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Angie679

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Hi I was wondering if anyone could comment on whether or not muscle pain (specifically calf achiness) could be associated with a muscle neuron disease like ALS. I have posted in the past and have experienced body wide muscle twitching for about 10 months or so. I have not had any weakness that I am aware of, however, for about the same amount of time I have had one leg (muscles in calf area) feel achey, almost like a pulled calf muscle. I can press on the muscle that is tender and identify where it is bothersome. I do walk quite regularly (3 miles/day) and I am able to do so without alot of trouble, but I do notice that I favor this leg and therefore limp throughout the day. I can walk on toes/heels without trouble and am on my feet all day. Along with the twitching which occurs randomly in various body parts, I don't seem to have any other limitations. So long and short, is muscle pain usually seen along with the other trademark ALS symptoms? Wright, and anybody else, I would truly appreciate any input. Thanks again.
Angie
 

wright

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Hello Angie

If a little muscle pain in your calf, along with some fasics are your only symptoms . . . I wouldn't be too worried you have ALS. Actually, I wouldn't be worried at all.

From what I recall, you were scheduled to get an EMG and then cancelled. Just go get it done . . . and get it done on multiple limbs so you can finally relax. Otherwise, you are going to be asking question after question and not get any definitive answers from any of it, because you won't go see a neuro.
 

Angie679

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Hi Wright;

Again, thank you for your reply; I will take you up on your advice and have the EMG testing done. I really need to get out of this rut I am in and this self-destructive mind set. I am embarrassed by it and ashamed that I have let this worry and anxiety take over my life. I am a mother of two young kids and had decided to go back to school (Radiology Tech) but I have wasted so much time consumed in this misery. You are very knowledgeable and comforting and all the people who post with their worries and questions benefit from your wise and kind advice. Thanks again! I'll keep you posted.

Angie
 

patricia1

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I remember when I was watching my grandchildren and held the baby The next day my arms felt like I was lifting heavy weights instead of 12 pound baby .So the anwser is yes it cn be a sign of MND Pat1
 

Sammantha

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muscle pain

HI Patricia, i get upset when websites say ALS does not cause pain. My son wanted me to go on a field trip with him and i had put it off so i went on the last one. It was a walking field trip, no biggie... We walked three miles all together and my back tightened up and ached. The next day i could barely move, i felt like i weighed five hundred pounds, i was not sleepy i just did not have the energy it took to move around! I weigh 125. Anyways, i have muscle pain all the time, especially if i am physical throughout the day.... I just ache so bad, but the worst spot is my ribs.... I knew it hit my ribs when one day i could literally feel the pain of every rib in my body, i thought it was bone pain. Now i get rib pain when i use my arms too much. It is crazy rib and and back pain from the use of the arms...
 

wright

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Just a note

Whenever you read about ALS not causing pain, they're not talking about muscle or joint pain. Muscle pain can certainly be caused by ALS from cramping and spasms; there is also joint pain from contracture. Many people don't have these symptoms while developing ALS, which is why it is considered an insidious disease: you have no idea it's robbing you of your muscles and strength, because if you're not cramping or having spasms, you will have no idea it's happening.

The type of pain that is not associated with ALS is neuropathic pain, which would be caused by denervating or demyelating sensory nerves. That is the pain they are referring to when they say there is not pain with ALS. So if you have neuropathic pain . . . good for you . . . you most likely don't have ALS. Again, ALS only affects motor nerves . . . not sensory nerves (which is why the sensory portion of the NCS is typically clean with ALS). Denervated motor nerves do not cause neuropathic pain.

Therefore, when someone says they have ALS and suffer from pain, that pain is most likely from muscle cramps, spasms, contracture, etc. I'm certainly not saying that if someone suffers from muscle cramps or muscle spasms, etc. that they have ALS. I simply wanted to clear-up a common misconception about pain and ALS.
 

Sammantha

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wright

Hi Wright, i have muscle wasting around my knee area.... My tendons stick out and my left side has spasticity so i cannot straighten my left leg. You can literally feel the tendon in the back and side of my knees like hard rubber bands. Do you experience this?
 

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Hello Sammantha

The only thing that has happened to me is atrophy in a few muscles of my back, shoulder and arm . . . all on the right side. The atrophy happened quickly and then just stopped. I have had no changes in nearly three months. If you didn't know me, you wouldn't know the right side of my body is atrophied, even though I lost about an inch off of my upper arm and forearm and a decent amount of muscle elsewhere. I was an avid weight lifter for nearly 20 years, so my body still looks "normal" despite the loss of muscle (it just doesn't look normal to me). I have lost strength too but I'm not even close to being clinically weak, but I definitely am weaker than I used to be. My reflexes are all normal and I don't have any spasticity.
You have to remember that there are so many things that can cause weakness and atrophy. I know you are worried and I can fully understand, but from what I can remember of your symptoms, I don't think you have ALS. Hang in there.
 

awakinggiant

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Hello Wright

Can you have neuropathic pain as well as pain from muscle spasms. Muscle spasms started in my ribs last year with a affected FVC. A year latter it sstarted with lower back tightness then neck tightness that gave me the worst heada ache for about two months. Half way throught that the muscles began to jerk and began fasciculations. Atrophy and weakness are a factor and now i notice trembling. High spinal tap protein throws me off with this burning in random parts of my body..EMG shows mild left neuropothy and non focal increased activity in right leg. Could be early neauropathic process or increased ecvitability it says. Any ideas? Thanks, Kris
 

awakinggiant

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PostScript: I also have some throat itchyness going on with some confusion...makes me remember to a couple of years ago where I expierienced the same thing, including the cramp-like head aches...
 

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Hello Kris

You say you have burning pain in random parts of your body: could you share where that burning pain is and how it manifests? Is it continuous? Is it intense burning? Does it get worse when you flex the muscles in that area?

Your EMG results: Which muscles were shown to have a possible neuropathy? Which muscles were shown to have increased insertional activity? Did they find positive sharp waves and fibrillations and/or fasics?

What is your diagnosis?
 

awakinggiant

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Well, the neuro that did the EMG didn't give me a diagnosed but the neuromuscular dr said she thought it was benign fasciculation and cramping desease, I guess based upon the strenght I showed. Unfortunately, it may have passed her test but it's alot less strength then I should have. Of course, I was laid up for two months with neck cramping and bad headaches (which seemed to be on random head muscles that moved around, hince only ice would help...photophonia/photia were issues). It seemed to come in spells of pain then seemed to derive from cramping muscles, wether ribs or thighs, just painful. I remember pins and neeedles in back of head preceding attacks often thought pins/needles sensations were observed on and off for 3 years. Noticed wild mood swings for three years but remember sphyncter issues as well. Those have since been less of a problem but I wake up with head pain in the temple area which seems to be on and off throughout day. This also creates a face pain below right eye. The fatigue has been rediculous though is gettin better now, somewhat. Sometimes I wonder if I'm getting enough air at night. FVC showed mild asthma last Aug. Maybe in head but woke up short of breath. Diaphragm even fasciculating right where ribcage V's in middle, have felt pain there though been diagnosed with hiatal hernia.
As for the burning pain, it almost feels like someone is touching my skin with a hot pot of water and can be located on any of the extremities feeling like its on skin surface, not unlike the burning pain under eye. When I pinch it or whatever it is unaffected though when I shower or it seems to make it subside. It last for 5-20 min, moves around, and seems to be unaffected by movement. The cramping pain in ribs is on and off though bad at times and soar to touch. I've noticed slight voice changes comes and goes and can feel like one point back there is uncomfortable/painful, hoping it's acid reflux. Hands/arms shaking, single muscle jerk or "pop", and random fasciculations are all consitent problems that seem to come and go in intesity.
EMG says : The right peroneal and posterior tibial motor, F-wave and sural responses are normal. The left peroneal motor CV is normal. The left sural distal latency is prolonged but CV is normal. Both median and lateral plantar SNAP's are normal. The righ median motor, Fiwave and median ulnar sensory NC studies are normal. Needle exam of the right upper and lower extremities, cervical and paraspinal muscles show minimla increased insertional activity as noted below.
1> Mild left sural neuropathy
2 Nonfocal increased insertional activity in the right leg. This maybe seconday to mild or early neuropathic process or increased nerve excitability. Progress study recommended.

Sorry so long, but A) I dont know what the heck that means so i put it all (all i know is they want me back all the way in houston to do another spinal tap they cant get done here!) B) I didnt want to miss anything.

I don't remember if I posted high spinal tap protein (105 once and 87 once) and 3 nonspecific lesions on brain mri but no oligoclonal bands. Servical mri shows mild degenerative change w posterior disk bulge at c5/c6 w/out significant central canal or neuroforaminal stenosis.
Head is hurting like a a beast. Thanks for any and all help.

W/Love, Kris
 
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awakinggiant

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burning pain in ALS?

you were asking about the burning pain in my muscles and gave u a pretty long answer and never heard back. Since ur opinion is valued and the burning is still there I wanted to try my answer again tho shorter. The burning pain can be in neck, calf, thigh, arm, anywhere really including face....especially face. It doesnt seem to be affected by flexing and is random in timing as well as location. Of course there is other pains and crampingand even voice hoarseness but wanted to try and get your insight to the burning pain. Any help is appreciatted.
thanks kindly
kris
 

wright

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Your global burning pain is due to what your docs told you that you more than likely have: a neuropathy; you quoted it from your report.

I also read your initial post: you definitely have something happening to you, but ALS is probably not it.

Keep going to your docs and I'm sure in time they will determine what you have.

Take care.
 
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