I had a STAT MRI with and without contrast last night. I haven't been feeling well and have notably worsening tightness (crushing and painful) in my feet and middle torso. Last weekend I couldn't walk around the mall like I normally can (had to cut it very short - unusual for me). I was scheduled to have had my normal, yearly MRI today (was cancelled b/c of last night's MRI) without contrast b/c I have had no new activity on MRIs since I started Ocrevus back in 2019 (so grateful for all those uninteresting MRIs).
Well, 3 new lesions (in total) were found on last night's MRI - T and C spine. Nothing new in the brain from what I can tell from the report (except for all the remaining lesions that have accumulated over 27 years). I haven't heard back from neurologist yet about a next step. I feel a bit let down and afraid. Thank you for reading my update. Any advice or thoughts or strategies are appreciated 🙂
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Elizt3
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I'm sorry you are having a rough time, and for the bad news on your scan. I don't know any tricks for MS hug (if that's what you're describing) but others have posted about it (and it sounds awful 😞). For my feet, I have used a pain gel from cvs, and it helps. It is a huge let down and waiting for the next step is scary! I try to distract myself with something funny or cute when MS hits the fan, because I'm usually too tired and sick to scream and cry 😵💫 I hope you can get some rest tonight 🙏
Thank you for your post. Humor and lightheartedness are helpful - I need practice in that area 😊🤪. I have read posts about the ms hug and tried anything and everything that have been suggested.
It is a bit scary with knowing that you're becoming worse and nobody's able to see you straight away 🫂 I'm a bit like that, but I make fun of my brain & spinal lesions, likening them to a Jackson Pollock painting 😊 I'm happy I've got my husband, who'll walk to the ends of the earth for me, doesn't mind loading/unloading my wheelchairs from his car, doesn't mind that I've got carers coming when he's at work. He's taken his vows, "in sickness and in health," very seriously, though to be fair he's done so already for the 8 years we've just been boyfriend and girlfriend/fiancés. I can't offer any strategies apart from go with the flow. Recognise where you need help and find ways to work around that. Be the warrior you are, especially when battling this disease. Stay strong, because you don't know how strong you are until being strong is your only option.
There’s that bit of humor again! I really need to work on lightning up. I know I tend to be too serious at home and at work.
I agree that we don’t know how strong we can be until presented with the situation. I’m so glad you have a devoted husband. I do have a significant other and he would do whatever is needed to help me. I just need to get over the guilt that I feel about the way this all affects him.
Your husband sounds like my father. He cared for my mom for decades and took his vow seriously.
I'm sorry to hear about these symptoms and new MRI images. I wish I knew of tricks to help with MS hug, but I just had to wait out the months when it bothered me most, as with many other symptoms. Heat definitely made it worse for me. I wasn't on gabapentin when the hug was at its worst, but some folks find it helpful.
I'm glad others brought up humor. Laughing distracts me better than just about anything else. I do sew and quilt, and those things help when I can do them. I wish cooking and cleaning had the same effect! Getting outside, even for a short time, helps distract me; staring at four walls can seem to increase my focus on symptoms.
I hope these very bothersome and painful symptoms let up quickly for you.
thank you, greaterexp. I've had this ms hug (or whatever it is) since June 2020. It is constant and really ramped up over the last month. I have been taking gabapentin like candy and doesn't cut it the way it used to. Hot weather definitely makes it worse, but laying down with a heating pad does relieve it. go figure!?
In terms of laughing, I've been watching Ted Lasso has been a good distraction! Getting outside definitely makes a difference. I'm doing everything I can to keep working - a real way to distract me. thank you for your response. I appreciate the ways you (and lots of other people here) support the many people in this forum. i don't post much; i like to ready what everyone's sharing. I appreciate your support and good thoughts.
I'm concerned, because I've never heard of an MS hug lasting that long. Has anyone looked at your actual spine or checked the various organs? I'm just grasping at straws, but a non-stop hug just doesn't sound right. Of course, MS does like to surprise us with things that no one else has ever experienced.
I couldn't agree more. My neuro also doesn't see that my symptoms fit the "typical" MS hug presentation. He had me evaluated by my primary care dr., a cardiologist (had an echo of my heart), and a GI doc (had an upper endoscopy). I do have gastritis and a hiatal hernia (prilosec and diet changes haven't impacted this hug). I've had a CT of my chest and abdomen (nothing). I also was diagnosed two years ago with Eosinophilic Fasciitis (an autoimmune condition), but my rheumatologist doesn't think this hug is associated with it either. But EF is rather rare, so I'm not sure if she knows.
I'm at a complete loss. I know, I sound crazy. I can't believe all that I'm writing here. I never wanted my health to dominate my life, but I guess that's happened. I exercise, try to eat right, manage my stress as best as I can, have a massage about every 2 weeks, still work full time. Not sure what else to do?
Well, it certainly sounds like you've done all you can do and then some! I'm sorry I can't offer any answers, but just do whatever it takes to stay sane. 🤕 And you don't sound crazy! AI disorders are a real SOB, especially when you have more than one. Maybe you'll become the subject of some scientific paper and be famous, then we can all claim we know you!
Prayers that you can find relief. The spasms in your chest & belly aren't fun. Ice is the only thing that has ever helped me. Heat usually makes it worse. Sorry about the new lesions. I hope you can get them calmed down soon.
Thank you. I appreciate your message. I haven't tried ice since I have used a heating pad for a long time (maybe I'm making it worse in the long run with the heat? it relieves the pain while I have it on, but once I get up, the pain comes right back). I'll try ice tonight to see what it does. I think I went to a heating pad b/c I'm often cold and just stuck with it.
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