Category: <span>MS Information Sources</span>

The title gives it away, but with which medical professional is a Multiple Sclerosis patient likely to have the most contact?

In my experience, it has been her pharmacist. Most medications are refilled monthly. Between quarterly or annual visits to the neurologist, I believe most concerns about Multiple Sclerosis are related to medications. And in my experience, the pharmacist is the more accessible, knowledgeable source of information about medications and their effects.

The most helpful professionals on my wife’s “treatment team” are the pharmacists at our local pharmacy. In fact, I imagine they know more about the current status of my wife’s health than does her neurologist. The pharmacists are so helpful, they’re on speed dial in my cell phone.

Here are some examples of how forming a relationship with a good pharmacist will make your role as a caregiver much, much easier.

1. Pharmacists know about drugs. Take advantage of the medication education a pharmacist will provide when a new medication is prescribed. Medications come with fact sheets (written in fine print). If you ask, a pharmacist will explain them for you in plain English. Examples of a few important questions to ask about each new medication include:

  • What is this medication for?
  • Will the patient’s other medications interact with this new drug?
  • Do other medications she is taking effect when this one should be given?
  • What side effects should we worry about?
  • What if she forgets a dose?
  • With or without food?

2. Pharmacists really understand drug interactions. It is important to ask a pharmacist about the potential consequences your patient’s prescribed medications may have with over-the-counter medications for such things as cold or allergies. Some drugs interact with each other to complicate or compound the side effects. The last thing you want is to create a problem while trying to treat symptoms of a cold. Pharmacists love to talk about drugs. It’s the reason they went to school for a long time! Take advantage of their knowledge.

3. Pharmacists know what works. Doctors specialize in your body. Pharmacists specialize in what medications do and can do to your body and its processes. More than once a good pharmacist has intervened on a patient’s behalf when he or she noticed the physician’s prescription may not be appropriate. A phone call to the doc is usually all it takes to fix the problem.

4. A good pharmacist can make traveling easier. Ever forget to take important medications on a trip? If you call your home pharmacist. he or she may be able to work with a local pharmacy where you are visiting to provide enough medication for your visit.

5. Your pharmacist can also be a great ally for you in your efforts to communicate with your insurance company about medication authorizations. Pharmacists really understand the whole medication approval process and can give you pointers about relating to insurance companies or provide information on your behalf.

6. Finally, my pharmacist serves an excellent gumbo from his front porch each Halloween night and sets tables in his yard for all the trick or treat parents!

MS Caregiving MS Information Sources MS Medications, subtitled, “How to Suffer from a Chronic and Incurable Disease without Appearing to be a Total Loser”, is a site MS caregivers should revisit from time to time.

You should probably go no more than a year between readings of “The MS Perspective Kit“. It offers a unique way to help one understand what living with Multiple Sclerosis is like. The lessons involve such things as rubber gloves, a woman’s high-heeled shoe, a roll of duct tape, and a large pot of coffee.

Through a healthy dose of humor, the author (who remains anonymous) does an excellent job of sharing the experience of an MS patient in terms that make the experience real for others.


Living with MS MS Information Sources

PubMed Central is a free digital archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health (NIH), developed and managed by NIH’s National Center for Biotechnology Information (NCBI) in the National Library of Medicine (NLM). All of the articles have been peer reviewed and published in professional journals.

PubMed Central exists by Congressional mandate. Any researcher funded in whole or in part by the National Institutes of Health must provide the resulting manuscript to the NIH for publication electronically. Concerned that so many journals were providing free abstracts of research but charging fees for access to full journal articles about research which had been paid for with public funds, the NIH adopted an open access policy.

What does this mean in real terms? It means you can read the full text of 42,807 journal articles related to Multiple Sclerosis.

Here’s the link:

MS Information Sources

The inaugural World MS Day is tomorrow, May 27, 2009. So far more than 8,000 people and organizations from 129 countries have registered at the World MS Day website.

In the future, World MS Day will be held on the last Wednesday in May. This is an important effort and I expect among the results will be increased attention on Multiple Sclerosis. Visit the World MS Day website and see what may be going on locally in your area and around the world! You’ll also find free downloads and information about MS.

MS Information Sources

You may think your pharmaceutical expenses and drug costs are high. They are.

Part of the reason is that drugs are made by corporations that must return value to shareholders. To do this, they must sell drugs. To sell drugs, pharmaceutical companies have paid doctors to promote their drugs. The money paid to doctors is an expense which increases the cost of drugs. That’s the business.

One step beyond the business, though, is corruption. At least one drug company has pleaded guilty for paying doctors to recommend drugs for diseases for which the drug was not approved. And there are new allegations the drug company may have known the drug was not even effective against the diseases for which it was being promoted.

That’s all background.

Pfizer Inc., the world’s biggest drugmaker and the company that created Neurontin, has said it will begin (next year) disclosing all payments of more than $500 it makes to doctors.

According to the MSNBC article, “Pfizer to disclose payments to doctors next year“, Pfizer is doing this “after introduction last month of legislation to require such disclosures, and revelations of astronomical payments to some doctors that were not revealed to universities and hospitals that employed them.” In other words, this is an example of another corporate entity becoming interested in transparency only after regulatory requirements change.

While politicians suggest this is a good move because there is so much public money that passes to drug companies, I believe the real value in this is that it makes transparent the relationship between a doctor and the medications the doctor prescribes.

Here’s what I like about it: suppose a doctor makes a presentation to an MS support group and talks extensively about one of the MS injection therapies and only mentions the others in passing.

Don’t you want to know whether the doctor is focusing on the one medication because he or she finds it really is the best medication and not because he or she is being paid to give a speech? As I wrote in September of 2007 in “MS Medication, Insurance Coverage and 2 Ounces of Gold“, I sure want to know!

Here’s why Pfizer’s decision to report these payments to doctors is important. Pfizer pleaded guilty in a legal settlement related to an accusation it had illegally paid doctors to prescribe Neurontin for uses not approved by the FDA. Pfizer paid penalties of $430 million for paying doctors to prescribe billions of dollars of Neurontin to patients with diseases for which there was no evidence of Neurontin’s effectiveness.

Newsweek has a good article that summarizes the Pfizer/Neurontin legal issues: “Pfizer’s Headache: Lawsuit charges drugmaker was deceptive about Neurontin.”

Pfizer’s behavior offers the clearest example of why transparency in the doctor/pharmaceutical company relationship is important.

Interesting to me is that while Pfizer paid $430 million (about one quarter’s sales of Neurontin), no physician was charged. I think this must be why: Doctors have to be able to trust the information they receive from pharmaceutical companies. Certainly, no physician with integrity would prescribe or promote a drug they did not believe to be effective.

Caregiver Tip: The quickest way to get to the point of this issue with a doctor about a prescription medication is to ask, “Do you receive money from the drug company that makes this medication?” Once that is on the table, you can then talk about whether or not the medication is being prescribed because your doctor really does believe it will be effective.

MS Information Sources MS Medications

You may remember a teacher saying “you must use authoritative sources” when writing a research paper for class. What your teacher meant was to use sources written by people with academic or professional credentials.

For example, if you were to write a paper on growing roses, your neighbor with a green thumb and beautiful New Dawns might be a great source of information. However, unless she has a degree in botany or is a Master Gardener, your teacher will not consider her an “authoritative source”.

When researching medical information online you may be overwhelmed with the amount of information available for you to choose among. There are web forums, blogs (like this one,, web portals, industry-related web sites, and online encyclopedias.

Be careful. Pay attention to what authority stands behind the information. A good example is this blog, I am not an authority on Multiple Sclerosis. I am not a physician or research scientist. I will not write beyond my authority. I am a man married to a woman with Multiple Sclerosis, “doing my best when I can’t make it better”. I write about what works for me and I share it here. Some of it is practical information like “Tips for Traveling and Multiple Sclerosis” and “How Does One Talk with a Doctor?“. Some of it is inspirational, “How Do You Pray?“. Because I am not an authority on Multiple Sclerosis, I will not say, “take drug X and it will relieve your symptom Y”.

Why this discussion about authoritative sources?

It is vitally important that caregivers and patients not base their medical decisions on bad information. Bad information is information that is wrong or incomplete. An example of incomplete information is discussed in a recent article on titled, “Wikipedia often omits important drug data“. The subtitle is “Study: Entries may not include side effects or risks from mixing medications”. I encourage you to read the article. It’s important.

The article mentions a better source for medication information is Medscape Drug Reference, a free, peer-reviewed web site. The article also mentions using for “good quality information that you can feel confident in.”

If you want to learn about joining a support group or what my wife means by “leg hours“, this blog is for you. If you want professional help with an issue more critical to health, that might be risky or is medical in nature, talk with a physician. Use authoritative sources.

MS Information Sources Online Caregiving Resource

I remember life before the Internet. I often think of it the same way I did photocopiers when I was in college in the 80’s. Standing before a copier in the library, working through a stack of reference books I couldn’t take to my dorm, I’d make copies of pages to support a paper I would write that evening. I would wonder, “How did people do research before copiers?”

Now I wonder, “How did people gather new information before the Internet?”

In celebration of easy access to important information about Multiple Sclerosis, I offer this list of Multiple Sclerosis-related newsletters which are certainly worth reading:

The Motivator : Published online and on paper by the MSAA, The Motivator is MSAA’s 48-plus page quarterly magazine which highlights and explains many vital issues of importance to readers affected by MS.

MSFocus Magazine, Support Group News and MSFYi : These three are published by the Multiple Sclerosis Foundation.

MS in focus : Published by the Multiple Sclerosis Internation Foundation, MS in focus is for “People with MS, their carers, healthcare professionals and support groups (who) will find the following areas of MS in focus invaluable: rehabilitation; quality of life and lifestyle; treatments; MS society projects and programmes; and the activities of the global MS community.”

Momentum : Published by the National MS Society, this magazine was formerly known as InsideMS.

So, on a cold, wintery day, grab your computer, visit the web sites listed above and take advantage of free information about MS. You’ll read about things you know already, but you’re also almost guaranteed to learn something new!

Caregiver Tip: Stay on top of current information by using the resources available to you on the Internet.

MS Information Sources