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Old 06-26-2017, 09:38 AM
RonRuns RonRuns is offline
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Default Tired leg sensation feels different?

One great thing about MS is that you never get bored! :-) There is always something new that comes up and lots of questions to try to make sense of.

One thing I noticed is that sometimes, after training, what would be the usual tired feeling in the legs (the feeling before MS) is a different feeling that's hard to explain : closer to numbness than the tired legs I'm accustomed. My vocabulary has never been well developed to describe feelings or sensations. Is anyone experiencing the same?

Overall, I get all kinds of sensations and experiences I have a hard time explaining and when I visit my neuro to list what's new I usually either skip or fumble because of a lack of words.

Some feelings are easy: tingling, burning sensations, etc. Some are very hard for me, all the cognitive stuff and feelings I have never felt before, so much that I start doubting they're there even more so when nothing seems to show up in the neuro exam.

So, the name of the game: name that sensation.
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Old 06-26-2017, 10:35 AM
Suebee Suebee is offline
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Ron, I used to run but not long distance as you. I preferred an under 5K run. Just enough to clear the mind and feel air in lungs etc. So I am envious of you (in a good way). And you inspire me to keep trying to get my body to a point where I could run a bit. I did a three mile run about 2 years ago in a state forest. I still think about it, it was so good.

Rubbery? Is that the feeling? Kind of numb and not feeling the muscle strength but the legs can keep moving, maybe not as good form or a little sloppy?

Another feeling I get is like I took the weight of a wet washcloth and wrapped it tightly around each large muscle. On bad days, it is like walking underwater. I'm moving my muscles but its against more weight than air....

I wouldn't worry about the description to neuro. I think they are used to it. When I was first diagnosed, I worked really hard to describe the sensations I felt, thinking it would help with neuro understanding. In the hospital, I kept telling drs on rounds that it felt like someone had put a backpack of rocks on my back and I finally got pissed off about their lack of comment. A doctor took notice and just said to me, "That's normal".

His comment actually gave me peace of mind.
All the crazy sensations MS give you that feel so abnormal, are actually "typical" or "normal" for people with demyelnated lesions in their spine or brain.

That said, Ron, google "runners with MS" and read a few articles on runners who overcome this. There is a high school girl who ices down before a run and middle aged runners who use orthotics and finish ironman. Yah, that's good. (Hell, I can do my 15 min. workout today.)

Good luck Ron! Keep your good work up!
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Old 06-30-2017, 03:47 PM
RonRuns RonRuns is offline
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Hi Suebee,

Thanks for the answer. I often wonder whether I should see another neurologist. I like him for a lot of things and I think he likes me as a patient. But often when I mention new symptoms I'm feeling, he's kind of incredulous when it doesn't show up on the neuro exam: the usual exam for sensitivity, strength, reflexes, etc.

The only thing always shows up is my eyes sometimes not staying in sync when going right to left which explains some of the blurry vision.

Once he observed weakness in the left arm and new lesions in the spinal MRI and only then, I noticed, he seemed to believe me!

He never says he doesn't believe me, but you can see it in his eyes.

I know that a lot of you have it much worse. But when things that were always working great start to function weirdly it gets scary even if I'm still able to walk normally most of the time and do things normally although not optimally or when I get weird sensations.

Keep up the regular runs: I swear they do wonders.
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Old 07-09-2017, 11:00 PM
Blueeyedreamer Blueeyedreamer is offline
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I, too, am a runner. My preferred distance is half marathon but am training for the Toronto full in October. I did the Philly full last November.

I totally understand your frustration with being able to describe the sensory sensations. My dr had suggested reading a lot of personal stories to see how others describe their symptoms. As you can tell, it is tough!

I've described the heaviness as if someone put something heavy in my blood or like I'm wearing weights. The weird sensations are much more difficult.

If I have numbness, it feels like I'm wearing a wetsuit. Like my skin is thick rubber and I can't feel strongly, only pressure. I sometimes feel like my leg is covered in hot plastic wrap. Another symptom I have to describe is to say my leg has anxiety. Have you ever had an anxiety attack? I get a similar sensation but it's in my leg and not my chest.

These are not necessarily triggered by exercise. I mostly get the heaviness and prickles after.
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Old 07-09-2017, 11:01 PM
Blueeyedreamer Blueeyedreamer is offline
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Also, I have a new cervical lesion. I can definitely tell I've had progression because running is much more difficult.
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  #6  
Old 07-14-2017, 06:44 PM
hscott72 hscott72 is offline
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Default I so relate to these comments

I relate to having new weirdnesses and not knowing how to describe them. Also not being confident my neurologist believes me since I have no new lesions and them not showing up on exam.

I've got new muscle cramps in one hip too. It has taken me weeks to decide its not an injury. How can i expect my doctor to believe me when I doubt myself so much?

I'm so glad all of you also believe in pushing on despite it all. No-one around me understands and I'm the only one with MS I know that has fully committed to making exercise happen every single day despite how hard some days are. You folks make me feel like I'm not totally insane to take it as seriously as I do.
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  #7  
Old 07-15-2017, 04:07 PM
RonRuns RonRuns is offline
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Thanks for your reply hscott. It's very good to hear that we are not alone. I'm afraid to tell my doctor I'm running, or how much I'm running. Last summer, he told me he was training for his first 10k. I'm afraid that if I tell him that 10k is a short training run for me, he might doubt me even more.

One thing I have noted is that if I take just one week off, symptoms often creep back.

This week is a forced rest week after a trail marathon last week-end. Already, yesterday I've started to feel numbness and buzzing in my legs. Can't wait to start running again. I might go for a swim tonight to get cortisol and other anti-inflamatory horomones to flow again
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