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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

Invisible Symptoms

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 failing memory.

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 referral.

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 loved ones.

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.

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