About.com Multiple Sclerosis

My H1N1 (Swine Flu) Vaccine Experience

Wed, 18 Nov 2009 09:30:16 +0000

I am happy to report that this will be one of the most boring posts that I will write, because my H1N1 vaccine experience was completely and utterly unremarkable.

Last Friday, I took my children in to a local clinic to get their second dose of the H1N1 nasal mist vaccine 28 days after they received their first dose (it is recommended that all children younger than 10 receive 2 doses of H1N1 vaccine to achieve optimal immunity). When I went up to sign them in at the reception desk, I casually asked when they thought that they would be receiving the shot version of the H1N1 vaccine (it is recommended that people with MS NOT receive the nasal mist version of the vaccine, as it contains live virus).

The nurse who was standing there looking at charts responded with a mix of suspicion and defensiveness, as she asked, "Why? Are you pregnant?" She was glaring at my stomach, eyes narrowed, when she asked this. When I responded with a laugh and told her that I was not pregnant, but did have MS, her whole demeanor softened. "You have no idea how mean all these people are being to me," she said. "One man almost hit me today because I told him he didn't qualify for a vaccine at this time."

When I commiserated with her, saying that it must be a nightmare to deal with that all day, she told me that I could have a shot. "After all," she said, "you have MS. You don't need to be worrying about how to get this vaccine, too. Plus, you are being nice to me." With that, she gave me the information sheet, I rolled up my sleeve, and with a complete lack of fanfare, I received my H1N1 shot.

My vaccine was drawn from a multidose vial, meaning it contained a little thimerosal, which I am really not worried about.

I have to say, the discomfort in my arm that day and the next were MUCH less than I had with my seasonal flu shot. I also had very minimal feelings of mild dizziness and "strangeness" afterwards, whereas I felt pretty awful for about 36 hours after getting my seasonal flu shot.

Overall, I am relieved to have gotten the shot. I still have a little cough left over from a respiratory infection that I had in early October, as tends to happen when I get a cough. I take that to mean that I do have a touch of lung dysfunction and am probably at very high risk for pneumonia if I was to catch H1N1.

What about you? Did you get your H1N1 shot? Are you going to? Share your thoughts and experiences in the comments section.

My H1N1 (Swine Flu) Vaccine Experience originally appeared on About.com Multiple Sclerosis on Wednesday, November 18th, 2009 at 09:30:16.

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Multiple Sclerosis and Divorce: Interesting Gender Gap Uncovered

Tue, 17 Nov 2009 14:18:58 +0000

There are all sorts of statistics about divorce among people with chronic illnesses like multiple sclerosis (MS). Although the exact numbers vary, depending on the study, divorce and separation rates are consistently higher in couples where one person has a disability or chronic illness.

A recent study from the Fred Hutchinson Cancer Research Center decided to look a little deeper into the situation and found some pretty amazing things.

Looking at 515 people (about equal numbers of men and women) who had brain tumors, cancer or MS, and were married at the time of their diagnosis, the researchers found that:

11.6% (60) of the participants were divorced or separated within 6 months of diagnosis; however, only 2.9% of the breakups were in couples where the man was the person with the illness, whereas the rate of breakup was 20.8% among affected women
96% of the breakups among people with MS were a situation where the woman was the person living with MS
It was found that the longer that people had been married, the more likely they were to stick together after a diagnosis

What has been your experience since your diagnosis? Has your marriage suffered or grown stronger in the face of MS adversity? Share your story in the comments section below, or tell it here (as well as read about the experiences of others) - Readers Respond: How has MS affected your marriage?

Multiple Sclerosis and Divorce: Interesting Gender Gap Uncovered originally appeared on About.com Multiple Sclerosis on Tuesday, November 17th, 2009 at 14:18:58.

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One of Our Own: A Photo Essay of Multiple Sclerosis

Wed, 11 Nov 2009 10:28:22 +0000

Even though I have never met Patricia Lay Dorsey, I like this woman. A lot.

Ms. Lay Dorsey has been living with primary progressive multiple sclerosis since 1988. Like many of us with MS, the disease not only resulted in physical symptoms, but started to do something even more evil - it made her feel less beautiful and ashamed. Instead of covering up her flaws, she fought back by looking at them more closely through a camera lens. Now she is sharing them with the world and guess what? Those "flaws" are no longer flaws, but elements in a composition, beauty in the way that they reveal this person's soul.

By opening up herself like this, Ms. Lay Dorsey gives us the chance to take a good honest look at ourselves, to not only look beyond the MS, but also to look at our MS straight on. By the end of looking at her photo essay, I can say that I felt calm. I thought about my own MS and felt a little less anger and a little more tolerance with my body that is turning on itself.

I hope others, those living without MS, can take a look at this essay and see what it is in themselves that they need to come to peace with, then take a step towards doing just that. I get the feeling that that is the point of the whole project, really, rather than giving "insight" into what it is like to live with this disease.

As Ms. Lay Dorsey herself says, "People will see us as either terribly inspiring or terribly pathetic. We're either super gimps or just tragic. The fact is we're not either one. We're human beings and we're just living life. Doing the best we can. Everyone has challenges of one kind or another. It just so happens that mine are more visible than others'."

One of Our Own: A Photo Essay of Multiple Sclerosis originally appeared on About.com Multiple Sclerosis on Wednesday, November 11th, 2009 at 10:28:22.

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H1N1 (Swine Flu) and Seasonal Flu Vaccine and Multiple Sclerosis Drugs

Wed, 11 Nov 2009 10:02:13 +0000

As many have read, I am strongly advocating that people with MS get the H1N1 and seasonal flu vaccines, as many of us have decreased lung function that makes us susceptible to pneumonia, which is the biggest risk associated with infection from the H1N1 virus.

In response to my last blog post about the H1N1 vaccine for people with MS, I got the following comment: "I am hoping that the person you are responding to does not take one of the current 5 choices of medicines to help control their MS. As I am sure you are aware they work by keeping the immune system busy and therefore not attacking your own body. If they are on one of these treatments, then yes they do have a weakened immune system."

Well, kind of, but not exactly. I will try to clarify the role of some of the drugs that people with MS might be on and what is means in terms of the H1N1 and seasonal flu vaccines.

Read the full article here: H1N1 (Swine Flu) and Seasonal Flu Vaccine and Multiple Sclerosis Drugs

H1N1 (Swine Flu) and Seasonal Flu Vaccine and Multiple Sclerosis Drugs originally appeared on About.com Multiple Sclerosis on Wednesday, November 11th, 2009 at 10:02:13.

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Q. Am I more susceptible to H1N1 because I have multiple sclerosis?

Wed, 04 Nov 2009 00:01:43 +0000

I recently got the following e-mail: "I have MS and I guess that means that I have a weak immune system because I seem to catch every cold that is going around. Once I get a cold, it turns into something worse and I end up coughing for a long time. Does this mean that I should not get the H1N1 vaccine, because is it dangerous to me with my compromised immune system?"

A. There are a couple of things going on here and I will try to clarify some points:

1. People with MS do NOT have weak or compromised immune systems. Quite the opposite, actually - our immune systems are overactive and are attacking our myelin.

2. It probably seems like you are getting sick more often than most people because of the symptoms that you are experiencing from minor infections. People with MS tend to have decreased lung function. Even people with very little noticeable disability can have lung function that is only 60 to 70% of normal. As a result, even little respiratory bugs can cause us to cough for much longer than someone without MS as these infections "settle in" to cause bronchitis or even pneumonia.

3. You absolutely SHOULD get the H1N1 vaccine. As mentioned, people with MS do not have compromised immune systems (for the record, immunocompromised people should also get the vaccine). The H1N1 virus is very dangerous to anyone who could easily develop pneumonia, which is our big risk factor due to the decreased lung function that I mentioned.

Here are a couple additional points about the H1N1 vaccine for people with MS:

People with MS should NOT get the nasal mist version of the vaccine, as it contains live virus.
If you are concerned about thimerosal, avoid the vaccine that comes from multi-dose vials. The single-dose syringes do NOT contain thimerosal.
Adjuvants are not included in the flu vaccines that are used in the United States.

Q. Am I more susceptible to H1N1 because I have multiple sclerosis? originally appeared on About.com Multiple Sclerosis on Wednesday, November 4th, 2009 at 00:01:43.

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Julie's Low Dose Naltrexone Journal: Month 6

Mon, 02 Nov 2009 17:43:04 +0000

There is bad news and good news to report about my experiences with low dose naltrexone (LDN) to help with my symptoms of multiple sclerosis (MS). As those of you who have been following my LDN journey know, I have relapsing-remitting MS and have been taking Copaxone for over 3 years. I began taking LDN 6 months ago, starting with a 3.0 mg dose, which I increased to 4.5 mg after 3 months.

Here is the bad news: I really don't feel like the LDN at 4.5 mg is helping me much these days. I feel pretty much like I did before I started taking it. I have fatigue that I wake up with and that can really bring me down by about 10 am to a barely functional level, requiring naps to just get through the day. If I exercise, I can make it until about 1:00 in the afternoon before I need a nap. My cognitive issues have really been interfering with my life the past 6 weeks or so and seem to be increasing.

Here is the good news: I am not giving up on LDN.

I heard from some people that increasing to 4.5 mg actually made them feel worse and that going back down seemed to help. I called the pharmacist that has been compounding the LDN for me and he confirmed that many people have had this experience. He said that the biggest problem people noticed when they upped their dose was increased spasticity, but that other symptoms often got worse as well. The pharmacist said people often kept adjusting the dose until they got it "just right," and that for many of the people that he served, 3.5 mg was an optimal dose that was arrived at by trial and error.

I am going to go back down to 3.0 mg and see where that gets me. I actually have already started the process by hacking into my capsules with cuticle scissors and pouring out a third of the powder last night. Not the most scientific way to go about this, but I am a little desperate.

I should say that there have been factors that could have interfered with how I felt overall. I have had several little infections since my daughters started school in August, which culminated in a big respiratory illness requiring antibiotics that kept me sick for about 3 weeks. The weather has been crazy, with differences of 30 degrees from day to day. I have had tight deadlines, followed by periods of calm, interspersed with external demands. In short, my life has been like most other people's - rocky and unpredictable at times.

I will keep everyone updated on how I am doing with my new dose. Has anyone else had the experience of increasing their dose of LDN, then decreasing it with good results? Please let us know in the comment section below.

Read the full articles/blogs:

Low Dose Naltrexone as a Treatment for Multiple Sclerosis

Julie's Low Dose Naltrexone Journal: Preparation

Julie's Low Dose Naltrexone Journal: Days 0 and 1

Julie's Low Dose Naltrexone Journal: Week One

Julie's Low Dose Naltrexone Journal: Month 1

Julie's Low Dose Naltrexone Journal: Month 2.5

Julie's Low Dose Naltrexone Journal: Don't Double Up and Don't Skip Doses

Julie's LDN FAQs: Dose Timing

Julie's Low Dose Naltrexone Journal: Upping the Dose

Julie's Low Dose Naltrexone Journal: Month 4

Julie's Low Dose Naltrexone Journal: Month 5

Julie's Low Dose Naltrexone Journal: Month 6 originally appeared on About.com Multiple Sclerosis on Monday, November 2nd, 2009 at 17:43:04.

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Occupational Therapy for People with Multiple Sclerosis

Tue, 27 Oct 2009 21:35:10 +0000

The first time I ever heard the term "occupational therapy" was when my 6-month-old nephew was having trouble adapting to solid foods, so was sent to an occupational therapist (OT). She prescribed a little schedule for introducing foods in a certain order, showed his mom how to feed him so that he would have the best chance at success and even recommended a certain spoon. The term "occupational therapy" made sense when it was explained to me as help to do the things that "occupy" our lives - eating, grooming, doing leisure activities - basically taking care of our needs and living our lives.

As people with multiple sclerosis (MS), those "occupations" that used to come naturally and effortlessly may start taking a little more effort, then a lot more effort, until eventually we stop doing them or need to rely on others for help.

Occupational therapy can help us keep doing these things for ourselves longer. Not only that, a good therapist can help us streamline things so that they require less of our valuable energy - even when our symptoms may be worse.

Read a little more here about occupational therapy - you may be surprised. In writing these articles, one thing that I wanted to really emphasize is that occupational therapy is not just for people that need a lot of help or are severely disabled - it is for anyone that wants to do things "smarter" when their bodies are presenting them with challenges and frustrations.

Read the full articles:

Occupational Therapy for People with Multiple Sclerosis originally appeared on About.com Multiple Sclerosis on Tuesday, October 27th, 2009 at 21:35:10.

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Q. When Should I Get a Cane if I Have Multiple Sclerosis?

Tue, 20 Oct 2009 21:14:56 +0000

A. Maybe immediately, maybe never. Like everything else surrounding MS, this is a question that is highly individual (and may change on different days or when we are in different moods).

You probably know if you definitely need to get a cane or some other kind of "helper," such as a walker, crutch, scooter or wheelchair.

You probably know if you don't need a cane right now - you don't have any symptoms at the moment that have impacted your balance or leg strength and have really never been too affected by these things.

Then there are lots of people who fall somewhere in the middle. You were fine today, but yesterday your balance was "off." You may have canceled some plans because your foot didn't seem to "work" right. You might still be a little traumatized (and have a residual limp) from a recent relapse that left you unsure of your steadiness.

In the right situation, canes can help us get some confidence and boost our "mobility efficiency." If you think you might benefit from a cane, talk to your doctor and get a referral to a physical therapist, who can help you select the right cane and use it well.

Read the full article: Q. When Should I Get a Cane if I Have Multiple Sclerosis?

Q. When Should I Get a Cane if I Have Multiple Sclerosis? originally appeared on About.com Multiple Sclerosis on Tuesday, October 20th, 2009 at 21:14:56.

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Some H1N1 Fun Reading for My MS Friends

Tue, 13 Oct 2009 20:43:05 +0000

As many of you know, I am guest blogging on About.com's Infectious Disease site (I am an infectious disease epidemiologist by training). I thought that you, my MS friends, might be interested in some of the stuff I am uncovering, so I have brought this list to you. It is not really MS-specific, although many of the topics apply to us all. Also, I would like to think that I am arming people with MS out there to be the smartest, most current guests at any cocktail party they might attend... That said, here are the most recent posts (in reverse chronological order):

Some H1N1 Fun Reading for My MS Friends originally appeared on About.com Multiple Sclerosis on Tuesday, October 13th, 2009 at 20:43:05.

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People with MS Should Seek Medical Attention for Flu Symptoms

Tue, 06 Oct 2009 15:50:00 +0000

Okay, everyone - we are officially a high-risk group in this whole H1N1 (swine flu) business. This is what the Centers for Disease Control and Prevention had to say about us in answer to the question "What should I do if I get sick?":

"If you get sick with flu-like symptoms this flu season, you should stay home and avoid contact with other people except to get medical care. Most people with 2009 H1N1 have had mild illness and have not needed medical care or antiviral drugs and the same is true of seasonal flu.

However, some people are more likely to get flu complications and they should talk to a health care provider about whether they need to be examined if they get flu symptoms this season. They are:

Children younger than 5, but especially children younger than 2 years old
People 65 and older
Pregnant women
People who have:
- Cancer
- Blood disorders (including sickle cell disease)
- Chronic lung disease [including asthma or chronic obstructive pulmonary disease (COPD)]
- Diabetes
- Heart disease
- Kidney disorders
- Liver disorders
- Neurological disorders (including nervous system, brain or spinal cord)
- Neuromuscular disorders (including muscular dystrophy and multiple sclerosis)
- Weakened immune systems (including people with AIDS"

Although this is not elaborated upon, I am pretty sure it is because people with MS tend to have respiratory dysfunction. As I have mentioned before, even people with low EDSS scores can have lung function that is only 60-70% of normal.

Therefore, if you suspect that you have the flu, make sure you see a doctor right away (or at least call). Remember, the antivirals like Tamiflu work best within the first 48 hours of symptoms. I would also highly recommend a vaccine against H1N1 (the shot, not the FluMist version) as soon as it becomes available.

People with MS Should Seek Medical Attention for Flu Symptoms originally appeared on About.com Multiple Sclerosis on Tuesday, October 6th, 2009 at 15:50:00.

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