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Saturday, December 1, 2012

MS Facts and Your Support Team

I am going to aim this part of my discussion primarily at MSers. (I am working on something for other folks, too.)

The Winter 2012-13 edition of Momentum magazine was quite interesting. MSers with relapsing-remitting MS (RRMS) are always waiting for the other shoe to drop.We expect our MS to become secondary-progressive MS (SPMS) any day. But within the first 10 years of RRMS, only about 50% will become progressive. (pg.15) Maybe you knew that, but it’s better odds than I had hoped. When I was first diagnosed, my neurologist’s responses led me to think I had SPMS already. But then he put me on a disease modifying treatment (DMT), Copaxone, and through reading I discovered that that meant I still had RRMS. It matters to us because treatments work better on RRMS. Once MS becomes progressive, there are fewer treatments available. There are clinical trials going on for those with progressive forms of MS. Don’t hesitate to get into one. Oftentimes, a trial will allow participation from people all across the country. Ask your neurologist, or email or call the people running the trial.

If you’re just getting into finding out what kind of support there is for you, there are a lot of medical professionals to get on your team. (pg. 17-18) Get referrals to them from your primary care physician (PCP) when needed. Don’t hesitate to do so. If you can’t afford these folks, look for a hospital that is a non-profit, often associated with a religion or a university. On their website, choose the page about patient resources, and look for patient assistance. Or, try financial assistance. They often have programs that will let you see all the doctors in their group for free or at a significant discount. You’d be surprised how useful some of them can be. Here’s a short list to get you started:

·         Primary care physician (PCP)
o   Helps you to coordinate it all, gets you referrals, and can help fill out paperwork to get free or no cost treatment when you are underinsured, uninsured or just broke.

·         Neurologist (neuro)
o   Your neuro diagnoses the MS and prescribes DMTs and other drugs to help you manage it. She or he can also help you in many of the same ways as your PCP, depending on the individual doctor.
·         Physical therapist (PT)
o   Not only can she help you build strength and balance, but she can also show you how to make choices that minimize fatigue.

·         Occupational Therapist (OT)
o   Your OT can help you with upper body strength, and he can also show you how to use tools that help you act as independently as possible. Mine showed me some neat tools for getting my shoes on and off.
·         Medical psychologist
o   Dealing with MS means meeting new challenges, and coping with overwhelming emotions. I have been to one to talk about how angry I am with the medical system for not getting my diagnosis right for many years. The sooner you get the MS diagnosed, the more you can keep it in check.
·         Social worker
o   She can help you find resources you didn’t know you qualified for from Medicaid/Medicare to food, people who can help you at home, and more. Check with the Social Security Office and your county or city health department and county offices.
·         Speech-language pathologist
o   If MS makes it harder to talk or to swallow, then this is the person who can help you. Sometimes, the OT or PT will be the right one for this task. Ask!
·         Vocational counselor
o   Here, it’s a county function. There is an office for disabled folks where they help you to retool yourself and market yourself for work you can do.

·         Urologist
o   If you are having problems with your urinary tract, this doctor should be able to help you with a special PT, medications, or exercises.

·         Gastroenterologist        
o   If MS has affected your gut, a gastroenterologist can help with ideas or medications.
·         Anesthesiologist or Pain management specialist
o   A pain management specialist can be really important. Your PCP and neuro can help some with pain, but sometimes you need someone with more depth.
·         Ophthalmologist
o   For years, my eyes have had auras, twinges, and small stabbing pains. I put it all down to migraines or allergies. Turns out some of that could be optic neuritis or other vision problems caused by MS. Some folks have blurred or double vision, or get vertigo. A good ophthalmologist is important to have.

·         National Multiple Sclerosis Society (NMSS)
o   NMSS can often refer you to doctors who have done a good job for MSers in your area. They have a program called the MS Navigators who are people trained to answer many kinds of questions. Find your local chapter on the NMSS website and get a phone number for the MS Navigator. You can read about what is available here:
·         A Support Group
o   There’s nothing like a good support group. You can join several online and see what fits you well. The group I administer gives support as people go through life with their illnesses, but it also does a lot of research, trying to figure out how to help people lessen their pain and increase their function, and considering various treatments and how they work or don’t work, and whether the new ones coming up might have potential for us. Other groups might focus on emotions or diet or other areas.

o   The NMSS has support groups that meet in person, and if there isn’t one near you, they might train you to get one going in your neck of the wood. Think about it! If there are at least 300,00 MSers in the US, then there are at least about 60,000 in your state. Some of them have to live near you. (With something more widespread like fibromyalgia, there are over 6 million in the US! There will be someone near you!)

You are never alone!

1 comment:

  1. Thank you. I have met many PWMS (people with MS) on Facebook, through a group organized by Rae Edwards. Rae runs the and hosts (or invites others with MS to host) telecommunications shows: interviews with authors of books that are about life with MS, conversations with others who are dealing with MS treatments, etc. It's been very helpful. Rae featured my book as one of the first four; she calls us the 'founding authors' of the MS Book Club and Poetry Group.
    My book is titled MULTIPLE SCLEROSIS, AN ENIGMA and you can find it at my website ( or at Amazon, Smashwords or other online book sellers.

    Thanks for including me in your email. My social circle has shrunk considerably since retiring (because of MS fatigue and memory issues) from my middle school classroom.

    But my virtual (internet) circle has widened.

    Terry Palardy,