Happy Halloween 🎃. This is the last day of October MS Awareness Month. I woke up this morning at 2:58 am, teeth chattering, whole body shaking and curled in the fetal position. Did I take my Aleve yesterday? Nope! So here I am experiencing flu like symptoms associated with my medication. As soon as I stretched out to get up to grab the Aleve I knew it was all bad. My right leg locked into place and my left leg had a cramp shooting up the back. This is one of those times I wished I lived with someone. Specifically a significant other. It was a small challenge getting off the toilet. Lol. I know, TMI 🙄. Anyway, lesson learned.
So it is levels to this multiple sclerosis shit. Lol. I am still on the lowest level, relapsing remitting. Or so I thought. Studies are now talking about Clinically Isolating Syndrome (CIS). It is identified as having symptoms of multiple sclerosis but cannot be confirmed through a MRI, yet. They may start a person on disease modifying medication to slow down or delay the progression into full blown MS. This information is new to me. I did know about the other types that I am going to discuss in this post. The next level is secondary progressive multiple sclerosis (SPMS). Then there is primary progressive multiple sclerosis (PPMS). And this level they rarely talk about any longer, progressive relapsing multiple sclerosis (PRMS)
Relapsing remitting MS is when a person will have an episode/relapse and the symptoms retreat/remit on their own or with the assistance of steroid medication. The majority of people, about 80%, who are diagnosed with MS start at this level.
The next level, secondary progressive MS, effects people who start with relapsing remitting MS. This level is determined by continued loss of function and abilities with little remittance. There may be times were it stabilizes and a person does well, but it continues to decline. A person with this form of MS may go from using a cane to a wheelchair.
Primary progressive MS is similar to secondary progressive but this is the level you start at. It is categorized by a steady decline of one’s health and functioning with no remittance. A person with this form of MS can have brief periods where the disease is stable or there is progression without any new lesions. This type of MS affects about 15% of people who diagnosed.
Then here is the obscure MS, progressive relapsing multiple sclerosis. Similar to primary progressive MS, this type steadily worsens from the onset. Symptom flare ups with or without remissions are present as well. As more research is done and types of MS are being reclassified, progressive relapsing MS is not being labeled as much. To me, it sounds just like primary progressive MS. That may be why they are getting rid of this label.
Well I hope that the information I have shared this month shined a little light on this growing disease. This is a link to the National MS Society that includes graphs of how each progress over time.
When I was diagnosed with MS I only knew of famous people that had it. Now I know about 6 people who either already had it or have been diagnosed over the last 10 years. Smh. I think I get so annoyed that more and more people are developing this disease and the researchers still don’t have a clue why. The information in regards to MS is stagnant. Really no new developments over the last 40 years. The only thing that has changed is a growing list of new medications.
If you know someone with MS or you have MS and would like to share your story, please email me at elsims27@yahoo.com. I want to share my platform. If you have any questions about MS after reading these posts, leave a comment below or you can message me at the email above. Be safe this Halloween night. And continue to be well and whole. Much love 🧡 💚