My Legs

[KimT]

I get the weakness and fasciculations. I get that it gets worse after moving more, even if it's in the pool. Why all the tingling and buzzing in both my legs. They feel like they are partially asleep with worms crawling up and down. It moved from just my lower legs to my upper legs and butt.

I remember, even before I was diagnosed, I had a sciatica-like feeling on my left side only not the pain. It would be aggravated by sitting on the toilet.

I guess it's just another weird sensation that I'll have to live with until it goes away or whatever.

I honestly don't get how people travel and do things with their bodies rebelling from them.

 

[KW1234]

I don't get the tingling or buzzing in my legs, but I have some tingling in my facial muscles and definitely have heightened hearing and ringing in my ears. The muscles controlling my eyelids are weakening; when I am very tired, I have to use my fingers to open them. I hear my heart beating and subtle breezes. Loud noises cause me to startle.

I hope the pool is going better for you. I really enjoy my pool time.

 

[swalker]

Kim,

I am really sorry to hear about your legs, as I have been sorry to hear about your back. I am certainly encouraged by some of your recent reports on your sprained ankle, though.

I think all of us are affected differently. The most affected thing on me is breathing and that does not seem to interfere with travel. While I cannot walk long distances, I can still transfer and walk short distances (with caution). I can ride in a car for hours at a time, but not for nearly as many hours as I used to be able to!

It has been necessary to adapt our travel to my limitations. It is a lot of work for my wife and takes a lot out of me. My decision is that the rewards are worth the effort, inconvenience, and costs.

But, there are challenges. It takes me at least a day to recover when we get to our destination. I can no longer get up for sunrise excursions. I can only be active for a few hours in a day. If I overdo it, the next day becomes a rest day.

For me, it is worth it.

I know for others (and probably for you), it is no longer physically possible to travel. I so wish you could. I hope you find a bit of joy and encouragement from the travel stories I share here.

Steve

 

[KimT]

I do, Steve. I love reading about PALS travel stories and adventures. My doctor wants me to get an MRI on my ankle because he's convinced something else is wrong with it. I had it xrayed about a month after the sprain when I was still hopping around on my bad leg. There were no broken bones. He said he believes it is pain and not weakness that is happening on my right ankle. I think it is both.

KW, one of my eyes opens in the morning while the other is shut, then opens. My post sounds like a DIHALS but I've always been hyper aware of my body since I was very competitive and athletic. I went into the diagnosis process well over a year before the average person would simply because I was aware of very subtle changes in my body. I thought it was just a new manifestation of fibromyalgia and resisted my local neuro when he first asked for an EMG. Even after the dirty EMG I waited six months before I went to Mayo.

I think I must have that central pain thing where my body is on red alert for any pain and magnifies it. It's real and they even treat it at Mayo with a three-week program but I don't qualify because of my diagnosis.

Living in Daytona Beach has its limitations. No public transportation on beachside. Medical facilities very limited (you go to Orlando or Jacksonville if you have something seriously wrong) and just a handful of good doctors. On the other hand, it's not crowded like other places in Florida, the beach is wonderful, and I've been here since 1978 so it feels like home.

 

[Firefighter58]

You know folks I sometimes wonder if I really have ALS, I don't suffer from all the symptoms you guys do, I did early on in my fight with this disease but I don't seem to have the problems now. The one that I read above the only one I have is startled by loud noises, I can't speak and I have a bad left leg. I really think the program the ALS clinic has me on has really slowed progression a lot. That's only my opinion but it seem to work well for me.
Al

 

[KimT]

Al,

My symptoms were isolated to fasciculations and foot cramps for at least 6-8 months. If it wasn't for the EMG, I would have been dismissed or given a diagnosis of cramp fasciculation syndrome. I was still running up flights of stairs a year after my diagnosis. Back pain started prior to that but I broke the cycle with Oxy, then I was good for another 4-5 months until I twisted my good ankle off the curb at a grocery story, carrying way too many groceries which blocked my seeing the curb. After that everything changed and I believe that made me progress more quickly.

I still believe ALS is a variable disease and it is most likely a constellation of events that creates the perfect storm. Whether that storm rages through or takes its time might depend on genetics, environment, or even what you do to treat it.

My neurologist thinks I have had it a long time and the first "incident" was when I twisted my left ankle in 2012. It healed up quickly so I never gave it a second thought. Then, in 2013, I was running and tripped on the sidewalk. There was a 4 inch raise in the concrete so I just thought my foot hit it wrong. I got a TBI from that fall and had to go to the ER to make sure I didn't have a brain bleed. After that my metabolism went into overdrive and that lasted two months. I thought it was from taking iodine supplements to correct my thyroid. My thyroid did get corrected with the iodine supplements but I never felt right "upstairs" after that. Early in 2014 I went to a neuro psychologist and was tested. My IQ had dropped over 40 points and I was having trouble with my short-term memory and spacial perception. I worked very hard on that and it eventually got much better. By then I started experiencing cramping in my left foot and fasciculations, mainly while swimming. That's when my neuro strongly suggested I let him do an EMG.

Prior to that I had a herniation in C-5, C-6 and, somehow, it went away after my head trauma. It was a pretty bad herniation and impinged a nerve causing a lot of pain but now it's gone.

Whatever you are doing, keep doing it!

 

[KW1234]

I was lucky in that I had been working with a team on my knee issues about 3 years before diagnosis. My blood work showed a spike in CK in May last year and my PT had been taking periodic strength measurements on my legs and flagged the turning point in June last year. She shared the data with my PCP and neurologist and after MRI's lots more blood work and an EMG it was really clear it was ALS. I was also very active in the gym 3x per week, lifting, cycling and rowing. I am now struggling to do 1000 steps a day on my rollator. The pool has been my escape. As my arms weaken I also struggle to get in my bathing suit. I suspect by summer I will need the help of a caregiver to do this.