Multiple Sclerosis (MS) is one of the most confusing diseases for those who do not have it and even for those who do. For example, I feel great (always have), don't look like I'm sick (never did), and I'm not in any pain. However, I am quite disabled by MS.
I have a lot of nerve damage from the disease that causes my disabilities. Each person with MS is unique, a snowflake if you will. We are all affected by where MS has attacked us. I have a lot of lesions (nerve damage) on my brain and spine, but mainly have issues with walking and balance.
Some people with only a few lesions are more impaired in more ways than I (including, but sadly not limited to, experiencing debilitating pain, fatigue, brain fog, heat intolerance, and the list goes on). There are people with MS who compete in all sorts of sports (typically those who are diagnosed with relapsing remitting MS) and there are people who cannot get themselves out of bed (typically people who have a progressive form of MS). There is not a one-size fits all medication, diet, vitamin etc. regime for people living with MS. That's tough to wrap one's head around. When a person is classified as relapsing remitting MS, there are more options for them to combat the symptoms of the disease, but with progressive MS there are hardly any and that is not to say one course of the disease is easier than another. It's all hard.
Try searching for solutions for managing progressive MS online. It's depressing because there isn't much and I'm being generous by stating that. The medications have very low efficacy rates and if they do work, all they do is delay the inevitable and typically have pretty terrible side effects.
HSCT is the closest treatment to a cure that MS has ever seen. However, the treatment is not 100% effective in halting the disease in it's tracks and has not been FDA approved in the United States to treat MS. The treatment can reverse symptoms for some people, so there are people who have had HSCT and consider it a cure to MS. As you know, I am a non-responder to the treatment and it is up to me to find solutions because when you have MS you must be your own advocate. The only options my or really any neurologist can recommend are drugs and physical therapy. I have no desire to take the drugs and my workouts are beyond physical therapy.
How Things Stand Today
The medication I was taking to help me walk, Ampyra/Fampyra, stopped helping a few weeks after I started taking it. I do not know why, but suspect it is because I continue to decline physically. In addition, I could not afford it with my insurance even after I finally got Blue Cross Blue Shield of Texas to cover it. I have almost a year supply of the medication at home from a friend who got the pills for me at a much better rate. I am still taking it figuring there is no great harm and hopeful maybe it will help again like it did twice in my past.
I can still take some steps unassisted, but if I go anywhere, I have to be in a wheelchair. Mentally, I am totally okay with this. However, it brings about challenges and means I am no longer independent. This is a total life change for Steven and me.
On a positive note, I am still working out six days a week and am working full time (at home). My trainer and my office have been wonderful accommodating me and I have all the equipment I need at home to have a meaningful workout and be productive with work during COVID-19. This is one of the many reasons why I consider myself one of the luckiest unlucky people around.
Note: Hair pictures may be found at the end of this post😏.
Information on the Types of Multiple Sclerosis
The following is information from https://www.multiplesclerosis.com/global/treatment.php describing the different courses of MS.
THE FOUR TYPES OF MS
There are four types of multiple sclerosis (MS), named according to the way the disease acts on the body over time:
- Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 75% to 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. Relapses typically last a few days or weeks. At other times, the symptoms seem to disappear and this is called a remission; however, MS is still active and can progress. Damage to nerves can still occur even though there are no symptoms.2
- Secondary-Progressive MS (SPMS). In SPMS symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Before disease-modifying therapies became available, historical studies indicated that about 50% of people with RRMS progressed to SPMS approximately 10 years after their first diagnosis. Long-term data are not yet available to determine if treatment significantly delays this transition.2
- Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions.2
- Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery2
Hair!!!
Hair at 16 Months Post HSCT
Note: I had a hair trim and colored the gray the day after this picture.
Hair at 17 Months Post HSCT
Hair at 17.5 Months Post HSCT Straightened - PONYTAIL!!!
Hair at 18 Months Post HSCT
Hair at 16 Months Post HSCT
Note: I had a hair trim and colored the gray the day after this picture.
Hair at 17 Months Post HSCT
Hair at 18 Months Post HSCT
