Disease-Modifying Treatments and What Comes Next for MS Patients
Just over a year ago I was recruited to write here at HealthCentral and I have enjoyed it very much. For a peek at those early days, you can find my first posts here:
- "Oh What a Beautiful Morning, Oh What a Beautiful Day"
- "I had to learn to reconstruct my life" - Jacqueline Du Pre
The year has certainly flown by quickly as I’ve enjoyed sharing bits of my life with you. The frequency of posts, as well as their length, has changed and we’ve had new experts join us and others move on, but it is the sense of community and the level of discussion which has stayed inspirational.
To celebrate our community and to highlight some of my personally favorite, and most useful, posts from the past year, I’ve incorporated links to the best of the best in the following piece. Enjoy.
From the beginning, we all wonder “do I have MS?” and question “what does it take to get diagnosed with MS?” But before we can understand the multiple sclerosis diagnostic criteria, we need to know what is a lesion.
You might wake up one day and say, “my fingers are numb, should I call the doctor?” There can be many reasons for the numbness, so before consulting with a neurologist, it is wise to prepare for your doctor’s visit.
After receiving the diagnosis of MS, others might ask what type of MS do you have? You may wonder what is my prognosis? or what will tomorrow bring? You might worry about disability scores or consider participating in a clinical trial for MS. Be sure to obtain MS publications available for free, especially if you are curious how many people in the US have MS.
While you are in the shock, anger, denial stage of reacting to your MS diagnosis, please take a moment to pause before deciding who to tell about your diagnosis. I suggest that you start with your family and very close friends before considering your colleagues and then ultimately the world.
After discussing the disease-modifying treatments with my neurologist, I chose to use Copaxone to treat my MS. For those reader who have difficulties with the injections, I hope you find these 7 Tips for reduced pain and skin irritation very helpful.
A common question which arises is whether something is an MS relapse or a pseudoexacerbation. Sometimes symptoms can be a result of overheating, but sometimes they are a full-blown relapse. Each time I’ve had a major relapse, we have chosen the use of Solumedrol to treat it which doesn’t come without drawbacks because “Solumedrol is All the Rage!”
Unfortunately, nobody ever said that MS was inexpensive. In fact, here is my annual cost of having chronic illness. I have often wondered if health insurance coverage protects from catastrophic health costs as I ask, “how am I going to pay for this?”
Fortunately, if you need help paying drug bills, there is financial assistance available for your MS medications. In fact, there is financial assistance available for other MS-related needs too. Before a diagnosis is a flicker in your eye (or rather brain), you need to know the basics about obtaining health insurance.
When learning to life with MS, we must also learn how to manage many of its symptoms. Fatigue is very common for MSers (people living with MS) and I have chosen to use Provigil to battle this fatigue. Another common symptom is spasticity for which I take Baclofen and do regular stretching to combat its effect.
Other common symptoms include bladder dysfunction, bowel dysfunction, and speech dysfunction. Most distressing are symptoms which cause sexual dysfunction because they can affect sexuality and intimacy. It’s very important to educate ourselves regarding sex toys, tips and tools to help overcome sexual dysfunction.
To keep a sense of humor about living MS, I shared a few stories while laughing at myself. I hope that you were able to have a chuckle too.
- "Paging Gimp Lisa - Your Party is Waiting at the Farthest Baggage Carrousel, Move Quickly"
- "Frankenstein, Ginger, and Me"
- "Free Falling and other Silly Human Tricks"
- "Watch Out!! Be Careful - Numbness, Paresthesia, and Multiple Sclerosis"
- "Hey!! Turn up the lights and pass me some color!"
- "Bouncing Around: Doctors and Eyes"
Sometimes we don’t feel like laughing at ourselves, especially since depression, inflammation, and multiple sclerosis can be closely related. When cognitive functions begin to slip, we need to consult a neuropsychologist. But hopefully, your MS will not be seen as psychosomatic or the result of a mood disorder by the uneducated around you.
Thinking of those around us, there are resources available to address the impact of MS on your children. You may also wish to examine the relationship between the caregiver and the MS patient in order to separate MS from yourself. You are not your MS!!
“If I’m not my MS, then maybe I’m my RA.” OK, I’m being silly. But sometimes when you have one autoimmune disease, it seems much more likely to develop another autoimmune disease. For me that second diagnosis is rheumatoid arthritis. Certainly there are days during which I ask, “Is it, or isn’t it, MS which is bothering me right now?”
No matter what may be bothering me, MS or RA, I continue to give thanks for my blessings. As we continue to empower ourselves and each other, I wish you peace and blessings of your own.
Thank you for a wonderful first year here at HealthCentral.