You have just been diagnosed with Multiple Sclerosis, you are scared, confused, anxious, and wondering what do I do now? Being told you have a disease where the cause is unknown and no cure available can be scary plus overwhelming. All these crazy symptoms have probably been going on for a while and most likely you have been diagnosed with other things before being told it is MS. A MRI and a spinal tap are the two most used tools to obtain a diagnosis but some even have an Evoke Potential test as well. Lesions (more than two) and a history of episodes of weakness, falling, some type of nerve pain, bladder and/or eye issues are usually seen with these test to confirm you having MS.
Your neurologist has probably selected a medication for you to start taking. You are very fortunate in that in this day and time that there is a larger selection of medications available than back when I was diagnosed. Research has come a long way and there are some promising new treatments being tried in studies right now and hopefully will be approved soon. One day soon we will understand why we get this devastating disease and also have a cure available.
The first thing I suggest is to learn everything you can learn about MS from what types there are and what you have, where your lesions are located, and about the medication you are taking including the side effects. Keep a daily dairy of how you are doing, what symptoms you are having, and any problems with the medication. Make a system to help you take your medication at the same time every day or as often as it is prescribed. Join a support group to help meet people who also have Multiple Sclerosis who can help you with different types of questions along with learning new treatments from guest speakers. There are really good support groups on the internet, sometimes being able to vent frustrations or voicing success of treatments are great with like minded people. As great as our family can be with support, often they do get tired of hearing us talk about it, so this provides you with another outlet. Share new information with your family and friends and encourage them to ask you questions. Learn right off the bat that accepting help is NOT a bad thing, and often helps reduce stress when you are not as good as you would like. Whether to tell your employer is up to you, but just know that often times, they know if your work is suffering either from absenteeism or if cognitive issues and distractions are present. It can appear to others that you are lazy if your work declines from what is the norm. If physical disabilities arise making it difficult to perform necessary work duties, you may need to look at something less physical or even the possibility of filing for disability.
What I want you to know that you will probably go through different phases of emotions before reaching the acceptance stage, and that is normal. Don’t be afraid to seek help if you get stuck in a depression stage though. Look for other things to improve you overall health besides just taking medication such as eating health and exercise. There are a lot of different books and articles out there of things people have tried that has helped them. Healthline.com is a great resource on several different topics. Be open to trying new things, you never know what will actually improve your symptoms. Most of all stay as positive because being in a good frame of mind can work it’s own wonders. If you are unhappy with your physician or you can’t open up and communicate with him the way you would like, find a doctor that promotes this! The relationship and trust between you and your Neurologist is very important along with the knowledge that everything that can be done is being done for you.
Least but not last, know what studies are being conducted for MS and the symptoms associated with it. Most of the studies are of no expense to you for the treatment or tests performed and provides an inexpensive way to try things which may not be on the market. I have been fortunate enough to have improved my condition by a study medication but it has also helped financially. You never know where the next magic bullet will come from and what might be the cure treatment.