Multiple Sclerosis Leg Weakness And The Treatments I have Tried

Рет қаралды 2,769

Күн бұрын

Thank you for watching @SaraslivingwithMS . I created this channel for multiple sclerosis awareness and support. This is my experience with treatments for my foot drop, leg weakness and spasticity.
Please subscribe: / @saraslivingwithms
My videos do not provide medical advice and are for informational purposes only. The videos are not a substitute for professional medical advice, diagnosis or treatment. Please do not disregard professional medical advice or delay in seeking it because of something you have read or seen in any of my videos.

Пікірлер: 49

@donnamoore8479 Жыл бұрын

Pay attention to the hip. I didn't and even using the wheelchair is uncomfortable. Unless my hip is properly placed my leg is very painful.

@SaraslivingwithMS Жыл бұрын

Yes agree. I had no idea my hip was weak and wasn’t paying attention to it. I am sorry to hear it is causing you pain. I go on a mobile bike because that is supposed to help strengthen it.

@donnamoore8479 Жыл бұрын

@@SaraslivingwithMS yep, I did that as well. It worked for a bit. Guess I walked wrong for too long. Take care.

@hittanamo_89 Жыл бұрын

Thank you for your channel Sara 🌸♥️ And I'm sorry you're in pain Donna 😔♥️ Could you explain this further? If it feels okay. How can you walk "wrong" and what can you do about it/your hip? I'm worried about this part, although I'm I'm not doing enough (like exercis) to strengthen my legs (and now hip too if I don't understand you wrong?), so my left leg gets tired after a little while and I used to fall down a lot, I'm better at noticing when I need to stop now-ish 😅🙈 I got my diagnosis in 2017, and the neurologist here in Sweden did not take me seriously at all. It wasn't until I couldn't eat with cutlery anymore that he finally, but hesitantly, sent me to get an MR. I had so many plaques on my brain, he apologized so much, said he wasn't able to sleep for days, showed a chart of how only 1 percent of people with MS has tremor... I went alone unfortunately, or maybe not, I wanted to melt the information on my own and not be affected by my parents response too, I know they wish they were with me, but I felt like this was the right choice for me, but I feel so bad for my parents. The neurologist was so apologetic when I was there alone, but so unbelievably rude when I had my parents with me, they did not deserve that kind of treatment after ignoring me until I wasn't able to stop shaking and now have to eat Iktorivil for the rest of my life and hopefully it will work for as long as I live, but seriously not okay 😔♥️

@famasmaster2000 Жыл бұрын

You always put out a video with such helpful information. Good on you for remaining so strong, don't give up on the workouts, you are being a tough cookie and an inspiration to all of us going through a lot of the same thing. Blessings to you 🙏 Keep up the hard work and positive attitude 💪

@SaraslivingwithMS Жыл бұрын

Thank you! I had a very eventual last week that I will have to share. They think a reaction to the walking medication I have been taking. I guess I am just super sensitive to medication!

@Velkro5000 Жыл бұрын

Thanks for this. I'm weary of neurologists after my experiences and studies.

@drn7481 Жыл бұрын

You have given the best information so far. Thank you.

@SaraslivingwithMS Жыл бұрын

Thank you so much!! ❤️ I wanted to provide the honest truth and my experience. I found it very difficult to find honest information out there and not someone trying to get my money with a “miracle”

@feliciasewell384 Жыл бұрын

Hi Sara I also have MS I just got my bioness unit before that unit I used AFO’ s some tore my shoes the other was bulking . I have with shoes they don’t seem to stay on my right feet . Thank you for your channel I hope you can encourage others 😊

@SaraslivingwithMS Жыл бұрын

Thank you for your comment! I hope the bioness improves your mobility like it did for me! I can’t wait for summer when I can wear shorts!

@deedew6430 Жыл бұрын

So glad I found your channel, I have so many of the same issues you have discussed. My left leg is affected and I have edema around my thigh area. Cannot walk for long and cannot tolerate shoes that tie on top of my foot. My feet burn on the regular. Drs I have seen said it was from spine issues which I do have. Just had a fusion done to my S1 sacarilliac joint but it did not help my hip n leg n foot issues. I have restless legs at night also. You are very inspiring, Thank you for sharing your story.

@SaraslivingwithMS Жыл бұрын

Thank you!

@colleensmith3374 Жыл бұрын

Hi Sara- great info & thank you so much for sharing what works & mostly what's a waste of time. Much appreciated. I was diagnosed coming up on a year in March & on Kesimpta. It's still surreal however, trying to embrace. Yoga, pilates, seem to help me. I am in Colo if you ever want to connect.? Not on social media so you can reach by my email. Best to you always. You are very genuine. Colleen

@SaraslivingwithMS Жыл бұрын

Thank you so much! I will reach out

@tenminutetokyo2643 7 ай бұрын

I found distance helps. First 2-3 miles seem impossible but by mile 6 it's a lot easier.

@SaraslivingwithMS 7 ай бұрын

Do you have any leg issues?

@GIBKEL Жыл бұрын

I got misdiagnosed with tarsal tunnel when it was MS. It was a miserable surgery and a waste of time, money and patience. This disease is the shits. And that’s just one of many struggles. I feel for you. P.Ts really are not keyed in. I’m also on Tysabri. I’ve been sick since recovering three different bouts of mono in my teens. Had the bed curling flares in my mid 20’s and disabled by 33. Still…..doctors after doctors could give no answers: they weren’t listening. I gave them the clues I would have never understood as a correlation. Finally diagnosed at age 52, 2.5 years ago and only now with skips and starts have been able to link 3 consistent 28 day Tysabri infusions together and a bit of sunshine has been let into the darkness of my illness. If not for my lovely wife would I even be here writing to you.

@SaraslivingwithMS Жыл бұрын

Wow how frustrating!!!

@clementhacunda5927 Жыл бұрын

Hi Sara. I have foot drop also because of a deform foot that i was born with. What has helped me the most was a plastic brace that washed fitted to my foot and a pair of diebedic shoes wear the insert was molded exactly to my feet and the shoes are made for better balance. You need to go to an orthotic special place to get measured for the right shoes Have much success

@SaraslivingwithMS Жыл бұрын

Thank you so much for watching and commenting. I am going to start back at physical therapy. I had seizures that led to an ICU visit that made my right leg decline more than it’s “normal” So hoping the therapist can help with that and also recommend a good orthotic specialist because that first one I went to was awful.

@dianefresca6896 Жыл бұрын

Just found your channel. I had rt.leg issues just like yours started in 2017 after a serious fall from walking I didn't have insurance so yr.after yr.I got worse rt.hip and foot drop. 3 yrs later I turned 65. I was not diagnosed til 2022 at age 67. Haven't walked without assistive devices. I hope taking ampura will help. Only been on this chemical about 1mos. .

@SaraslivingwithMS Жыл бұрын

I hope it helps you. Please be careful if you see my video on my seizure, it might of been the cause.

@dianefresca6896 Жыл бұрын

I know about the seizures. Its always in the back of my mind

@judyrice4531 Жыл бұрын

Thanks for you informative videos! I am currently using Bioness L 300 Go on my calf. I have had it about 5 years and called about replacing the battery, but, wow, found out the was $2000.00! I was not expecting that! My question to you: what kind of ankle brace do you use and where did you purchase it? Thanks in advance, Judy

@SaraslivingwithMS Жыл бұрын

I have a bioness too. My insurance covered it, have you tried that?

@judyrice4531 Жыл бұрын

@@SaraslivingwithMS My insurance does not cover this.

@SaraslivingwithMS Жыл бұрын

Oh darn that’s a bummer. I wonder if they have any assistance program. They should if they don’t!!

@scores718 Жыл бұрын

Hi Sara. Years ago I was fitted for custom afo. Threw it in bottom of closet. It has not seen light of day since (over 20 years) More later. Hard to type.-ellen

@SaraslivingwithMS Жыл бұрын

Why? Was it making it worse? Do you use a cane or anything else?

@hfaith81 Жыл бұрын

Have you tried the Wahl’s protocol or Best Bet diet?

@SaraslivingwithMS Жыл бұрын

What is the best bet diet? Has it helped you?

@cynthialewis2096 Жыл бұрын

Hi Sara, I have also tried everything, with nothing working very well... so frustrating!

@SaraslivingwithMS Жыл бұрын

Have you tried physical therapy?

@cynthialewis2096 Жыл бұрын

@Sara’s Living With MS ha! I have been to about 75 pt appointments. It has been completely useless, and just drains what energy i have. Thanks for your response.. i really appreciate it

@attylee Жыл бұрын

Sara, thank you for what you. I have a question maybe you can answer. I use a WalkAide by Hangar. It appears similar to what you use. A few months searching the Internet, I found another one and was able to speak with the company. That's what I'm desperately trying to now. As I recall from the lady I spoke with, it was invented by a doctor. His daughter had cerebral palsy and he was trying to develop something to help her, and it did. I too have MS, and my left knee is hyperextended, which adds a problem for now, but I have foot drop and a weak hip flexor. As I recall, the device I found fits the entire upper leg to just below the knee. My walkaide has two electrodes at side knee area. The one I saw had at least one more, somewhere in the area, to assist with the hip. I'm going to keep searching but if you can come up with the name, I'd greatly appreciate it. And if I find it, I'll be sure to let you know. My thanks, Lee

@SaraslivingwithMS Жыл бұрын

I have seen that device on someone at the store once and I should of asked about it, but I didn’t want to be rude. I have not been able to find that either and the first estim device I tried wrapped around your ankle and fit inside your shoe and I can’t find the name of that one either., but don’t think that is it. The bioness does have an upper thigh device as well but I do not think it’s the one you are describing. Searching the web has not been helpful

@attylee Жыл бұрын

Found it. Neuro Sleeve

@SaraslivingwithMS Жыл бұрын

@@attylee I’m think the device I saw in the store was different from that. Are you thinking of getting it?

@morganmadison366 Жыл бұрын

Have you ever tried a lectin free diet such as that recommended by Dr. Gundry, "The Plant Paradox?"

@SaraslivingwithMS Жыл бұрын

No I haven’t tried that one

@matttorrence2900 Жыл бұрын

Sara seems like a nice lady. I wish I had a wife just like her.

@naturallydope6971 Жыл бұрын

New subby

@scottstacydenis Жыл бұрын

You have informative video's, especially for those people who have been recently diagnosed with Multiple Sclerosis. I was diagnosed with Multiple Sclerosis in August 2015 and started on Copaxone and now on Ocrevus. I also take Gabapentin 100 mg twice a day for spasticity and nerve pain. During your research please checkout Aaron Boster on KZfaq an experienced Neurologist out of Ohio and the University of Michigan has an excellent Neurology Department. Take care, Stacy. Fire your Neurologist and find a new one as soon as possible if you are not satisfied with him or her. Great Doctors are hard to find but very important. I also tried that K drug, Ampyra but it did not work for me.

@SaraslivingwithMS Жыл бұрын

What do you think of the gabapentin? I have not heard of that.