Multiple sclerosis (MS) is the most common neurological disorder diagnosed in young adults. Although the disease may not be cured or prevented at this time, treatments are available to reduce the severity and delay progression.

What does it mean to be newly diagnosed?
Possibly, you have never heard of the term MS before, or, if you had you may have easily dismissed it. Now, however the term is linked to you personally, you have MS. It becomes the diagnosis that belongs to you alone.

What does this mean? You may feel frightened and very much alone. You may feel you have lost your compass, your perspective, and everything experienced now is under the cloud of this new label, “MS patient,” that seems to belong only to you.

	Key Facts 1. MS is more likely to progress if you are not on treatment. 2. Earlier treatment gives you the best opportunity to minimize the chance of disability later in life. 3. You should be on the most effective treatment available. Efficacy is more important than convenience. 4. All of the approved drugs for treatment (Avonex, Betaseron, Copaxone, Novantrone, Rebif) help; some are more effective than others. 5. Convenience of subcutaneous injections given at home are enhanced with an “autoinjector.” 6. Drugs may have side effects that can be prevented or minimized. • Subcutaneous skin reactions are reduced with an “autoinjector” and a clean, dry needle. • Interferon’s (Avonex, Betaseron, Rebif) flu-like side effects reduced with dose escalation and ibuprofen or acetaminophen and/or low dose prednisone. • Copaxone’s “systemic reactions” are brief with no lasting consequences. 7. Those not responding as well to Avonex, Betaseron, Copaxone, or Rebif can take Novantrone for only two to three years due to potential heart toxicity. 8. DO NOT DISCONTINUE ANY THERAPY WITHOUT TALKING TO YOUR DOCTOR FIRST.

You may experience anger at the medical professionals and your inability to understand what is happening to your body. Your family wants to support you, but at times it seems that they are in need of reassurance from you. Worst of all, they may look at you differently. Often medical professionals, your friends, and family do not seem to understand how difficult this is for you, forging a new identity as an MS patient.

Things You Can Do
When you visit your neurologist, it’s helpful to prepare yourself by writing a series of questions and concerns in advance. You may even decide to interview the neurologist before you make a definite selection. Asking questions like, “What happens if I have a new symptom or if I have questions between visits?” In addition, you should be keeping you own personal journal. You are the best reporter of symptoms to the neurologist.

Questions should be asked during the visit about a total plan including nutrition, vitamins, exercise, aquatic therapy, physical and occupational therapy.

Equipment concerns should be acknowledged. Should a cane be used during an exacerbation period when you are experiencing balance issues? If you enjoy shopping for long periods, would a wheelchair be helpful to deal with a fatigue issue?

The key is to consult with the medical community, the social worker, etc. as to what the obstacles are and how everyone can work together to provide solutions.

Family and Emotional Issues
Explain to your family that you still are the same person that you were before the diagnosis. You know they do not have all the answers. Share with them that you may have good days and bad days and welcome their support through this process. If they can be present for you and just listen, the experience will enrich both of your lives.

If You Have Children What Do You Tell Them
It is important to be honest with your children. They know when you are secretive or elusive and that becomes more frightening, coupled with a child’s imagination. Remember that a child’s attention span is short. Find out what the child already knows and then share pieces of basic information, as tolerated. Explain to the child that you are still the same person. Families are always evolving and changing, just like life, but family members can support one another and overcome obstacles. By sharing your experiences in coping with MS, you are teaching your child about life and its evolving process. Families never stay the same; they must constantly reinvent themselves to make it all work.