelin sheath. As a result, myelin becomes inflamed and swollen and detaches from the nerve fibers. The detached myelin may eventually be destroyed. Firm or hardened (sclerosed) patches of scar tissue form over the fibers. When nerve impulses reach a damaged area, some impulses are blocked or delayed from traveling to or from your brain. Ultimately, this process leads to degeneration of the nerves themselves, which likely accounts for the permanent disabilities that may develop in MS.
Doctors and researchers don't understand what causes this autoimmune reaction. Something seems to trigger the condition in susceptible people.
Genetic factors may make certain people more susceptible to multiple sclerosis. But genetic susceptibility is only part of the explanation. A number of researchers believe the disorder is related to a protein that mimics the myelin protein, which may be introduced into the body by a virus. Other researchers believe that the immune system overreacts toward myelin proteins in people with MS, which leads to an abnormal tendency to develop autoimmune disease.
A period of disease activity (exacerbation) may be triggered by a viral infection, such as a cold or flu, or by changes in the immune system during the first six months following a pregnancy.
Patterns of MS Whatever the multiple sclerosis cause or trigger, the disease occurs in four main patterns:
- Relapsing remitting. This type of multiple sclerosis is characterized by clearly defined flare-ups, followed by periods of remission. The flare-ups typically appear suddenly, last a few weeks or months, and then gradually disappear. Most people with MS have this form at the time of diagnosis.
- Primary progressive. People with this less common form of multiple sclerosis experience a gradual decline, without periods of remission. People with this form of MS are usually older than 40 when signs or symptoms begin.
- Secondary progressive. More than half the people with relapsing remitting MS eventually enter a stage of continuous deterioration referred to as secondary progressive MS. Sudden relapses may occur, superimposed upon the continuous deterioration that characterizes this type of multiple sclerosis.
- Progressive relapsing. This is primary progressive MS with the addition of sudden episodes of new symptoms or worsened existing ones. This form is relatively uncommon.
Treatments For MS
Medications for relapsing MSIf you have a relapsing form of the disease, your doctor may recommend treatment with disease-modifying medications early in the course of disease. You can't take these medications if you're pregnant or may become pregnant. These medications for multiple sclerosis treatment include:
- Beta interferons. Interferon beta-1b (Betaseron) and interferon beta-1a (Avonex, Rebif) are genetically engineered copies of proteins that occur naturally in your body. They help fight viral infection and regulate your immune system.
If you use Betaseron, you inject yourself under your skin (subcutaneously) every other day. If you use Rebif, you inject yourself subcutaneously three times a week. You self-inject Avonex into your muscle (intramuscularly) once a week. These medications reduce but don't eliminate flare-ups of multiple sclerosis. It's uncertain which of their many actions lead to a reduction in disease activity and what their long-term benefits are. Beta interferons aren't used in combination with one another; only one of these medications is used at a time.
The Food and Drug Administration (FDA) has approved beta interferons only for people with relapsing forms of MS who can still walk. Beta interferons don't reverse damage and haven't been proved to significantly alter long-term development of permanent disability. Some people develop antibodies to beta interferons, which may make them less effective. Other people can't tolerate the side effects, which may include symptoms similar to those of the flu (influenza).
Doctors generally recommend beta interferons for people who have more than one attack of MS a year and for those who don't recover well from flare-ups. The treatment may also be used for people who have a significant buildup of new lesions as seen on an MRI scan, even when there may not be major new symptoms of disease activity.
The FDA has approved the use of several beta interferons for people who've experienced a single attack that suggests multiple sclerosis, and who may be at risk of future attacks and developing definite MS. Risk of MS may also be suggested when an MRI scan of the brain shows lesions that predict a high risk of conversion to definite MS. Controversy exists as to whether these people should take these expensive and often inconvenient drugs for indefinite periods, especially because some people do well both in the short term and long term without therapy. Some doctors prefer to observe people at high risk with follow-up examinations and MRI scans to document any ongoing inflammatory disease activity before recommending long-term therapies such as beta interferon.
- Glatiramer (Copaxone). This medication is an alternative to beta interferons if you have relapsing remitting MS. Doctors believe that glatiramer works by blocking your immune system's attack on myelin. You must inject glatiramer subcutaneously once daily. Side effects may include flushing and shortness of breath after injection.
- Natalizumab (Tysabri). This drug is administered intravenously once a month. It works by blocking the attachment of immune cells to brain blood vessels — a necessary step for immune cells to cross into the brain — thus reducing the immune cells' inflammatory action on brain nerve cells.
During clinical trials, this drug was shown to significantly reduce the frequency of attacks in people with relapsing MS. After receiving FDA approval, however, the drug was withdrawn from the market because of reports from three people who developed a rare, often fatal, brain disorder called progressive multifocal leukoencephalopathy.
In 2006, after reconsideration of the drug's benefits for people with multiple sclerosis, the FDA agreed to allow the drug to be marketed again under specific conditions. Chief among these conditions is the requirement that doctors, pharmacists and patients be involved in a special distribution program known as TOUCH in order to prescribe, dispense or receive the drug. Because of the drug's risks, it's generally recommended only for people whose condition hasn't responded to other forms of MS therapy. Furthermore, there has been no study direct comparing natalizumab to existing treatments to prove whether it's superior to existing treatments.
- Other medications.
- Mitoxantrone (Novantrone) is a chemotherapy drug used for many cancers. This drug is also FDA-approved for treatment of aggressive forms of relapsing remitting MS, as well as certain forms of progressive MS. It's given intravenously, typically every three months.
Mitoxantrone may cause serious side effects, such as heart damage, after long-term use, so it's typically not used for longer than two to three years. And it's typically reserved for people with severe attacks or rapidly advancing disease who don't respond to other treatments. Close monitoring is critical for anyone on this medication.
Some doctors are also prescribing other chemotherapy drugs, such as
- cyclophosphamide (Cytoxan), for people with severe, rapidly progressing MS. However, these medications aren't FDA-approved for treatment of MS.
Medications for progressive MSSome medications may relieve symptoms of progressive MS. They include:
- Corticosteroids. Doctors most often prescribe short courses of oral or intravenous corticosteroids to reduce inflammation in nerve tissue and to shorten the duration of flare-ups. Prolonged use of these medications, however, may cause side effects, such as osteoporosis and high blood pressure (hypertension), and the benefit of long-term therapy in multiple sclerosis isn't established.
- Muscle relaxants. Baclofen (Lioresal) and tizanidine (Zanaflex) are oral treatments for muscle spasticity. If you have multiple sclerosis, you may experience muscle stiffening or spasms, particularly in your legs, which can be painful and uncontrollable. This typically occurs in people with persisting or progressive weakness of their legs. Baclofen may temporarily increase weakness in your legs. Tizanidine controls muscle spasms without causing your legs to feel weak, but can be associated with drowsiness or a dry mouth.
- Medications to reduce fatigue. To help combat fatigue, your doctor may prescribe an antidepressant medication, the antiviral drug amantadine (Symmetrel) or a medication for narcolepsy called modafinil (Provigil). All drugs prescribed for this purpose appear to work because of their stimulant properties. One study has showed that aspirin treatment may be effective in controlling MS-related fatigue; further research is planned to address the benefits of aspirin on fatigue.
- Other medications. Many medications are used for the muscle stiffness, depression, pain and bladder control problems associated with multiple sclerosis. Drugs for arthritis and medications that suppress the immune system may slow MS in some cases.
MS treatments other than medicationsIn addition to medications, these treatments also may be helpful:
- Physical and occupational therapy. A physical or occupational therapist can teach you strengthening exercises and show you how to use devices that can ease the performance of daily tasks. Therapists are usually supervised by doctors (physiatrists) who advise and coordinate the therapy that you might receive. Therapists can assist you in finding optimal mobility assistance devices such as canes, wheelchairs and motorized scooters. These devices and exercises can help preserve your independence.
- Counseling. Individual or group therapy may help you cope with multiple sclerosis and relieve emotional stress. Your family members or caregivers also may benefit from seeing a counselor.
- Plasma exchange (plasmapheresis). Plasma exchange may help restore neurological function in people with sudden severe attacks of MS-related disability who don't respond to high doses of steroid treatment. This procedure involves removing some of your blood and mechanically separating the blood cells from the fluid (plasma). Your blood cells then are mixed with a replacement solution, typically albumin, or a synthetic fluid with properties like plasma. The solution with your blood is then returned to your body.
Replacing your plasma may dilute the activity of the destructive factors in your immune system, including antibodies that attack myelin, and help you to recover. Plasma exchange has no proven benefit beyond three months from the onset of the neurological symptoms.
I found alot of comfort in the scripture and thoughts here.
The Breath of Life
By Regina Rosser
Prayer Praise and Glory to the Lord
All Scriptures from the King James Bible:
- Ge 2:7 "And the LORD God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul."
I began to think about all the last breaths I have seen in my lifetime. I will never forget the first time I saw someone take their last breath. Frankly, I will never forget any of the times I watched someone take their last breath, and there have been many. Then I thought how wonderful it was to see a baby take its first breath. And again, I have seen a few. I was blessed to be in the room when my oldest grandson took his first breath. He was so beautiful and new, so innocent and perfect. Words can't describe the love and joy I felt. It was at this moment I think I really appreciated how "fragile" and precious a breath is. I remember wondering what kind of man my grandson would grow up to be. I prayed to the Lord that day, that he would grow up to be strong man that would walk in the way of the Lord. He who gave us breath, wants us to walk in his way too.
"breath of life" The Bible tells us that The Lord formed man from dust and breathed in his nostrils the breath of life and man became a living soul. I can only imagine the joy he felt watching Adams' first breath; creating a "soul" in his own image, so perfect and clean, so innocent and new. I know all who hear these words, either have children or have parents. Those who have children, think back to when your child took their first breath; when a new soul came into the world that you were responsible for creating. Remember the love you felt? I want you to know today, that the Father in heaven loves us more than that, more than our minds can comprehend. He gave us the breath of life. I have witnessed man try to give the breath of life many times. We use mouth to mouth recesitation, respirators and other artificial means to breath for people. These means often restore life to the physical body, and sometimes they don't. God has given men ever growing books of knowledge and power to heal the human body. I am here to tell you today, that only the knowledge from the Holy Bible, the power of The Holy Spirit, the love of Jesus Christ, and the breath of life given from the Lord, will revive a soul.
What He Gave us with his Breath
"...a living soul." There has been a centuries old, ongoing hunt for the "soul". Being in the medical profession, I have seen many people opened up on operating tables, from head to toe, without ever seeing physical evidence of the soul. I have read more anatomy and physiology books than I care to think about. No where have I seen mention of the soul. So what is the soul and where is it? Well the dictionary gives it this definition: soul (s½l) n 2. The spiritual nature of human beings, regarded as immortal, separable from the body at death, and susceptible to happiness or misery in a future state. 6. The central or integral part; the vital core.
Men have written books on their theories of where the soul resides. Scholars have debated it. Like the dictionary says, I believe it is the vital core of a human being. Otherwise we would have remained dust. The soul is our spiritual nature, immortal, and does separate from the body at death. It is susceptible to great happiness or misery. There is only one part of this definition in which I disagree. Its the part that says "in a future state". I believe our souls can experience great happiness or great misery, right now, depending on the choices we make. Now that we have defined the Soul. Where is it? Still no one has found it? I think I know where it is. I think it is the place in the middle of your chest that sinks in when you feel the deepest of emotions. It's where you feel it, when you get that "gut feeling", or when the "hair on the back of your neck stands up". I think it's our soul that knows we are not alone, when there is no one around. I believe the soul is where the spirit of the Lord resides; in all of us. Its where his breath stayed when he blew in Adams nostrils. I believe his love lives in our souls and wouldn't that make it the "cental or integral part; the vital core."? Could any of us live without love; the love of our families, the love of our friends?
"Love" Joh 15:11 "These things have I spoken unto you, that my joy might remain in you, and that your joy might be full. Joh 15:12 This is my commandment, That ye love one another, as I have loved you."
Hearing or reading the words of Jesus Christ, always makes the hairs on the back of my neck stand up. His words touch my soul, the place I believe we store our love. The ministry of Jesus was based solely on the concept of love. He taught of love, and most importantly he showed it to everyone he encountered. He was the voice of truth, and the breath of life to all those who heard him and believed. Almost two thousand years have passed and Jesus' teachings are still being heard all over the world. Still it seems sometimes, the world now, just like then, just doesn't get it. Love is not such a hard concept to understand. The dictionary says: love (l¾v) n. 1. A deep, tender, ineffable feeling of affection and solicitude toward a person, such as that arising from kinship, recognition of attractive qualities, or a sense of underlying oneness.
I really like the last part of that definition; "a sense of underlying oneness." Jesus fulfilled the ultimate act of love through his life, death and resurrection. His love showed us an example of oneness to guide our lives, the oneness of the Father, the son and the Holy Ghost. He breathes life giving love into our souls if we accept it freely.
After the resurrection Jesus appeared to the disciples and spoke these words: Joh 20:21 ... Peace be unto you: as my Father hath sent me, even so send I you. Joh 20:22 And when he had said this, he breathed on them, and saith unto them, Receive ye the Holy Ghost...
He breathed on them and they received the Holy Ghost, the breath of life. This breath that he gave to his people was fragile and powerful at the same time. His power is supreme. It is how we handle his gift of life, that makes it fragile. If we take this fragile breath deep inside us, to that vital core, shield it, grow it, love it, and worship it will sustain us. It will give us great joy. It will fill our souls. As the Body of Christ, we must share this breath, and joy, with all that will listen and hear.
Have you allowed Jesus to share his love, his oneness, to fill your soul with the breath of life?
Have you shared his breath of life with anyone today?
O.K., here we go. First, welcome to my Blog. This is my first attempt at documenting my "Life and Loves, living with Multiple Sclerosis." So much for privacy! First I want to say, as a nurse of many years, I have cared for and cared about many people who had M.S.. I always said, I would rather have most any disease, than have M.S. I have seen the devastation and the pain that this disease inflicts on the patient and their families. When I was diagnosed, the first thing out of the neurologists' mouth was, "Now there is no cure for M.S.", followed by, "There are treatments, but nothing will totally prevent the progression of M.S." That is not what you want to hear of course, but these are the facts. I have never said, "Why Me?" Why not me, Why anyone?
My Journey to the M.S. theme park, started before I ever knew I was in the park, much less on the ride. No pun intended. I was told at the age of thirty, that I had a stroke. I had CT scans and MRIs, saw a neurologist, and was told the stroke was related to my diabetes. Of course the diabetes was related to my obesity, and having two babies. Long story short, I was told, that I was too large, (over 300lbs), to have a proper MRI. I was never given the proper sequence of tests to diagnose M.S.. Again, in 1999, after having a focal, petimal seizure, I was scanned, and again told it was a type of stroke typical of diabetics. I remember undergoing an EEG, and other tests, but again, never the correct sequence for the correct diagnosis. I now know this is very typical for patients with M.S. In 2002, I underwent gastric bypass surgery, and lost over 200 lbs. I had excellent results, with the exception of being anemic. I felt great except for transient periods of weakness, which I blamed on the anemia. In late 2004, I began experiencing pain, in my left arm, side of the face and neck. It was excruciating. My husband took me to the emergency room in our home town. Of course I was worked up for cardiac problems, and admitted to the hospital. I felt really bad. All the cardiac tests were negative. My family doctor wanted to run some more tests. He ordered an MRI of my brain. Now I was small enough to get a good scan. That afternoon, he came into my room and asked me where my husband was. I told him he was at work. My Dad was there visiting with me. I remember the look on my doctors' face was unlike any I had seen before. At least when it concerned me. I remember asking him, "Whats wrong, do I have M.S., or something?" Very quietly, He said, "Yes, I believe you do." He had known me for a long time and knew that this was the last diagnosis I wanted to hear. "Well, that just stinks", I replied. He nodded and didn't say anything. My Dad sorta looked lost. He really didn't know much about the disease, but had lost my Mom to cancer earlier in the year, and the look on the doctors' face said a lot. I remember the images of current and former patients flashing through my mind. I always said, I didn't want to be a burden to my family. The next few weeks were spent with a barrage of tests; more MRIs, lumbar punctures, evoked potentials, ect. All were positive for a diagnosis of Multiple Sclerosis. Some home health solu-medrol infusions, and subsequent management of outrageously high glucose levels, I was feeling better. This was just in time to start the daily Betaseron injections, which my neurologist suggested. This treatment was disastrous for me, to say the least. I had fevers, chills, exaggerated flu symptoms, and "Major" depression. I stopped the injections after about one month. The depression didn't go away. As a matter a fact, it got worse. Much worse. To add to my depression, I began having significant visual disturbances. My next hospital stay came about 6 months after stopping the Betaseron. I was hospitalized to treat the depression, and get me started on an antidepressant. I was not a "happy camper" at this point. The M.S. theme park was definitely not an amusement park. Up to this point, I had continued to work my job as a home health nursing supervisor for two county programs. Let me just say, this is not a low stress job, and I could no longer drive due to optic neuritis, which had left me legally blind. All my doctors recommended that I quit work, and get disability. Well, as most of you know, and I feared, it's not easy to get disability. All I could think, was becoming financially unable to pay the bills, and loosing our home, before I could get on disability. I was wrong. My doctors and I submitted all the paperwork in August, I got my award letter in September, and began getting benefits after the 6 month waiting period. I still don't question the speed, I just thank God. Since then, I have tried taking Copaxone injections. I had terrible local site reactions, leaving softball sized whelps after each injection. These whelps, became hard and painful, and did not go away for several days. I quit the Copaxone after one month. I resolved to leave my prognosis to God, and my treatment; prayer and healthy living.
Well, that was then, this is now. I recently got out of the hospital. I had a major exacerbation of the M.S. symptoms. Complete left side numbness and extreme weakness. I again underwent MRIs, and tests. I also got 3 grams of solu-medrol. Again, sending my blood sugar into orbit. I was actually surprised to find the number of lesions in my brain was "too numerous to count", and the ones on my spinal cord were large and there were several new ones. I thought, "So much for healthy living". But I haven't given up on God. The doctor that saw me in the hospital, recommended I try Tysabri or Novantrone. He and my Doctor agreed, I should go to the M.S. clinic, where Tysabri can be given. So that is where I am now, awaiting an appointment to see the doctors and discuss my treatment.
I have always been one to set goals. Many times, I set them too high, setting myself up for failure. I have really had to work on this over the years. Since my first episode with sickness, in my twenties, I set a life goal. I said I wanted to live long enough to raise my girls, My two beautiful daughters. I did not want to leave them without a mother. My girls are grown now. I am constantly revising my goal, because, I don't think you can ever finish raising your kids. In 1998, I met my wonderful husband, my knight in shining armor. In 1999, I married him. I can't imagine loving someone more than I love him. After a couple of disappointing relationships in my life, I had found happiness. I set a new goal to live a long life with him. This goal is not measurable. There is not a time frame in which to complete it. It is for as long as I live. In 2001, I became a grandmother for the first time. I remember standing next to the bed watching him be born. Of all the babies I had seen birthed, for me this was like the first time. Knowing this was flesh of my flesh, was indescribable. Like all the good feelings in the world, happening all at one time. I set a new goal, to get myself healthy, so I could see him grow up. I proceeded to take control of my health, having Gastric bypass to loose the weight that had contributed to many of my health problems. I watched my baby girl graduate, get married, and start her adult life. In June of 2005 my oldest daughter gave birth again, my second grandson was born. Again, overwhelming joy is the only way to describe this event. I have set new goals, and renewed my vow to stay healthy on each occasion. I used to worry about being, "a burden" to my family. My oldest daughter visited me in the hospital a few years ago, and I said this to her. Her response was very simply, "Mother, don't you realize, we would rather have you as a burden, than not have you at all." This one statement was the most therapeutic treatment I received during this hospital stay. I also rekindled my relationship with the Lord during this time. He has reminded me on several occasions, that he is in control, and he runs the ship, not me. Sometimes, I am a slow learner, and trust has always been hard for me. I like to believe, I can do it all. I can do all things, through, Christ, my Savior. I may start new therapies and treatments, and go through trials, but Christ and prayer are one aspect of my treatment I will never change. I hope this site will be a type of therapy for me too. I don't want it to be seen as a complaint board,"come hear her tell how bad she feels". I do want to share the bad and the good. Maybe someone can relate to my experiences and we can all have a better understanding of ourselves and others.