Why was I still considered stable when clearly my disability had progressed?
It’s time to change some of the terminology, re: MS!!
On my last MRI, my neuro, who I am very happy with said, I was stable. The reason was that I had no new/active lesions.
False sense of security
This gave me a false sense of security. I had to call and ask her, "If I am stable why is my walking getting worse?” I was then told I probably had moved to SPMS, but am still termed stable. After a year of stress, my elderly parents had a near-fatal accident in Fl. My brother – who doesn’t have MS – and I alternated visiting them every other month until they have almost fully recovered. My brother is in CA, I am on the East Coast.
Considered stable though my disability had progressed
I traveled mainly by myself, utilizing airline wheelchair assistance, mostly by myself with a few rare occasions when my husband could accompany me or when my brother and I could overlap our visits. So why was I still considered stable when clearly my disability had progressed? Terminology needs to be more accurate. Let me know how you feel.
Thanks and try to stay positive, Lisa 😜
Thank you @Lisasnyc, I definitely agree that there are a lot of terms that go alone with MS that should be revised. In your case, your disease activity may be stable, but that doesn't everything great. I often take issue with the term "relapsing-remitting" for similar reasons. The disease may not be especially active all the time, but that doesn't mean that you only have issues during a "relapse" It certainly may seem that way at the beginning of the disease, but each relapse does damage. Just because a "relapse" (another word I hate) is over, doesn't mean your fine. The myelin that was damaged during the relapse, is still damaged. No matter how you seem (especially early on with the disease), that damage is there and all it takes is some kind of trigger (https://multiplesclerosis.net/living-with-ms/what-to-know-about-ms-triggers/) like stress, to bring it forward. So I very much agree, there is a lot of terminology around MS that could use a revamping!
Hi @lisasync, I'm so glad Devin jumped in with some great information. I thought I would also share Lisa's great article, which may answer some of your questions.
I also wanted to say I'm so glad to hear that your parents came through okay. Thanks for being here! -Warmly, Donna (MultipleSclerosis.net team)
Thank you Devin and Donna for responding to my article/question!! I appreciate the article on triggers, very insightful. Devin and Lisa I appreciate your perspectives!!
Thank You all, Lisa
