How did your walking issues start? Trouble with walking

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How did your walking issues start? Trouble with walking

Postby tashs » Thu May 24, 2018 7:43 pm

Hi All,

I have been having issues with walking over the last 6-8 months. The main symptoms started when I walked 6k's or more, then slowly the symptoms became more obvious walking less distance, to now after about 1.5k's it starts. The issue is very heavy weak legs, like they are full of lead, numb feet and I can't seem to control my legs, like my brain and legs are not connected, with steps getting small and tripping on nothing. No obvious foot drag though or leg spasticity. Walking short distances up hills also causes severe muscle weakness in my legs. I have had vibrations, twitching and crawlies on my legs for approx 1.5 years now, although this increases greatly after going for a decent walk.

I have seen videos of those with severe gait issues or foot drop with MS, but I am not at that stage and was wondering how, if you have leg issues, how did it initially present? Was it a sudden onset, or did it happen over a period of time, and what were your symptoms (how would you describe it?). I'm seeing my specialist next month and have another MRI, and have taken a video of it to show him, but always have trouble describing the symptoms. Do you know of any videos online I can watch to compare my walking with?

I work as an Ambo and am desperate to keep my job and mange all of this as long as I can. I love my work so much

Thanks for any advice

Tash
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Re: How did your walking issues start? Trouble with walking

Postby Scott1 » Thu May 24, 2018 8:26 pm

Hi,

I don't think you will find a consistent answer to your question. In my own case foot drop was an issue when I was first diagnosed in the 1990's but it resolved after I had three days of IV steroids. I was slowing before that but wasn't even diagnosed until that occurred. In 2014, I had a severe attack that really knocked me. I stopped two chambers of my heart and lost the ability to walk unaided. However, I have recovered from that. There are two things to watch; causes of inflammation and spasticity.
There are endless arguments about inflammation. For me it manifested as fatigue as well as tightness in my muscles. They are related but can be treated separately.
The first step would be to ensure inflammation is controlled. I do that with an antiviral called valacyclovir and a diet that avoids gluten and added sugar as well as supplements such as CoQ10 , magnesium and aceytl-l-carnitine. You can extend that list but I see them as fundamental.

In terms of how your muscles behave, if possible, still walk as far as you can. I wouldn't add supplements to the list but I would add three things. 1)An exercise program such as Pilates that focuses on eccentric muscle movement 2) a lot of sports massage and 3) dry needling to break up fascia that may have remodeled itself in response to muscle tightness.

Additionally, if you can walk then keep doing it and try to add even a tiny amount each day. That may mean two walks rather than one big one.
Your legs lift because of a muscle in your torso called the psoas. It pulls a chain of muscles up when it contracts so you stop dragging the leg and it feels it doesn't weigh as much. Pilates will help with that if you tell the instructor you want to stretch and strengthen your psoas.

You will also need to stretch and strengthen your iliacus (hip flexor area) and that will need a combination of pilates, massage and dry needling.

If the back of your legs are tight in the hamstring and calf then get a sports massage into those area plus also into the glute med and the periformis. I promise that hurts until they stop. If the legs are stiff then the area in the small of your back called the "QL" will need massage but ask for a either a heat pack or hot stones to be applied first or it really hurts.

If the massuer is good then get a spot of the front of your thigh called the pectinious palpated (a massage technique). It doesn't hurt. The same can be done with a muscle called the sartorius. It's supposed to be redundant but it acts like a belt and restricts the stride.

It does sound like the periformis is tight. If the massuer says it is then you could try a cortisone injection into the lateral part of the periformis. It needs to go into the muscle not be distributed along the membrane over the top.

If you try all this then walk as much as you can as often as you can. The qualification of the masseur is not the issue but good ones know the names of the muscles. A massage might take an hour each time.

If you are experiencing any edema around the ankles then a bit of magnesium can help if it's not out of control.

Regards,
Last edited by Scott1 on Fri May 25, 2018 1:40 am, edited 2 times in total.
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Re: How did your walking issues start? Trouble with walking

Postby jimmylegs » Fri May 25, 2018 1:16 am

hi tash, can relate. for me this kind of loss of coordination is the result of lost nerve conductivity with increased core temp. it's pretty bad for me lately because i've been desk bound for a long time, followed by geting sick and being pretty much housebound for two months. since then i can't do hikes that used to be easy, without several breaks to let my core temp come back down. if i don't it starts to feel pretty risky and i don't want to hurt myself :S rocky trails with a bit of up and down will affect me more than a flatter graveled trail. in the past i've found that working harder and looking after myself better helps get things back in order. i just went for some blood work and several key nutrients were either deficient or not as high as i'd like them to be, so i'm working on that as well as making sure i get out on a trail as often as i can :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: How did your walking issues start? Trouble with walking

Postby Luvsadonut » Fri May 25, 2018 6:04 am

Hi Tash,
I echo what Scott1 states for an approach. My walking (and MS) has been a very gradual decline (18 years) without obvious relapses although the relapses in my case probably happen at a sub-clinical level. Anyway, I previously benefited from Yoga as it stretched hips and core muscles. I currently use an osteopath who guides me to areas which I need to work on. I get help from an Alexander Technique teacher who has taught me to allow my body align correctly. I also use The MS Gym exercises via Facebook, Trevor Wicken is doing a fantastic job on that group, he creates sessions to help all levels of MS movement issues and explains the reason why we struggle with said movements. I do massage throughout the day as guided by Trevor on the FB site, it seems to help a lot. I follow a restricted diet boosted with supplements in an attempt to control inflammation. I also go to the gym to try and keep the blood flowing and get the endorphins firing :smile:
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Re: How did your walking issues start? Trouble with walking

Postby Snoopy » Fri May 25, 2018 9:01 am

Hi Tash.

Did you ever receive a diagnosis of MS or does your diagnosis of MCTD still stand? If your diagnosis is still MCTD you should see your Dr. and discuss this with him.

My journey to a MS diagnosis (3 months) started when I lost the majority of my mobility as well as many other symptoms. My mobility problems hit full force, quickly and took 2 years of hard work on my part along with frustration, anger, and a lot of tears to regain my ability to walk more than just around the house. I have had a few exacerbations that took my mobility with the same process to regain it. My mobility problems are due to spinal cord involvement. In MS, spinal cord lesions are well know for causing mobility problems.
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Re: How did your walking issues start? Trouble with walking

Postby David1949 » Fri May 25, 2018 12:07 pm

Hi Tashs
For the record I have PPMS. My earliest symptoms were very minor, just some numbness in the thumb and fingers of my left hand. Two years later I got the l'hermitte's sign. That lasted about 1 week and thankfully never came back. That's about the time when I was Dxed with MS. That was 22 years ago. Shortly after that I began to feel a little off balance when I was walking. It wasn't really a big problem at that time. It was just a strange feeling. A few years later I started having drop foot in my left foot. One day while we were out walking I tripped and fell flat on my face. That was because of drop foot. Over the years the drop foot went from occasional to constant. And not only was the foot hanging down but it was powering down. Also I gradually got what you might call drop leg. Anything to do with up did not work on the left leg. I couldn't lift the foot up from the ankle or from the knee or the hip. Down still works ok but not up. A few years ago I started having muscle spasms, mostly at night.

These days I use a cane and an orthotic foot brace to walk and I don't walk far. Baclofen helps with the muscle spasms. I don't use any other drug for MS.

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Re: How did your walking issues start? Trouble with walking

Postby jimmylegs » Sat May 26, 2018 5:42 am

update - just spent 3 days in the field which meant low attention to supplements, but a decent amount of activity in semi rough terrain, with some much needed UV exposure. luckily there were enough people to rotate through the most physical tasks (nothing was really onerous). definitely felt it, but am also definitely glad i went :) back to due diligence on nutrition today!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: How did your walking issues start? Trouble with walking

Postby NHE » Sun May 27, 2018 2:45 am

How did your walking issues start?

They started probably 8-10 years ago with my legs feeling heavy like I was dragging them through a foot of standing water.
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