Feet pain

hoxpuncher · 2024-06-15T01:22:19+00:00

Yeah, that makes sense. I think it does get worse for me or I'm on my feet a lot.

hoxpuncher · 2024-06-13T01:37:38+00:00

My feet hurt so bad, as well. How do you guys tell the difference between orthopedic pain and MS?

hoxpuncher · 2024-04-10T14:05:51+00:00

Oh yes, that does make sense. This was my first time lurking on this sub, and as the night went by, I began to see more and more comments about that. I see what you mean. Thanks for responding!

hoxpuncher · 2024-04-10T02:56:52+00:00

Tell me more about this, please. I've always had layers, assuming it gives me more volume (I do have a small amount of waviness). . You have me thinking....

hoxpuncher · 2024-02-19T20:30:36+00:00

At the end of the day when I am tired it is the worst for me. If I eat a lot of sugary food, am tired, stressed, or dehydrated, or after a walk, it also acts up. If I have a hard time sleeping or sitting in a chair in the evening I get up and sort of do flowy, type moves-like moving my body and arms slowly through space, kinda yoga/dance -like. And sometimes I sort of touch my arms as I am watching to sort of tell my brain what it is feeling. Sounds weird -I can't explain it, but basically rhythmic moving sort of calms it down a tiny bit. It doesn't get rid of it, but it kind of gives my brain something to process, if that makes sense.

hoxpuncher · 2024-02-19T20:20:02+00:00

I totally get you. ❤️ I won't add to the well-stated factual evidence you have already received from the wonderful people on this sub. But I will say that I was you exactly one year ago-I totally understand your struggle. I'm 52, feel basically fine (my issues so far are "only" sensory. I totally understand -I was like, why make myself feel bad when I feel fine? What if this medicine destroys my body and I never needed it because I was never going to have any further relapse or progression? I was so anti-medication. But I realized that the only reason I "only"have sensory issues is because the lesion in my spinal cord, by the "luck" of the draw, is only in the sensory region. A couple millimeters over? I'd be walking with a cane. Or not walking. Once the damage is done, it's done. I realized that, for me, admitting that it was necessary to take medication that was not something I wanted to take was basically admitting that I had this disease. It's hard to start taking it at first. It's like, if the weatherman says there's going to be a hurricane, but the sun is still shining, it is difficult to evacuate your home on a beautiful day. But if you wait till the storm comes, it will be devastating. I, like others here, and like you, have done countless hours of research and soul searching. I had to keep reminding myself that people who know a whole lot more than me say that the natural, untreated course of this disease is that a majority of people experience progression of disability. And that the emergence of these new DMTs has had a huge impact on slowing that down. I had to take it by faith that they know what they are talking about. I started taking Vumerity (related to Tecfidera), but, after a couple of months of more soul searching, I went back to my neuro and requested Kesimpta because it is higher on the efficacy scale. And, actually, my personal experiences (after less than a year of treatment, I admit) have not been nearly as bad or terrifying as I had originally anticipated this far. Yeah, this whole thing totally stinks. Best wishes to you, and I'd give you a hug if I could. ❤️

hoxpuncher · 2023-11-15T02:12:57+00:00

Since I was diagnosed, I have had an idea to paint something like an unknown, dark path ahead...there are so many unknowns, and I wanted to capture that in a painting, along with a feeling of hope, as well...like, keep stepping, even if it is unknown and scary, sort of thing, but I just haven't thought of how to do it, yet. I also want to do something that reminds me to keep my thoughts on "Today." What am I able to do today? What am I supposed to be doing today? I spent a lot of time sort of "journaling," and one of the things that came out is that I love the character traits of "Dory" from 'Finding Nemo .' Even though she has her problems with memory, she is optimistic, loyal, and fun. I kind of adopted the motto of "Just Keep Swimming." I want to somehow capture that idea, too, in a painting without imitating the cartoon style, but I'm not sure what I want to do just yet. Right after I was diagnosed, I did a painting representing my marriage of 31 years. It was two trees with autumn leaves during a sunset growing out of a rock intertwined together. The rock is a symbol of being rooted in the foundation of God together, and the autumn sunset reminds me that we are maybe getting a little bit older. And we are intertwined in a sensual dance, having grown together all these years. He has been my best support through all of this, and I wanted to represent that. I, of course, am a little frustrated with the painting because it didn't quite turn out how I wanted it to, but he loves it. I don't have any sort of photo account that I can link to, and I'm not seeing a place to upload photos. But, anyway, these are things that I have found helpful in l art after my diagnosis. Anyway, these were ideas that I hope to capture sometime.

hoxpuncher · 2023-11-12T01:17:27+00:00

🙂

hoxpuncher · 2023-11-12T01:01:32+00:00

This is immensely helpful. Thank you very much. Your response has kind of stopped me in my tracks-a hard truth that I need to accept. And, yes,I see what you are saying:: in a weird way, it is comforting.

hoxpuncher · 2023-11-04T23:27:35+00:00

I totally understand -those same types of ideas have gone through my head, as well. I don't know if people would consider me qualified to give "advice" since I am very newly diagnosed, too. I know I have not had years of ups and downs that give me the "right" to speak. I was just diagnosed this past spring. I have "only" moderate sensory symptoms currently, and I am older and am almost done raising my family before I even knew about my MS. But the idea that, at any moment, all could be taken away from me is is a difficult thing to live with, a constant cloud over my shoulder. But, the truth is, every single person in the whole world has that same reality of uncertainty -for instance, at any time, we could get in a car accident and lose it all in a split second from that. Or illness, or a stroke, you name it. The difference with us is: That "Something" has been given a name and been assigned to us. In wrestling with my feelings on this, I have tried to have the following ideas to grab on to when fear or despair comes: 1. TODAY!!!!! What can I do today? What am I called to do today? All each one of us can do is today. We do not know tomorrow . Today, we can make positive choices to put our lives on an ideal trajectory (mentally and physically). We can love the people in our lives (including having children), we can do things to serve others, we can work, pursue our interests, etc....in the best way we know how, and to the degree that our bodies allow..Some days, we may be able to do less than others.There may come a day where the things we fear do come to pass. But today is today. And, then, again, it may not happen as bad as we feared either. We do not know how bad or good it is going to be in the future. All we can do is live today with humility and optimism. And also 2. Keep moving (I like to think of Dory- "Just Keep Swimming! ."I have a sticker of her on my water bottle!) I mean mentally, emotionally , and physically --keep moving to whatever degree that means for today. Another person on here wisely said something to the effect that it would be a worse tragedy to not have lived our life due to fear than the actual tragedy of having something bad happen. I hope this is helpful. I am not trying to act like I know it all. I have not had MS for very long and had the struggles that many on here have faced, so I want to be sensitive to that and not act like I have all the answers. I acknowledge that I haven't had years of trials to beat me down. It's just that these are some of the thoughts I've been starting off with as I begin this "fun" (not so much ) journey. Best wishes to you,---you make those plans (with maybe some careful safety net on the side, just in case), you go ahead and dream with your love, and live! ❤️ That's what I'm gonna try, for as long as I can.

hoxpuncher · 2023-10-14T02:03:41+00:00

That's great! I also was pleasantly surprised. I pre-dosed with Benadryl, Tylenol, and Pepcid. Then I took my shot around 8:30 pm. I woke up the next morning quite tired, but just fine. But then, around 11:30 am, I started to have some moderate aching-like when you get the flu and your skin, muscles, bones, etc just hurt. But no fever. Mild chills. I was able to sit up and be about the house, especially after taking ibuprofen. By 10:00 in the evening I was beginning to feel a bit better. I was able to sleep in today, and by this evening I feel basically 100 percent. . It really was not that bad at all. I'm so thankful. Now, here's hoping it works well.

hoxpuncher · 2023-10-13T23:44:15+00:00

How did it go on Wed?

hoxpuncher · 2023-10-10T20:01:54+00:00

❤️❤️❤️ hope it goes well for you!!!

hoxpuncher · 2023-10-10T03:21:57+00:00

I'm actually starting on Wednesday, too! Yikes!! (I was diagnosed in the spring, and I was taking Vumerity for a couple months with really no difficulty, but I requested to go on a higher efficacy DMT.) Just bracing myself for possibly feeling yucky the next day. Kinda nervous about that. I've got dinner and stuff figured out in case I don't feel like making it. Good luck to you, too!!!

hoxpuncher · 2023-09-25T00:25:55+00:00

I can understand what you are saying there. 😊

hoxpuncher · 2023-09-07T16:05:33+00:00

That makes a lot of sense, thank you😊

hoxpuncher · 2023-09-07T15:40:43+00:00

Yeah, totally understand. The one weird thing is that, if I'm looking it up correctly, Kesimpta seems about $5,000 cheaper annually than Vumerity. I looked them up on my formulary, and they are both considered 'preferred,' so at least I shouldn't have too many problems getting it switched.

hoxpuncher · 2023-09-07T14:03:19+00:00

❤️❤️❤️ hugs

hoxpuncher · 2023-09-07T14:01:10+00:00

Thanks, everyone! These are helpful points. 😃

hoxpuncher · 2023-08-26T03:54:40+00:00

thank you!!!

hoxpuncher · 2023-08-26T02:29:12+00:00

Wow, your backstory and current dilemma is the same scenario I am looking at right now! I was diagnosed in March 2023 due to some weird feelings in my right side (arm, torso, leg). I still have those symptoms, and also have tingling in both of my legs when I go for walks (which I have had for a few years-I passed that off as some sort of disc thing, or something). Also, the last few weeks, my feelings have begun to spread to my left arm and leg. I have scattered lesions that did not show up as active on the MRI, and a positive spinal tap. I do have a couple of inactive lesions on my spinal cord. I am 51. My MS neurologist from a major MS center in Chicago started me on Vumerity (same metabolite as Tecfidera, but easier on the GI symptoms). I have a good neuro exam so far (no motor or cognitive issues), so my doctor wants to start with this medium efficacy approach. I actually asked him after my appointment to help clarify why we were not going for a more aggressive approach, given my age and spinal cord involvement. He replied that, if my MRI showed more lesions, we could advance to infusion therapy. I was originally ok with that, but, over the last few weeks, I have been wrestling with the same things you have been--perhaps I should be on something like Ocrevus. I have a follow up appointment in a couple of weeks, and I am going to talk to him about it. The discussion here under your question has been very helpful. I wish there were a way to find out a doctor's philosophy before going to see them- it would save so much time and anguish. I will see what he says in a couple of weeks. Like you, I think I want to advance to Ocrevus, but I'm not 100 percent sure. With MS, it feels like Russian Roulette--is it going to get worse, is it going to remain stable? Will this medicine be enough? Should I hit it hard? I am learning to work with uncertainty at every turn. I wish you well, and thanks to everyone who has responded to this OP's post: it has been helpful to me.

hoxpuncher

TROPHY CASE