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Wednesday, November 26, 2014
Seminar Synopsis of presentation by Jack Burks, MD on : "Invisible MS Symptoms”
Program Date: November 8, 2014
Many symptoms of MS are not visible
to family, friends and colleagues. We often hear “But you look so good, so your
MS must not be causing problems for you”. However these “invisible symptoms”
can seriously affect how you function and relate to others. Each symptom would
take pages to explain. I will concentrate on some major points and tips for
managing these symptoms.
Fatigue is the most common MS symptom and the most misunderstood,
since everyone is fatigued at times. Therefore, people without MS may think it
is “not a big deal”. However, the MS fatigue can be every day and be overwhelming,
even often a good night’s sleep. It is often aggravated by heat and gets worse
as the day goes on. Managing fatigue is a challenge, which involves many
aspects of living, such as getting adequate sleep, keeping cool, reducing
stress, conserving energy and taking appropriate medications.
Heat intolerance often accompanies fatigue and can bring physical
(and mental) activities to a virtual stop. Keeping rested and cool are the best
remedies. Wearing light clothing, using cooling sprays, wearing cooling garments
(vest, neck collar, etc.) and staying indoors in the heat of the day are
suggestions. The heat related symptoms usually get better in 20-60 minutes,
once you find a cooler and relaxing environment.
Emotional symptoms such a stress, depression and Pseudo-bulbar affect
/PBA(Inappropriate or exaggerated crying or laughing) often call for a
combination of medication and counselling.
Caution and tips: (1) Taking anti-anxiety
medications for longer than 2-4 weeks can be problematic. (2) Counseling may be
a better option to deal with long term stress. (3) Antidepressant medication
may take a few weeks to reach the desired effects. Therefore, be patient and
get counseling in combination with medications. (4) A medication for PBA has
been FDA approved. Ask your doctor about Neudexta.
Memory and cognition problems affect about 50% of people with MS at
some point but they may be mild and not recognized early on. Once diagnosed,
the first step is to evaluate your current medication, which might be
contributing to your memory problems. Also, depression and/or anxiety might indicate
additional problems. In my opinion, medications for cognition have not been very helpful for most people
with MS. Although some doctors prescribe anti-Alzheimer drugs for MS, no drugs
are FDA approved for cognition problem in MS. I believe that cognitive
retraining may be helpful to educate MS patients how to better adapt to a
Stiffness or spasticity of muscles is common. Stretching exercises,
swimming, and physical therapy can help. Assistive devices are available
through an occupational therapist. In addition a variety of medications are
available. Oral Baclofen is often tried first.
Pain in MS occurs from extra stresses and strains on weak or stiff
muscles and joints. Exercise, cooling and minor analgesic medication usually
help. A second type of pain (CENTRAL PAIN) is caused directly by myelin damage.
Pain may be described as burning, pins/needles, dull aching, sharp (including
facial pain/trigeminal neuralgia), band like or stabbing. A variety of
medications, often those used for the treatment of epilepsy may help.. Acupuncture,
biofeedback and often relaxation therapies may also help. Narcotics are usually
not helpful and can result in addiction. Cannabis use is still controversial
and is NOT legal in most states. Long term cannabis effects on cognition in MS
are a major concern for me.
Trouble speaking or swallowing occurs in 20-25% of people with MS.
Speech therapists are qualified to diagnose and treat these symptoms. Ask for a
Bladder, bowel and sexual dysfunction are very common but
underdiagnosed and undertreated. The unfortunate reluctance to discuss these
problems with health care professionals is unfortunate because they can usually
be treated with significant reduction in these symptoms. They are often
associated with social isolation and a lower quality of life, if not treated. Specific
recommendations are numerous. A major positive influence is a shared Communication
between people with MS, their families and their health care provider. Tell the
doctor it like it! Be specific! Be direct! Talk about how it affects your life and
the lives of your loved ones. This
process can lead to better treatment and understanding (and intimacy) with your
In Summary, many “invisible symptoms” can be treated. The key is to
make your health care profession aware of these problems and ask for specific
recommendations and/or referral to specialists.