210 posts in the category “Multiple Sclerosis”

How to be your best health advocate

Posted October 3rd, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health.

Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you.

For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call the gastroenterologist who suggests more invasive tests, or perhaps refers you to another specialist. You wonder if there are natural or holistic options because you’re hesitant about taking more prescription drugs.

What do you do? Will traditional medicine cure you? Is complementary medicine safe and reliable? Which websites provide credible information? Which doctor is trustworthy?

For me, there was nothing more important than seizing control of my health. It was a priority I couldn’t ignore. Being involved in the decision-making process can reap numerous benefits.

No one knows your body better than you, and no one has more at stake.

Here are a few steps you can take to become your own best health advocate:

Listen to your instincts – Your body is brilliant and gives you clear messages when something is wrong. Make an appointment to see a doctor if you feel something is awry.

Lists – Create a list of your health issues. Include how long you’ve been experiencing the problem, the severity of it, and list any questions you’d like to ask the doctor. Having a list to lean on is both necessary and important.

Research – Medical websites are great resources, but not all sites are reliable. Trustworthy sites should cite an article’s author and the medical credentials for the preparer or reviewer. (Examples of authoritative sites are American Cancer Society, Centers for Disease Control and Prevention, familydoctor.org, HealthyWomen.org, WomenHeart.org, National Institute on Aging, American Diabetes Association, American Stroke Association, National Center for Complementary and Integrative Health, National Multiple Sclerosis Society, National Institutes of Health, PubMed/National Library of Medicine, Mayo Clinic, Medlineplus, and healthfinder.gov.)

Use your voice – Speak up for yourself and insist doctors answer all of your questions. Make sure you give them thorough information and that they are listening. If you’re unhappy with your medical team find another one. Do not allow yourself to be rushed.

Understand how your health insurance plan works.

Review your medical bill for errors. Ask for an explanation if there’s an entry you don’t understand.

Get a second opinion when necessary. Ask for referrals from your doctor or people you trust.

Maintain your own health records. Learn from others who have experienced similar health issues. This can help you emotionally and provides you with the confidence to find what works for you.

Be persistent – If your doctor doesn’t return your call, call again. Insist on getting the answers you need.

Be organized – Never leave an office visit without a follow-up appointment or referrals and labs in hand. Use a written or computerized calendar to keep on top of your schedule. Take advantage of phone apps to keep you organized.

Get answers – If a doctor isn’t providing you with the answers you need find another one. Keep searching until you find what you need. Always keep your eye on the prize of wellness.

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MS and Biotin: Is there a link?

Posted September 29th, 2017 by

You’ve probably heard about biotin and reports that it might improve health. Like most things on the internet, the truth isn’t always clear. To clear up some of the swirl, our Health Data Integrity team took a deep dive into the current research. So, what’s biotin and how can it impact health and MS? Take a look.

What is Biotin?

Biotin is a water soluble type of vitamin B, or more specifically vitamin B7 that can be found in a variety of plants but mostly found in liver, egg yolk, soybean products, yeast, and many other foods. While the primary function of biotin is still unclear, it helps the body produce and use certain nutrients and it can be used to improve biotin deficiency associated with pregnancy, malnutrition, rapid weight loss, and long-term tube feeding. Although there is insufficient evidence, biotin also has been used as a supplement to help treat hair loss, brittle nails, diabetes, and certain types of rash in infants.

(source: https://medlineplus.gov/druginfo/natural/313.html)

Biotin and MS?

The exact role of biotin in the progression of multiple sclerosis (MS) is still unclear. MS develops when myelin, a substance that protects the nerve cells, is damaged. Having the proper amount of myelin protecting the nerve cells allows these cells to communicate with each other more easily. Biotin is believed to help the body produce more myelin which could mean it may be helpful for patients with MS.

small study was done with 11 secondary progressive MS, 4 primary progressive MS, and 6 patients with relapsing-remitting MS taking 300 mg of biotin daily. After evaluating at 3 months, 1 patient showed signs of improvement in arthritic pain. Another patient noted great improvement in energy. The main result noted that none of the patients experienced any adverse outcomes with biotin.

Another study involving 14 patients with primary progressive MS and 9 patients with secondary progressive MS looked at treatment with 100-600 mg of biotin daily. After 3 months of treatment, the 4 patients in the study with chronic visual loss showed improvement in their vision. Additionally, 16 out of 18 patients with spinal cord involvement displayed clinical improvement after 2 to 8 months of treatment.

These results have also been supported by the findings of a study of 154 patients with progressive MS. In this study, it was found that treatment with a specific high-dose formulation of biotin was able to improve certain measures of disability.

It’s important to keep in mind that this data has come from a selection of relatively small studies so it will be important to see if these findings can be confirmed in larger studies. Currently, there are a handful of studies being conducted to evaluate the use of biotin to treat MS. These include three different phase III studies evaluating the use of a specific formulation of high-dose biotin in patients with:

  • spinal progressive MS (click here for more information)
  • chronic visual loss related to optic neuritis in MS (click here for more information)
  • progressive MS (click here for more information; this trial is currently in the process of recruiting participants)

(sources: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5098693/http://www.neurology.org/content/86/16_Supplement/P3.039http://www.sciencedirect.com/science/article/pii/S2211034815000061)

Currently, there isn’t a specific recommended dietary allowance for biotin as the appropriate dose will depend on several factors like the patient’s age and health. However, the adequate intake for biotin is 30 mcg daily for adults and many individuals are able to get this amount from eating a healthy diet.

There is no toxicity reported as being associated with excess biotin intake. However, biotin can interfere with certain laboratory tests such as thyroid function. Make sure to tell your doctor if you start taking biotin.

So, what’s the takeaway?

While preliminary research shows that biotin may improve symptoms in patients with MS, more extensive clinical trials are in progress to evaluate the efficacy and safety of a specific high-dose formulation of biotin in patients with MS.

As mentioned above, one of these studies is currently recruiting participants who are diagnosed with primary or secondary progressive MS. To find out if you qualify and the locations of the studies, you can click here for more information.

Even with the current studies, the role of biotin in the treatment of MS is not completely known. Talk to your doctor if you want to start taking biotin supplements and decide if this treatment is right for you.

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