Those diagnosed with multiple sclerosis have many options when they first find out they have MS. Usually; the MRI or spinal tap confirms the diagnosis. Once it is official, they will have several questions; most cannot all be answered in just one visit to the neurologist. As days and months go by, more questions will emerge. It is advised that any questions one wants to ask the doctor should be written down so they are not forgotten. It is important to remember that the doctor’s time is limited and questions should be kept to a maximum of three per visit. First, their neurologist will give them the option of which drug to take. Once they decide on the drug of choice, the website will direct them to the drug company’s available resources.
However, there are several other resources where questions that come up can be answered immediately. For whatever drug you are on, there are resources available both day and night. You can speak to a nurse any time, as they are on duty 24/7. For most drugs, there are peer groups that enable users to find people with similar stories they can relate to and compare notes.
The greatest resource, in this writer’s estimation is the ability to attend live events presented by the drug companies. During these events, doctors, nurse practitioners, nurses and designated ambassadors who themselves use the drug represented will tell their stories and explain about the effects of multiple sclerosis. As a caregiver, I have attended several events from different drug companies, and always come away with new information. Recently, I learned something that has been puzzling me about my husband’s condition for some years. When I explained to his doctors about the fact that he seemed to jump in his sleep many times during the night, it was believed he had restless leg syndrome. During a recent live event, a nurse practitioner mentioned myoclonus. This is a symptom, not a disease where involuntary jerking of a muscle or group of muscles is sudden and followed by relaxation of the muscle. Since learning about this, he has been given medication that has lessened the symptoms.
Check the website or if unavailable, call the toll-free phone number on the medication and explain your concerns. You will be directed to someone who can address any questions or problems you may be having. Ask about the live events in your area and attend with your caregiver. You will meet nice people there who will share their stories with you and take away any qualms you may have. There are always question and answer times after every speaker is finished and don’t be afraid to ask, because someone else may be wondering about the same thing, and too shy to ask.