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Often Overlooked Symptoms of MS

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Respiratory Problems as a Symptom of MS

These MS symptoms can be so vague or assumed to have other causes that they often go untreated. They are real. You can get help.

More Overlooked Symptoms

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MS Relapses, Exacerbations, Flares, Attacks...

MS Relapses

A relapse is acute inflammation in the central nervous system of a person with multiple sclerosis that is causing new or worse symptoms. Many of us with MS have strange symptoms that come and go. So, when is it a relapse (and how do you know)?

More About Relapses

Multiple Sclerosis Spotlight10

Multiple Sclerosis Blog with Julie Stachowiak, Ph.D.

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

Wednesday November 4, 2009

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

Monday November 2, 2009

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
  • Occupational Therapy for People with Multiple Sclerosis

    Tuesday October 27, 2009

    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:


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

    Tuesday October 20, 2009

    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?

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