About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Keep it Romantic

By Lauren Kovacs

I am, by no means, an expert on romance or dating. MS is more fact. It does not have bubble shaped hearts floating around. More of a mean Cupid thing.

I married a guy from my church. We met at 17 years old. I was not officially diagnosed until I was 21, but had symptoms at 16. I was the little blonde cheerleader and he was the big high school jock (different schools).

High school sweethearts. Let me barf, I know.

I did well early on. MS did not stop me. MS behaved for the most part the first 15 years.  MS lived with US and not the other way around.

My husband knew the heat and fatigue were issues. I was active with our three sons and did Irish dance, clogging, and figure skating. I only stopped because of pregnancy. MS was locked up back then.

Fast forward. My youngest was in preschool and things began to change. I opened up to him and it was just too much. His active wife was starting her descent. The MS pit is dark for everyone.

Work and family life were a lot for him. Dumping my MS garbage on him was not working.  I clamped up and bottled it. Not smart. There was only so much room in the bottle. It held evil MS air and not some wonderful magic genie.

Fast forward again. The youngest is 7 and the pressure in the bottle starts to leak. I can’t handle it. I knew I could not unleash on my husband. I really needed help. The talk therapist helped a lot.

Now, I can hardly walk. He knows I can no longer write, sew or paint. He and my sons know I need to be near a potty at all times. He sees me struggle. We don’t really play “what if.” We are mostly one day at a time.

I read books and took the marriage personality test. I had taken a similar test when we did our marriage classes. I knew I needed to dump on someone other than him.

He came to his acceptance of MS on his own terms, in his own time. Like most MSers, acceptance comes in time. I am so very blessed. Lots of MSer’s spouses bail. Pressure comes from all directions with MS. Many relationships require slow tweaking when MS is the 3rd wheel in a relationship.

Step into the other person’s shoes. What if you watched your spouse’s slow decline.  It does take a very special person. MSers are special and they deserve a special person.

A disinterested third party is key to keeping the flame lit and keeping the wheels running smoothly.

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My MSAA Community – One Year Later

It has officially been one year since MSAA launched its online peer-to-peer forum, My MSAA Community!  This virtual community (powered by HealthUnlocked) has allowed individuals living with MS and their care partners and families the opportunity to share their experiences, discuss a variety of topics, and support others in a friendly and safe environment.  Community members are able to connect with other people affected by MS, contribute to ongoing conversations, or start their own conversation asking for advice or sharing their journey.

Here are just a few of the ongoing conversations being discussed on My MSAA Community:

Commemorate this milestone with us by contributing to these conversations or start your own by joining My MSAA Community!

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Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness.  At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us.  And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either.  The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice.  I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

  1. Can you be gentle and respectful to me when my health inconveniences you?
  2. Can you respect and appreciate me if it gets messy?
  3. Do I like how you treat me when I’m sick or not doing well?
  4. Do you continue to treat me as a partner when taking care of me?
  5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
  6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
  7. Will you go to doctor appointments with me and share my experience?
  8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
  9. How resilient are you? How do you handle stress?
  10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Physical Wellness with Aquatic Exercise

In the past couple of weeks, we have been looking at strategies for finding the best wellness plan for each person, whether it is watching for signs of depression, or making time for physical wellness in the weekly routine.

When it comes to finding a physical wellness routine, it can be difficult to find just the right exercises for individuals with multiple sclerosis who experience heat sensitivity, balance issues, mobility concerns, and other symptoms.

One easy way to combat these concerns, while still getting in a little physical activity is to look into the benefits of aquatic exercise.  Research that has been conducted suggests that aquatic exercise is effective for improving mobility function, cardiovascular endurance, fatigue level, muscle strength and flexibility/range of motion in individuals with MS.

The best part about aquatic exercise is that it is easily adaptable to each swimmer’s experience level and physical ability.  Swimmers who are more comfortable in the water can aim for a higher-level aerobic workout, or they can opt for a slower workout by moving around a pool, with the water providing slight resistance.

If you are looking to incorporate aquatic exercise into your physical wellness routine, keep these tips in mind:

  1. Always be sure to consult your physician or healthcare team before taking up a new exercise routine.
  2. Locate a pool or facility that works best for your lifestyle. If you need help finding a facility that meets your needs, feel free to check out MSAA’s My MS Resource Locator® or you can call our toll-free Helpline at (800) 532-7667, ext. 154.
  3. Set realistic goals for yourself in the pool. Perhaps you are hoping to improve your balance, or simply strengthen your leg muscles.  Communicate this to your healthcare team and your instructors (if applicable) to help you develop a plan to achieve these goals.
  4. As with any exercise routine or aerobics class, communicate with the instructors and trainers about your concerns or questions. You will feel more comfortable in the pool and be better set to reach your goals.
  5. Lastly, have fun! Physical exercise can feel like a chore sometimes, but the more fun you have exercising, the more motivated you are to keep doing it.

Learn more about the benefits of aquatic exercise for individuals with MS by visiting MSAA’s Online Aquatic Center.

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Exercise Your Face Off

By Doug Ankerman

I’m a huge advocate of exercise and stretching in the battle with multiple sclerosis.

Though I understand many of us (me included) have trouble with standing, walking and some basic movements of working out, there is one neglected area of our body we CAN exercise…our face!

Did you know you have 43 muscles in your face just waiting to be used?

Instead, we let gravity take over by pulling our faces downward.  Sagging till we look less like ourselves – and more like Droopy Dog.

Forget all those age-reducing potions and the creamy-crap you smear on each day.  Start looking younger from the inside out by toning up the muscles of your grill.

Exercising your face is goofy-fun and so easy to do even those of us with MS can do it!

I’ve put on my 80’s fitness gear to show you how…..

Make your face reeeeaaal small.  Squeeze your eyes shut.  Purse you lips like sucking on a lemon.

Then make your face big.  Big as ever.  Eyes wide.  Mouth open (Careful of flies).  And do it over and over again several times.

Scrunch your face to the right.

And take it to the left.

Do it again and again.

Wiggle your eyebrows best you can.

Puff out your cheeks.

Crinkle your sniffer.

Stick out your tongue.

Smile big.

Smile bigger.

Work your lips like you are making out with your favorite movie star.  (Mine is Clint Eastwood so I’ll rethink that one!)

You can’t go wrong because ANY exaggerated movement is great for the face.  And you’ll feel instant results.  Your face will feel tighter, firmer and toner (Wait, that’s not a word).

You can exercise your face in just a couple of minutes.  And you can do it anywhere except public places as others may think you have a tic.

Maybe as an MSer, we can’t walk so well, but we can look fabulous!

Get started now.  You’ll thank me later.

*Doug pokes fun at MS and other nonsense on his humor website at myoddsock.com. He also disappoints his family on Twitter @myoddsock.

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Sometimes Living with Multiple Sclerosis Can Get Overwhelming

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help  people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Dealing with Symptoms of Depression: Sports Car to a Jalopy

By Lauren Kovacs

This is kind of a touchy sticky subject for many. Depression is often brushed aside like sugar from a donut. We see it on the table and we brush it onto the floor.  It might be out of the way for the moment, but you only moved it.

MS has so many issues.  For me, I knew when the MS was changing and I could not deal.  I was losing control of my own body.  I went from a college athlete and very active to a total mess, after 18 years.

I was very angry.  I felt lost.  Something snatched my body.  Smashing plates helped, but then trying to replace the dishes I broke was too hard.

I started seeing a talk therapist and I talked a lot.  Just letting me have diarrhea of the mouth helped me cleanse my soul. Trust me, the mudslide was thick.

After about a year of just surfing the talk therapy wave, I was ready to try a tiny bit of medication.  I am not one to turn to medication, but daily crying was too much.  I was drowning in a mess and that was 100% not me.

I tried one anti-depressant and the heart palpitations and rage were so bad that I refused to try another. Six more months of daily crying was messing with my hydration. In addition, it took too much effort to apply eye make up only to then cry it off.  I agreed to try another, reluctantly.  I am very stubborn.

This particular one worked. It was just enough to help me attack the day. Before I take it, I notice I have a very defeated attitude.  After I take it, I am back in the game.  Put me in coach.

Symptoms of depression are complex, like anything with MS.  Anything weird warrants a mention to the doctor.  Telling mine was not easy. I did not like telling her about my dish smashing, but I know my “what’s the point?” comment helped her understand.

Medication or therapy may help; they may not. I find MS to be very trial and error.  What helps me may not help another, but most MS people will try something new.  Any “snake oil,” as my husband calls it, might work a bit.

Be open to telling someone your pain.  Be open to maybe trying something.  I was locked in a battle with depression that I did not have to fight.  Take a deep breath and evaluate.

Try and hold onto the MS wave.  Your body may need a bit of help.  I now have to wear a life vest in my own pool.  Yet one more thing MS took was my ability to swim.  I was depressed by this fact.  Now, it is a challenge.  I attack buoy-training head on.

Depression comes and goes with the ebb and flow of MS.  Don’t let it go, if something is getting you down.  You might need a life vest.  It can be embarrassing to need some help, but it is better than drowning.

MS folks live with constant loss.  Loss can be depressing.  I went from 60 MPH to about 10 MPH.  Going from a flashy sports car to a busted up jalopy is frustrating.  Mourning the loss of self is sad.  It can be tough to find yourself in the mud-sidle.  Keep looking.

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Finding Myself In A Funk: Staving off Depression Due to MS Disease Progression

By Stacie Prada

Each time a symptom worsens, it can trigger fear, grief, and depression: fear for the unknown future, grief for losing some physical or cognitive ability, and depression for the sadness of the whole life with multiple sclerosis experience.

Lately, spasticity in my arms and legs is increasing. Spasticity results when the central nervous system sends messages to parts of the body involuntarily causing them to tense. It’s causing me physical pain and affecting my coordination. I’ve tackled spasticity head on by talking to my neurologist, starting medication, stretching, exercising, and getting referrals for physical and massage therapies.  It’s a bit overwhelming since I have enough in my life consuming my time already.  But beyond this common MS symptom is the emotional distress triggered when I think about what will likely come as my disease progresses. My mood is flirting with depression, and that worries me.

It helps me to know that our moods will always ebb and flow between the highs of joy and lows of depression. It’s impossible to experience life joys and hardships without a changing mood.  For me the goal is not to avoid sadness, it’s to recognize when I’m headed for depression and use those low feelings to motivate me.  I hope to redirect my behavior and thoughts to something personally productive.

Being diligent about watching for potential depression, validating feelings, taking action, and assessing the experience after each episode helps me deal with the cycles of adjustment and depression that come with having a chronic and progressively debilitating illness.

Be diligent about watching for potential depression. The goal is to anticipate when I might be susceptible and recognize the subtle signs before it’s more difficult to course correct. Some ways I’ll recognize I’m at risk for depression are the following:

  • If something in my life is causing increased stress or symptoms are worsening, I’ll ask myself how I feel about it. Does it feel manageable? Does it scare me? I need to pay close attention to how I’m dealing with stressful situations and be on the lookout for depression.
  • Friends and neighbors check in on me when my routine is unusual, and I try to be someone who checks in on others. It’s critical to let them know I appreciate it when they check in, otherwise they may feel discouraged from doing so.
  • I try to notice if I’m declining activities I enjoy because they seem like too much effort. Given that fatigue can contribute to this, it’s good to be honest about the reason for the decision. We don’t do ourselves any favors with self-deception.  We just delay helping ourselves out of a difficult situation and potentially increase our suffering.
  • Trust and encourage people close to me to let me know if they think something is off with me.

Validate feelings.  Remember our physical and emotional health are inextricably entwined.  Recognize that it’s normal to feel depressed when our health is declining. It’s not a character flaw or personal failing to experience feelings of depression. Give yourself credit for doing as well as you’re doing.  Consider that you have a lot of skills that keep you living well with your condition and that needing more help is reasonable and going to happen periodically.  Remind yourself that you don’t have to feel terrible and these feelings don’t need to last forever. There are actions we can take that can help.

Take action. I’ve found that if I can take just one little step to offset my low mood, it can put me on a path toward feeling optimistic and empowered again.  Intentionally make the first step small.  Success is what’s needed at this point to encourage taking the next small step that will hopefully lead to more.

  • Do things that naturally help your body release mood-boosting endorphins. Use the mind-body connection to your advantage by listening to music you love, dancing, stretching, and moving your body. Triggering your body to release endorphins won’t solve your problems, but it will make you feel better temporarily and sometimes that’s the best we can do in that moment.
  • Power through: Pushing yourself to ignore feelings of depression can help in a moment, but recognizing depression and addressing it directly is necessary for long-term wellness.
  • Pursue connection: Talk to someone. Your neurologist, counselor, confidants, and online groups closed to people with MS can be a good sounding board. They can help validate your experience and help you find your way through these feelings.
  • Contribute: Whether it’s through work, volunteering, mentoring, or even casual encounters throughout the day, find ways to contribute to society. Knowing that your value is more than your physical abilities is crucial for adapting each time your body deteriorates. Having purpose and giving to others helps develop this sense of self-worth. There are ways to accommodate disability to continue being able to contribute even if it looks different as our disease progresses.
  • Seek personal growth: Learn something new, create something, or seek opportunities to see things differently than you have in the past. A change in perspective can neutralize feelings of depression dramatically.
  • Consider supplements and medications: Talk to your doctor about treatments available to you. They can be used temporarily to offset depression that has surpassed the point of being able to tackle without medication. Medication may also be helpful for ongoing maintenance if needed long-term.

Assess the experience. Think about what triggered feelings of depression and what helped you to feel good again so that you might be more prepared for next time. Think of it as weaving a personal safety net that includes your posse of friends, family, and health care providers along with lessons you’ve learned from past challenges. Remembering your previous successes will help you be your own inspiration when you need guidance in the future.

The time between when I start exhibiting tendencies toward depression and when I recognize it may not be as fast as I’d like, but with practice and self-awareness I keep getting faster. Improving my response time reduces periods of distress and helps me build confidence in my ability to face my future with MS. I’m still in the midst of applying these lessons to my current situation, but I think I’ve reached a turning point. I have faith in my safety net, and I know that I’ll adapt. I also believe that thriving in life doesn’t depend on life being easy; instead I think facing challenges head on with grace is what thriving looks like.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Six Summer Sun Safety Tips

Summer is officially upon us, and as we all celebrate the warm weather with barbecues and pool days, here are six sun safety tips to keep in mind while you are outside with friends and family this summer:

  1. Remember that the sun’s rays are strongest between 10:00 am – 4:00 pm. It’s a great idea to limit your sun exposure during these times.
  2. Apply sunscreen at least 30 minutes before going outside and reapply regularly to keep your skin protected. Using a waterproof sunscreen protects in and out of the water!
  3. Cloudy days still require sunscreen. 80% of the sun’s rays can pass through clouds.
  4. Stay hydrated! Don’t wait for your thirst to set in. Remember to drink water throughout the day.
  5. Protect your head and eyes with hats and sunglasses. Make sure your sunglasses have UVA and UVB protection.
  6. Some places are easily forgotten when applying sunscreen. Don’t forget to apply sunscreen to the tops of your feet, the backs of your ears, and use an SPF lip balm.

We hope everyone enjoys a safe and happy Independence Day!

Please note that MSAA will be closed on Monday, July 3rd and Tuesday, July 4th in recognition of Independence Day.  We will reopen on Wednesday, July 5th.

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Ask the Expert – Cognition

Featuring Randall T. Schapiro, M.D., FAAN
President, The Schapiro MS Advisory Group
Clinical Professor of Neurology (Retired), University of Minnesota

Question: What are some ways to address and treat MS-related cognitive issues?

Answer: Cognitive issues in multiple sclerosis were basically unheard of before 1983.  That was not because they did not exist but because they were not studied.  Subsequently they have been studied extensively and problems with memory, planning, foresight and judgement are clearly present in over sixty percent of those with MS.  It is important to emphasize that everyone with MS is different and all do NOT have cognitive issues.  When evaluating cognition in MS it is extremely important to take into consideration any additional issues of fatigue, depression, and anxiety.  These may falsely lead to a cognitive impairment diagnosis and certainly can contribute to making cognitive impairment appear worse.  There are neuropsychological tests that can objectify cognitive function and are clearly superior to more subjective testing done at the “bedside” or in the office.  Investigators have tried to correlate MRI anatomy with cognitive function with varying degrees of success.  At the present it is very hard to predict cognition by looking at an MRI although clinicians often try to do so.  In my opinion, the best way to manage cognitive problems is to avoid them entirely by prevention with disease modifying medication.  That is one of the reasons we recommend early treatment with these effective medications.  Cognitive rehabilitation through a speech pathologist or neuropsychologist can, at times, be helpful but may be less that satisfying.  Like many symptoms of MS an answer to disability is mobility and remaining mobile and staying active, using your mind is essential.

Question: How can you tell if the “cog fog” is related to MS or other health issues?

Answer: “Cog-fog” is a somewhat slang expression for the feeling that may intermittently layer onto those with MS giving the feeling of increasing cognitive problems.  There is no “officially” accepted physiological explanation for this other than increased fatigue, depression, anxiety.  Medically, accompanying issues such as infection or other medical illnesses e.g. thyroid disease should be explored.  When there is an acute, sudden onset of “cog-fog” or any new symptom, the treating neurologist should be called to review the situation for something that might be contributing to this relapse.

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