Where and How to get Your MS Information


                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better. I told them that the medications are to keep from getting worse and not to make one better.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

#1 The NPR Diane Rehm Show (9/24/2012) aired “Diagnosing, Treating and Living with MS.” A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

Author/MS Counselor/Living with MS

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Making Decisions when Managing MS

In many online MS discussion groups, participants discuss what is the best thing to do or take for MS, and what is “bunk.” Subjects range from treatments, diet, and stress to exercise, experimental drugs and alternative medicine.

If one seeks information from MS organizations or medical websites, the standard directive is “ask your doctor.” But realistically, if you ask your doctor, most will recommend drugs. Drugs for symptoms, for relapses, and long-term DMD treatments. There are two reasons for this:

1. What else can they do for you in the fifteen minutes that they see you? They can’t cure you but they will want to make you feel better and try to prevent you from getting worse. In addition, doctors certainly don’t have the time to educate you or answer a lot of questions. They will refer you instead to physical/occupational therapy, pain clinics, etc.

2. Relative to prescribing drugs, doctors depend on the scientific evidence of these substances. They will send you off with scripts for tests initially and ongoing. Relative to body wellness for MS, while they would agree that exercise and proper diet is good for you, they will not specifically address these topics because there has not been enough scientific evidence done to determine their positive/negative impact on MS. So again, the patient is referred elsewhere.

Everyone’s body and MS are unique, and everyone responds differently to anything you take or do to your body. No two cases are alike in response to these actions just like no two cases of MS are alike. While some things work for some, often they don’t work for others.

So, when you need to make a decision regarding something about your MS and are stuck, what should you do?

Personally, I practice common-sense, logic, and balance for both my body’s wellness and medications I choose to use. I ask myself these questions:

• Does it make me feel better?

• What are the short/long term risks of doing or not doing something?

• Do the benefits outweigh the risks that I am willing to take?

• Am I doing everything I can possibly do to prevent infections, sickness, falls…?

• Did I gather enough research from reliable sources to help me make my decision?

There is no question that proper diet, exercise, sleep, stress management, weight control, etc. are essential for vital body functions and helping to manage/control MS. This is true for a person without MS, but especially important for a MS patient to help managing/controlling their disease.

I am open-minded and listen to others in online discussions as part of my personal research for making my own decisions about managing my MS. I dig through the internet for studies and statistics. And I consult with doctors and other health care professionals for their insights; but a health professional is not my only source of action or fact-finding, giving him/her a carte blanche.

Then I document and keep journals of what I do and what the effects are.

There are no absolute rights or wrongs. I know my body well, but I leave myself open to trying something new if I feel it is safe and I have nothing to lose by trying. Like everyone else with MS, I want to feel better and get better.

One rule I follow for myself with regard to making any decisions about anything: “When in doubt—don’t!” I can always revisit the situation later.

Ultimately, decisions are made by me. I only have one body and am the one who has to live with it.

Author, MS Counselor, Living with MS

Does the Doctor Really Know What’s Best for You?

“It’s your choice.”

June 18, 2013

I have seen doctors for almost all of the forty years of my adult life, and this is what I learned:

While I need to have doctors in my life as I deal with MS, I ultimately know what is best for me to do—not my doctors. I know my body and I will always make the final decision relative to how I want to be treated by a doctor. My doctors are there for support, knowledge, prescriptions, consultation and referrals. If I believe I am not getting from a doctor what I (or my insurance) is paying for, I will fire him/her.

It is a viewpoint other older MS veterans have shared with me.

Many MS specialist-neurologists are experts—they have seen numerous patients and are trained with knowledge. But I am an expert too, with a lot of common sense. I have talked with numerous people dealing with MS (both patients and professionals), and constantly research information about my disorder.

Each case of MS is different with regard to disability, rate and duration of relapses/progression, symptoms, response to medications and treatments, etc. It is a fact that that no two cases are alike. I believe I know my body best in terms of how I feel and how my body acts/reacts; this is information that I must note and share with my doctor.

I live with MS, monitoring and documenting many things regarding my own case, 24/7 every day–symptoms, side effects, triggers… A doctor looks at my case and evaluates me for only about fifteen minutes every 6-12 months. As one recent MSer complained to me, “I just wish a doctor would listen to my symptoms and not just do their little neurological test of pinch here, pock here and say nothing wrong here. This sucks.”

Recently, I spoke with a person with MS who was complaining how bad MS had been affecting her cognitive abilities. During the discussion, I learned the doctor prescribed her a sleeping pill, an anxiety pill, and a pain pill—all at the same time!! It was no wonder why her mental faculties were impaired. Where’s the common sense here?

Other patients receive scripts to treat two or three things at one time with no instruction to start them at different intervals. How would someone know what is affecting what, positively or negatively?

Since I am not on a DMD treatment, I choose not to get MRI’s. Personally, I don’t care how many lesions I have or how big they are because that by itself isn’t always reliable in terms of what to take, do, or how bad I am. For me, going for an MRI every six months is a waste of my time and money. But that is my choice and my decision.

And doctors are not always right. Doctors make mistakes or poor decisions as well. Maybe they are having a bad day, are overloaded, or were given faulty test results. Let’s face it—why do people get second or even third opinions before having major surgery, for example?

Truthfully, I like, need and want my doctors. Doctors have things I don’t have–the ability to write prescriptions, order tests for evaluation, and referrals for things like therapy or specialists. I use them to get these things. Also, I really do want to listen to their expertise and judgment, and consult with them about any course of action.

Now I do not have major cognitive issues that interfere with my judgment. But there have been times when I was distraught with anxiety or depression and I felt I didn’t want to make a decision alone. I asked the doctor if he was in my shoes, “What would you do?” I have enough trust in my primary professionals to follow their advice. In these situations, I also have a close family member or friend with me to listen and help evaluate the circumstances. Teamwork is good.

When I choose a doctor, I find one that has very high ratings and one that I am compatible with. It enhances my confidence when I make my final decision about a course of action.

I have been blessed to have two MS specialist-neurologists in two different states that were both opened-minded and respected my personal choices. They talked with me, not at me or down to me. They also recognize that I am the one living with MS and know my body best. However, “Two heads are always better than one” when evaluating anything, so I am open minded as well. And throughout the years, there were certainly good reasons to see and confer with my doctors.

So choose your doctor and your course of action wisely.



Office Visits with your Neurologist

“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…


The Ultimate Doctor

“Are You Happy with Yours?”

September 24, 2012

Two days before leaving on an out-of-state vacation recently, I started having the classic symptoms of a urinary tract infection (UTI). Increased spasticity, cloudy urine, frequent urination, burning. Within a day, the symptoms intensified and worsened; my bladder medication wasn’t working and I was leaking urine uncontrollably. The heat I felt from a slight fever contributed to the mayhem of it all.

Now bladder infections are nothing to mess around with, especially if you have MS. An infection like this not only is bothersome, but more importantly, it is painful and can quickly lead to trouble like a relapse and/or kidney problems. It needs to be addressed quickly.

Having dealt with bladder problems for over two decades and having to use self cathing to void, I know what to look for and what to do. But of course, I need my doctor to get me on an antibiotic ASAP.

It was a Sunday, and I was to leave on Monday. I called the office’s answering service, explained my situation, and requested the on-call doctor to contact me. I received a call within a half of an hour from the doctor. After a brief discussion, a prescription was called into my pharmacy immediately and I had the antibiotic in my hands soon after.

Now THAT’s a good doctor. To me, anyway!

Of course I had been a patient at the office for years, but nevertheless, he addressed my problem with no hassle or waiting. But, even if I wasn’t leaving on a trip the next day, the office has worked with me on this issue before. With past UTI’s, the office helps me on the same day that I call. I know how to take a “clean-catch” urine sample at home, take it to the office for a “squeezed-in” appointment that lasts no longer than five or ten minutes, and once verified that there is a bacteria, I get a script.

Having excellent physicians when living with a chronic illness is essential. It’s a lifetime relationship that requires frequent and unexpected visits, not a once-a-year annual checkup. I have doctors that I know rank in the top 10%. And I have doctors that treat many other MS patients and understand MS.

Now when it comes finding a physician, it is an individual and personal decision. By that I mean that one has to decide what he/she wants from their doctor and what the relationship needs to be. Find doctors and professionals that treat others with MS and fit your personality.

I’ll use myself as an example. I don’t want a hand holder; I want someone I can consult with. I am not a whiner and when I call, that means I need help ASAP. I want called back that day, action within a day. I don’t want to be dragged into the office when I’m too sick to get out of bed. When I go into the office, I don’t want to wait an hour. I’ve got a fatigue problem. I want to talk to my doctor, not the receptionist. I want my doctor to be connected with the latest studies and research.

Are you happy with your physician(s)? If not, it’s time to move on and find another one. You are in charge, not the doctor. You hired the doctor, and if you are not getting satisfaction, fire him/her and get another one.

Ask yourself what you want/need from the doctor and the office, such as good bedside manners; prompt responses; office visits; follow ups; experience; reviews. Interview the office/doctor before you make the first appointment.

So how do you find a good doctor? Get referrals from: a doctor you currently have that you do like, your local MS Society Chapter, family, people you know in the health field, and other MSers. Check their background and credentials on the internet. Two websites I use are www.vitals.com and www.healthgrades.com, but there are others; you can do a Google search using a phrase like “doctor reviews and credentials” to get other websites.

Finally, a couple of other tips:

• Go to the office or call on the phone prepared. Have your questions written down, have your problems written down with specifics. You will only have fifteen minutes with your doctor, if that. Don’t expect to be educated by the doctor. Expect answers to your questions. If you have a lot to talk about, schedule a longer appointment.

• If you have MS: Realistically, the most your doctor will do for you is to prescribe medications for symptoms, encourage disease modifying agents and make recommendations to other professionals (urologists, therapists…). Don’t allow yourself to feel pressured into anything you don’t want to take or do.

• You need to feel that you trust your doctor.