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JBSRI

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Thanks for taking the time to consider my questions:

I am a 42 m who in 2003 had weakness in legs and arms. I also had fasciculations on different parts of my body, including tongue. I freaked out and went to academic med center who admitted me for tests to initially see if I had MS. I had MRI w scan, nerve conduction study and total bloodwork. Got a clean bill of health.
Feeling and anxiety continued, and I insisted on seeing academic ALS specialist for eval. He worked me up and did EMG (extremely painful) of hands feet arms and legs and found nothing. He told me to go home and live my life.

In 2007, I had injured myself during workout broke L4/l5 disk into spinal area and had total pain in both legs and drop foot in left foot. Neuro did surgery after rehab failed and took out disk. Strengh came back and I continued on.

During surgery, discovered I have Hashimot's subclin hypothyroid and I was given Synthroid to take 1 time per day.

Fast foward to this past June, where I started getting cramps in my calf and insert of right foot, along with fasciculations. Cramps have gotten so bad in right leg that it is hard to walk wout feeling incredible cramp pullaway pain on that side.

To complicate matters, I am getting cramps in fingers and hands on both sides--although more right than left, and the left foot and calf are also bugging me. You can see the fasciculations in my inside right foot by arch and up and down the calf. Now you can see them in my cramped right hand. My fingers ache at night and wake me up, as do the calf cramps.

I also get these giddy feeling spasms in my stomach at night, as though spasms are occrring there as well. Very odd.

All of this in less than 2 months. From nowhere. However, NO muscle weakness that I perceive whatsoever. I can do heel toe walks all day long and constantly test the muscles. However, when I am done, I often cramp up for a moment until it passes.

I had bloodwork done from here to there, electrolytes, magnesium, calcium, cbc liver thyroid muscle enzyme mono Sed rate. ALL CLEAN. Which adds to my frustration.

Questions for the experts:

1. Does what I discribe present as ALS in your collective opinion?

2. While I complained of similar issues in 2003--weakness then, no weakness now--and had the ALS workup, what are the chances of it not showing then and it NOW showing?

3. I think that the fasciculations I see might be from my surgery and perhaps I've injured the L4L5 again, but how does this explain my sudden and painful hand cramps and spasms. Fingers in middle of right hand hurt at base.

4. Should I go back to ALS specialist and show him new symptoms and ask for another EMG? What are the odds after 4 years? I don't want to cycle down on this, but I am not functioning and want to approach this logically.

Thanks.

JB
 

JBSRI

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Correction as to drop foot. It was in the right foot. Same foot where cramps and faciculations bother me most. Thanks.
 

awieleba

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JB

I would go back and get a nuero eval, why not? You can have back check again..

It is not normal for als to come and go over a 4 yr period. It usually stays and progresses or progreses then sits still and then progresses more. I think this could be your back problems and thyroid. It can take upwards a year to get thyroid under control.

My hands dont cramp but have that ache in them alot when I use or in the morning. I have to squeeze them to feel better.

Go back to docs!

april
 

JBSRI

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The right calf is cramping so badly that when I stop walking, it seizes me and is incredibly painful. Does that sound ALS like early stages?
 

tmasters

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Cramping in my calf muscles was exactly how it started for me, and unusual DOMS after running or just normal activity.

But cramps can be caused by soooooo many other things that you shouldn't let that worry you. If you're concerned, go see a neuro. He can do a more targeted blood test to measure CK levels and for toxins, etc.

Good luck,
Tom
 

tmasters

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Doms

Delayed-Onset-Muscle-Soreness

It's the muscle soreness that follows when you overexercise a muscle, especially those that you haven't used in a while.

So I was running, but I would run the same amount each time and yet I was getting DOMS. That was the strange part.

BTW: I haven't heard anyone else with ALS complaining about this, so maybe it was just me or it was due to something totally unrelated to ALS. Everyone presents differently.

-Tom
 

CindyM

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No, you are not alone, Tom. Currently one of my biggest challenges is to learn when to quit - before I cause too much DOM and before I will need to sleep for the next three days. I just never knew they had a name for it, is all.
 

Zaphoon

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I got my first big dose of DOM this week after mowing. My shoulder muscles are so weak, they're a complete wreck. My wife has been very good to mow these past several weeks but there is a culvert by the road she can't mow. Its a big ditch about 10 feet in expanse, over 5 feet in depth and 14 feet in length. Weeds and grass just grew too much to my liking so I did what I always do when I mow the yard, I mowed the ditch, too. Wowsers! Man oh man! My shoulder muscles have been screaming at me since Tuesday (mowed on Monday). I don't think I'm mowing the ditch anymore. You just have to learn when to quit, I guess.:)
 

CindyM

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Mowing can be dangerous! Ask Al! :-D
 

olly

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yes,doms are definatly a symptom.
back when i was more mobile at the start of my illness doms were a regular occurence.
a couple of hours gardening would leave me immobile and bedridden for a few days.
now as i dont do that much its not so much of a problem.
but i am currently going through pt at home twice a week ,just light stretching/strengthning exercises to keep me walking as long as possible and some for my balance which is really bad.
since starting this the doms have returned,did pt yesterday and woke up this morning stiffer than i have been for a long time and more soreness/fatigue.
take good care.
caroline:-D
 

JBSRI

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Went to neuro today and he did exam. Said I passed w flying colors and although he saw a couple of fasciculations, did not order an EMG. Said its stress and nothing more. Said I do not have hallmark signals of ALS and to go on w my life. He pulled out his record of my visit 4 years ago and said I complained about cramps then and the EMG found nothing.

Said I should focus on what is stressing me out so much. Not to concern myself with ALS.

Hope he's right.

Much thanks for the help from others on the board. It is greatly appreciated.
 

awieleba

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JBSRI,

my sister has been having really bad cramps all over her body for 6 months. Anytime she moves a certain way or stretches. She has not weakness and any sort of MND is not even on the radar. The fact that this has been going on for 4 yrs with no weakness is great!

I wish you the best!

april

**ps. I thought DOMS was champagne! I love champagne on my girls night out!
 
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