Q. Am I more susceptible to H1N1 because I have multiple sclerosis?
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.
Read more: Should I Get the Flu Shot if I Have MS?
Julie's Low Dose Naltrexone Journal: Month 6
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:
Occupational Therapy for People with Multiple Sclerosis
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 Multiple Sclerosis
- Getting the Most Out of Occupational Therapy for People with Multiple Sclerosis
Q. When Should I Get a Cane if I Have Multiple Sclerosis?
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?
Some H1N1 Fun Reading for My MS Friends
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 Facts, Plain and Simple, About H1N1 (Swine Flu)
- Reye's Syndrome and the Flu
- Check Out FluView for the Real Flu Story
- How Much Will a Flu Vaccine Cost?
- Check Out This Flu "Self Assessment" Tool
- Which H1N1 Vaccine for People with Asthma?
- Why is H1N1 So Dangerous for Pregnant Women?
- H1N1 Myth: "Swine Flu" Vaccine is a New Vaccine Approach
- Q: Can I Get Both Flu Vaccines at the Same Time?
- Who Should Get 23-Valent Pneumococcal Vaccine to Prevent Swine Flu Complications?
- Pneumococcal Vaccines in the Age of H1N1
- H1N1 (Swine Flu) Mortality and Reality Check
- Many Parents Not Enthusiastic About Swine Flu (H1N1) Vaccine
- Read This Before Rushing to the Emergency Room for Flu Symptoms
- H1N1 (Swine Flu) Vaccine: 2 Doses for the Little Ones
- H1N1 (Swine Flu) Survival on Surfaces
- Why Does Obesity Put People at Greater Risk for Complications or Death from H1N1?
- Guillain-Barré Syndrome Risk More Likely From Flu Than Vaccine
- Thimerosal and the H1N1 (Swine Flu) Vaccine
People with MS Should Seek Medical Attention for Flu Symptoms
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.
Q: When should I tell someone I am dating that I have MS?
Some people are comfortable discussing their multiple sclerosis (MS) with everyone they meet, while others feel that this is private information to be disclosed at just the right time. The situation is a little more complicated when it comes to dating - we want to find a balance of honesty and reserve while we are trying to figure out how we feel about someone.
I have my own opinion on the matter. Read about that in the full article here: When should I tell someone I am dating that I have MS?
You probably have your own opinion or, even better, your own story about disclosing your MS to someone you were dating. Share that here and read about the experiences of others in the treacherous world of dating: Readers Respond: When is the best time to tell your date that you have MS?
Alzheimer's Disease and Multiple Sclerosis
It is common for people to refer to "a senior moment" or say something like "must be my Alzheimer's disease" when they forget a name or an appointment. I never really thought that was particularly sensitive or funny, since Alzheimer's is real and debilitating.
However, since my own MS-related cognitive dysfunction has led to situations where I am truly befuddled or at a complete loss for words, I REALLY don't think the Alzheimer's reference is funny at all - actually, these moments are often extremely distressing and have given me a great deal of empathy for people experiencing dementia of different types, including Alzheimer's disease.
Sooner or later, most of us who have experienced MS-related cognitive dysfunction do start to wonder if it will continue to progress, how far it will go and how it is different from Alzheimer's disease. Many of us (I know I did) also wonder if our MS gives us a propensity to develop Alzheimer's disease later in life.
I have put together some articles to try and answer some of these questions. I hope you find them informative and comforting.
Read the full articles:
- Am I more likely to develop Alzheimer's disease if I have MS?
- Does MS-related cognitive dysfunction progress like Alzheimer's disease?
- What Is the Difference Between Alzheimer's Disease and MS?
- Cognitive Dysfunction as a Symptom of Multiple Sclerosis
- Tips for Dealing with MS-Related Cognitive Dysfunction
Julie's Low Dose Naltrexone Journal: Month 5
I have received messages from many of you asking how my personal "experiment" with low dose naltrexone (LDN) is going. I apologize for waiting this long to respond, but to be honest, I wanted to wait until I had something positive (or at least neutral) to report. With the summer winding down, I felt like many of the plants in my garden look after all those months of intense heat - tired, wilted and faded - the MS fatigue was back in full force.
I tried having a positive attitude. That didn't help. I tried complaining to anyone who would listen, including whining in my newsletter. That didn't help, either (and one reader sent me a message that basically said that I was a big baby and that I disgusted her, which REALLY didn't help). I tried cutting out sugar, eating more sugar, messing with my caffeine intake, sleeping more, sleeping less, napping, not napping... Nothing, nothing, nothing helped. For three weeks I felt like I did before I started the LDN, scared and desperate and downright exhausted, mentally and physically (and, needless to say, emotionally).
However, I stuck with the LDN, staying steady with my dose of 4.5 mg nightly at 9:30 pm.
Then I remembered that when I first started the LDN, a little exercise in the morning seemed to prolong any good effects that I was getting from this medication. Feeling completely at the end of my rope, I went for a walk outside, since it is now cool enough to do this early in the morning. The results were amazing, in that I actually functioned and accomplished things until about 3:30 in the afternoon. For the sake of comparison, the day before, I had climbed back into bed at 8:00 am (2 hours after getting up) and stayed there until 11:30, until I got up and sat on the couch for most of the day.
I have been exercising like this (walking as briskly as I can for about 40 minutes) for about 10 days. I have had to take 3 days off and the difference is remarkable. Exercise buys me about 7 hours of "life."
I know that many people tout the importance of exercise for people with MS. My theory at the moment is that it helps prolong the effects of LDN by throwing more endorphins into circulation. Regardless, I'm convinced that it is important. I am also still a big fan of LDN and am pretty sure that I would have felt worse without it over the long summer. I'm excited to see what effects the cool weather will have on my exercise plus LDN recipe for success.
Has anyone else noticed anything similar in terms of exercise helping immensely, especially in those people on LDN? Has anyone else had a "slump" while on LDN that they later emerged from (and what it might be attributed to)? Please share your experiences with the rest of us in the comments section below - thank you in advance from all of us who are trying to figure this out together.
Read the full articles/blogs:
Q: Is hip and/or knee pain a symptom of multiple sclerosis?
I have gotten this question from several readers recently. I also just had my own experience with knee pain that really brought the whole issue into focus.
The answer to the question is... kind of.
While multiple sclerosis does not cause the types of inflammation in the joints that cause joint pain in other disorders (such as lupus or arthritis), many people with MS have chronic knee and hip pain. This pain is almost invariably a "secondary" symptom of MS - that is, a symptom that is a result of another direct complication of MS.
The most common example of this is pain because of irregularities in gait (the way that people walk). If you limp, drag your foot, favor one side or use an assistive device in a less-than-perfect manner, this can lead to stress on joints and resulting joint pain. Joint pain can also be caused by long periods of immobility (in a bed or wheelchair) or spasticity that causes the limbs (usually legs) to be held in a certain position for a prolonged period. Also remember that if you take one of the interferon-based disease modifying therapies (Avonex, Betaseron or Rebif), joint pain is a common side effect in the day(s) following your injections.
The good news is that there are things that can be done to relieve and prevent joint pain.
Read the full article Q: Is hip and/or knee pain a symptom of multiple sclerosis?
For more information about pain and multiple sclerosis, including other types of secondary pain, read Overview of Pain as a Symptom of Multiple Sclerosis. To read the experiences of other people with MS who are living with pain (and add your own story), go to Readers Respond: What has been the most painful part of MS for you?