20+ years with MS and Facing a Scary New Symptom
I have had MS for over 20 years, and the pain I experience is debilitating. I cannot spell simple words, along with all the symptoms listed in your articles. Now, I have a new symptom. I am on Ocrevus infusions, but I haven't seen any physical improvements.
My question is for anyone out there. I feel stuck in pain. I lean heavily over to my left side, which I assume is my weak side. I sit, walk, and do everything leaning over to that one side. I am currently using a walker to try to straighten myself up a bit, but walking sideways really hurts my back. I frequently fall on that left side, I even shattered my elbow once trying to break a fall.
I am hoping someone knows something about this symptom. I went to a pain clinic once, but they made me feel dumb. They said it was 'all in my head' and told me to 'just straighten up and stop thinking negative things.' But I don't do that. I am truly experiencing this, yet they told me I was just 'compensating' for the pain.
I hope someone can shed some light on this matter. Thank you.
Hey, you are NOT dumb! That pain clinic is way out of line for telling you that stuff. I always lean to my right side, which is my weaker side. It's also very inconvenient since I'm right-handed, but that's the way the cookie crumbles, like my mom used to say. If I'm at home, I sometimes lean way over to the left, then try to wedge pillows under the right side to compensate. Sometimes it works.
Anyway, I'm so sorry that you're hurting. Me too. Wish I had some great tips to make it feel better. ❤️☘️
Hi! I'm so grateful for your post.. I haven't been courageous enough to post until now so thank you!
Please don't beat yourself up IT'S NOT YOUR FAULT. I can't say enough about doing my own research since I was diagnosed with PPMS January 2nd 2019 at age 63. I'm fortunate that I was connected with a brilliant neurologist following 2 months of hospitalization. Since then I have lost all friends and family and am now alone. As you know MS is a tough disease for us and also way too much for them
My pain is also unbearable most days but my doctors believe me and treat it with heavy pain meds which help me semi function
I've tried steroid infusions and two other DMs and finally had life threatening reaction to Ocrevis. Since then I've discontinued those treatment attempts
I so wish I had a some suggestions for you. Luckily I've been a positive person for most of my life; between that, a kick ass sense of humor and indulging brief pity parties when it feels hopeless, I get by.
Now (cuz of your post) I am seeking support for my LONELINESS. This is a tough one to fix alone lol
You are loved and understood by me and more people on this site..
Thanks again and I'll have your back,
DonnaHi,
!
I can't really add to whatand (Donna) shared. You should not have your pain or your symptoms minimized!
Have you talked to a specialist about the weakness you are experiencing? I know you know this, but the constant leaning to one side may very well exacerbate the weakness and pain, so finding a specialist who can offer some treatment and mitigation options can potentially help with the pain.
Again, you deserve to have your symptoms and concerns properly addressed and treated, when possible!
I am glad others chimed in to let you know that you are not alone in this.
Best, Erin, Team Member.I have an idea that has helped me a lot and I hope might help you: I found a local MS support group that meets weekly, both in person and on Zoom. So far, I've only attended the Zoom meetings, but it's really theraputic for me to talk to other MSers and be able to say things that we don't discuss with the normies, especially the dark stuff that they can't handle. Also, laughing at the stupid stuff they say to us is always fun as well. Here's a link to find a group if that interests you:
https://www.nationalmssociety.org/resources/get-support/find-support-groups-and-programsClick here
