Question for those who walk poorly or can no longer walk:

[mjan]

Just curious if you had symptoms that affected your ability to walk suddenly or gradually.
If you don't mind, could you share how exactly your walking was affected by MS.

thanks, Jan

[Waydwnsouth1]

I'm having a great deal of difficulty walking which just came on suddenly. I walk now with an overly exaggerated limp in both legs. It's really hard to describe. By the time the evening gets here I'm lucky to walk across the room.

I go to see my new VA Neuro next Wednesday. My DW keeps asking what are they going to do about it. There's probably nothing they can do about but perhaps I can get some sort of assistive device other than the rollator I'm currently using.

If I walk my dog to far from home I'm in trouble because I can't walk back. So I have learned my limits.

So MS has struck again!

[Marco]

Just curious if you had symptoms that affected your ability to walk suddenly or gradually.
If you don't mind, could you share how exactly your walking was affected by MS.

thanks, Jan

I gradually moved from hobbling around to using a cane, two canes, rollator and eventually a wheelchair. My hips were so tight (spasticity) that my legs did not work properly. I would essentially lift my leg and rotate my hip and throw my leg forward. My feet would slap the ground further throwing off my gait. Balance problems and falling (7 falls in 18 months) had the doctors asking me to get a wheelchair.

I was initially against using mobility aids, but now I gladly will use them because I can travel further with less risk. My manual wheelchair really changed my life because it helped extend where I could travel. This allowed me to participate in more activities and spend more time with my wife.Although I was given a power chair the manual wheelchair was much more my speed. The manual wheelchair was much easier to transport and it allowed me to exercise my upper body. The final insult was a huge flare where I lost the right side and lower half of my body.

While some neurologists are capable of correctly identifying and treating walking issues, many are not. If you are having gait problems or walking difficulties please consider seeing a physical therapist, physiatrist, or similarly trained professional in walking disturbances. The problem may not or may not be neurological so that could require seeing multiple specialists. The key is to not accept "no" for an answer and continue to push for answers. Ambulation is an ENORMOUS aspect to a high quality of life and don't let anyone minimize the symptoms.

Last summer, I visited a physical medicine & rehab doctor (physiatrist) and he correctly diagnosed my problem as being widespread and severe spasticity. After getting a baclofen (ITB) pump that controlled my spasticity much of my walking improved. I will occasionally still use a walking aide or wheelchair to conserve energy, but that is the exception and not the rule.

Ampyra could also be an option to help improve your ambulation. The drug is also known as 4AP (especially in Europe) and is known as the "walking pill." Ampyra can help with nerve conduction associated with demyelination. Again, properly diagnosing your symptoms will help determine if you are a good candidate for Ampyra. They currently have a 60-day trial offer so you can see if it provides benefits. They also may have an Ampyra drug seminar in your area to learn more about the medication.

Physical exercise is important for MS patients as even recent studies have proven. If nothing else, consider hiring a physical therapist that can help you design a physical fitness program that targets your ambulation. My PT lady helped me with not only strengthening exercises, but also balance exercises to help reduce falling. You absolutely need to maintain your muscle mass to help you ambulate and not let atrophy set in. Even if the problem is within your neural pathways physical therapy can help you improve or retrain neural pathways (limited).


I hope the information helps.

[Karenkay]

I was diagnosed in 1989, age 29. After initial attack and diagnosis, I was pretty much symptom free for many years. Another major attack in 2001 that affected my eyes. Again, mostly symptom free until 2011 when I started to limp and my leg hurt. Alot. Then a cane, a scooter for distance and now using a walker full time.

[KoKo]

Hi mjan

Not sure if you want to hear about walking from persons with RRMS only? (or anybody?)

Hopefully you don't mind.

One of my very first, initial MS symptoms was a slight limp/leg drag, which wouldn't happen all the time at first. There was no pain, just a gait that would be "off" at times.

Over the course of about a year or so, the limp/drag happened more frequently until it became constant, and worse when tired or from higher temperatures.

At the same time, tripping/falling started happening due to foot drop (on the leg that was limping). Got an AFO brace to help with the foot drop. That really helped a lot.

After about 4/5 years of gradual progression, I needed a cane to help with my walking due to leg weakness and balance issues. The cane really helped for awhile.

Maybe a year or so later, I needed a rollator. The cane wasn't enough to support my walking for very long or far (and I was falling too often). The rollator really, really helped me to continue walking. What a great invention.

I still use the rollator, but now am able to walk only very short distances because my legs just decide to stop, and stubbornly won't move until I rest awhile.

Is your walking doing ok? Hopefully it is.

Take Care

[headrift]

My walking difficulties came on slow, but picked up problems over time. I can't walk very far even with a walker right now. Yes, Ampyra helps some.

First problem came on in '04 or '05 sometime when I had trouble walking back up to where I was staying from a convenience store, down and up a hill for about a mile or two. I had to sit down on the way back up for a few minutes before I could get back up and finish the walk.

Spent close to a decade with my walking endurance in a slow decline. Less distance decreasing for every hike. The neuro had said that the MS tests were "inconclusive", so I just dealt with that for a while.

When my optic neuritis fired back up, I went back in. More tests, but conclusive for MS this time. Now I walk as little as needed, with a cane or walker if the distance is going to be more then a few feet. This stage has been more pronounced for a couple of years. Like I said, Ampyra helps a little.

I hope the information here helps illustrate how my ability to walk went.

[REG53]

Hi Jan, At first I couldn't walk without my legs feeling tired and I couldn't walk very far without resting. That went on for quite awhile and then my left leg started dragging off and on until my left foot started dragging all the time. Now I have tired legs, limp, foot drop and my left leg drags all the time. I use a cane, rollator for short distance and a scooter for long distance.

[mjan]

Thank you for your responses.

Another question: do you or did you have spasticity in your legs?

The reason I ask is because I have had a lot of muscle fatigue and general fatigue that has kept me in bed as much as I can afford to be. Both my legs AND my arms were heavy, achy and just plan tired.
When I went to try my walks, my legs were just too heavy and tired. I think its more muscle fatigue than losing my ability to walk. I DO NOT have foot drop and never did. I have had muscle spasticity for years.

Also having more spasms, charley horse type in calves which are always tight, then my feet/ankles lock up, then my toes go nuts! I think it was the STATIN Ive been taking so my doctor and I were eliminating it. It improved some, but still getting these contacted muscles along with the spasms too.

I have a mild case of MS, though it cost me my career due to Cognitive issues, memory, hearing, seeing and saying the wrong words, typing the wrong words and literally blanking out! thought they were seizures but that was eventually ruled out.

I do not get relapses per se. I just deal with all my disorders and trust me they intertwine so some times it is hard to know which is which.

Now I notice this change with my legs/walking being heavy and tired. Hope this improves. Seems to be improving now after the last 3 weeks.

Any ideas?
I love you guys~and pray for all you are enduring!

Hugs, Jan

[SNOOPY]

Hi mjan,

How long have you been on a Statin and how long ago did you stop?

The Statin, depending on the time frame you were on it, could be the cause of the cognitive and memory issues as well as your current leg and arm problems.

[KoKo]

Another question: do you or did you have spasticity in your legs?

Jan

Yes, I do have spasticity in my legs. For the most part it is mild and manageable.

It's only bothersome for me when it becomes severe (affects my ability to move) from these conditions: when I have an infection (bladder, cold virus, flu, etc) or fever, when it's humid and there's a high dew point outside, when I'm extremely cold or warm, if I have pain, or when I'm in fatigue mode and can't move around much (not moving also causes my muscle stiffness).

The reason I ask is because I have had a lot of muscle fatigue and general fatigue that has kept me in bed as much as I can afford to be. Both my legs AND my arms were heavy, achy and just plan tired.
When I went to try my walks, my legs were just too heavy and tired. I think its more muscle fatigue than losing my ability to walk. I DO NOT have foot drop and never did. I have had muscle spasticity for years.

Also having more spasms, charley horse type in calves which are always tight, then my feet/ankles lock up, then my toes go nuts! I think it was the STATIN Ive been taking so my doctor and I were eliminating it. It improved some, but still getting these contacted muscles along with the spasms too.

I wonder if after your fatigue eases up and you're able to move around more (with some mild stretching), maybe your spasticity will subside? Let's hope so.

Take care

[mjan]

Hi mjan,

How long have you been on a Statin and how long ago did you stop?

The Statin, depending on the time frame you were on it, could be the cause of the cognitive and memory issues as well as your current leg and arm problems.

No, all my cognitive issues started years ago. I just started this statin a few months ago.
I had heard that it can cause spasms. Good to hear from you Snoopy. Hope you are well.

[Echo2099]

Mjan

Sorry to hear you are having these issues! I can understand how frustrating and painful they can be!

Muscle fatigue and spasticity in my legs are my worst symptoms. And boy, they are HEAVY! The heaviness causes a lot of muscle fatigue, mostly in my left. Between those symptoms and foot drop, my ability to walk is seriously compromised.

I get botox shots by the physiotherapist for the spasticity, because me and baclofen do not get along well. The botox helps my leg muscles relax, but my left ankle is always very tight. And like you, my toes really go nuts and curl under a lot.

Doc and I are working on finding the right muscles and dosage to get my ankle to cooperate more. But in the meantime, stretching helps the most. As long as I stretch my calves and ankles numerous times a day, I can get the tightness to ease up some.

I sure hope you find an answer that works for you!

Echo

[Marco]

Another question: do you or did you have spasticity in your legs?

I had crippling and widespread spasticity that put me in a wheelchair. My legs were so tight that I was unable to access what strength I had. The spasticity also impacted my balance and coordination leading to frequent falling and crushing fatigue. I eventually got an ITB (Baclofen) pump that resolved nearly 100% of my spasticity issues. Once the spasticity was gone my life was instantly improved; legs stronger, no falls, almost always parked wheelchair, even clearer thinking.

What many neurologists had diagnosed as severe and rampant MS was largely out of control spasticity. My QoL has been greatly improved since I got my pump. Right now, I have extra stressors in my life and I can feel an increase in leg spasticity. My legs are tight, they feel heavy, I am having troubles walking, balance issues have returned. I'm going to get my pump medication increased and fully expect all of those issues to be resolved within 24 hours of again reaching the optimum dose.

I hope you find the answer to your hardships and wish you well!

[SNOOPY]

No, all my cognitive issues started years ago. I just started this statin a few months ago.
I had heard that it can cause spasms. Good to hear from you Snoopy. Hope you are well.

Glad to see you back on the forums

If the difficulties you are having with your legs and walking started after taking the statin then my guess would be that the statin is the cause and not the MS. The longer you are off the statin the better (I hope) you should feel.

I was on a statin for a year and a half. In that time I lost my quality of life. I rarely drove due to cognitive problems (getting lost in familiar places, cognitive problems, lack of focus/concentration, memory loss, forgetting words and forgetting what I was going to say). This was getting so bad that the only thing I could do was cry. My husband was worried I was developing Alzheimer's.

Physically my legs were getting weaker and I was losing my ability to walk. I had trouble accomplishing anything that required the use of my legs. I thought my MS was progressing at an alarming rate.

When I stopped the statin I found the cognitive deficits were improving. The issues with mobility were frustrating and more difficult to regain. For me this was much like the exacerbations I have had. I had to work to get my strength and endurance back.

My personal opinion: Statins are dangerous for many people and extreme caution should be used by both the prescribing Dr. and the patient when using.

I hope that with some time off the statins and work on your part that your mobility goes back to "before" the statin.

[SNOOPY]

mjan, I forgot to mention the statin caused horrible fatigue and was very much apart of my inability to do anything.