hunterross258

Hi Hunter:

I saw your recent Emory post and am glad to hear things have not worsened.

My Cleveland Clinic EMG in June was a painful one. I' worried about the tongue test, but it was the least invasive. A fellowship doctor did the sticking, which may explain why I was so sore afterward (or she was just far more thorough than the previous testers).

Unfortunately, they found more damage in other areas that don't correspond to the MRI findings.

To recap: My first three EMGs in February showed chronic damage in my right arm. Then, the April EMG showed chronic damage in my right leg. This latest June EMG showed more damage to the right leg.

The report says:

"Moderate chronic (not active) motor axon loss is noted in most
right L5>S1 myotome-innervated muscles below the knee, which is
consistent with a remote intraspinal canal lesion affecting L5-S1
nerve/segments, as could occur in compressive radiculopathies
among other etiologies."

Hi Hunter:

Sorry to hear you're stumbling over words. I know with bulbar onset, it's usually the consonants that are the most troublesome. Can you say "K" and "gah" sounds well? My ALS neuro has me say things like "puhtahkah-puhtahkah-puhtahkah" , "kah-kah-kah" and "tuh-tuh-tuh-tuh."

I'm due for my fifth EMG soon, this time at the Cleveland Clinic. They'll finally test my tongue. I've learned the tongue EMG is only about 50% accurate in detecting ALS. The sternocleidomastoid muscle in the neck has better specificity (80-95%). I'll ask for it.

I've been constantly testing myself by saying tongue twisters aloud. The hardest one for me is, "red leather, yellow leather." Say that 5 times fast!

Other ones you'll hear me saying constantly:

Peter Piper picked a peck of pickled peppers
Fast foxes have food feasts
Give cake to Kate and wait for me a little while
Bobby is up to bat

Enjoy.

Hope your Emory visit goes well.

Thanks. The Neurologist found no clinical weakness at exam last month. The only thing that worries me is my left big toe is dropped a little. I can move it up and down fine and bend it a lot better than i could but just droops a,little. Sorry to see you have atrophy.

Hi Hunter,

I have taking a lumping from some members about my posting. But just had a question about widespread twitching. I have been twitching about 2 months now. At first they were quite a few. But last few weeks have calmed down. I mainly get sporadic random ones in the morning and at night, sometimes I can go hours without them. Then a pop here and there. Hope it's nothing to worry about. I read the BFS person two and was frightening. I do believe though he said his were constant. could be wrong.

Hi Hunter:

Thanks. I know I've gotten a lot of ribbing from the ALS folks right now because it all looks like it's purely anxiety-driven. I hope they are all correct. There was a person on the BFS forum I was following who have remarkably similar symptoms and EMG results to mine. Well, just last month, he was finally diagnosed with bulbar-onset ALS after he started slurring his words.

It seems many of the bulbar-onset folks endure much more widespread twitching than the other types of onset. It's also clear that they bulbar-onsetters don't have positive results appear on their limb EMGs. Only time will tell what I have, but I hope in another six months or so I won't have degraded.

Hi Hunter, my symptoms are similar to yours, and I started in 2001. They definitely progressed until 2003 and then stopped and left me alone until now, that they started to reappear very strongly. I hope you find all the answers you seek, since it could be so many things. Good luck and God bless. Ana

Well, since we have talked I have seen one neurologist who did a cervical mri results states I have mildly herniated disc but it isn't affecting my cord, and an emg of left arm left leg which was said to be normal, and that he didn't catch any twitches. Although they happen all the time everywhere and now even my tongue. So bfs is what I got diagnosed with. Then I saw another neuro who pretty much said the same thing... That I am fine, without even doing much examination. Still having symptoms, hand and feet hurt, low back does too. Still twitching, one side of my body is noticiibly smaller than the other. Hopefully they didn't miss anything. still nervous.

Hi there! It's been a while have you found answers?

My best tip is stop focusing on ALS and start living. All the best. Tillie

Thanks again for your reply. Can you really These twitching in the calf may be due to herniated disc and the injured nerve root? If so, then why come and twitching in other body parts like the biceps, thighs, hands, arms. As I read various websites ALS starts somewhere and then progresses elsewhere. Whether or all of the tension, stress, fear. I do not know how I could stop these twitches.

According to you in ALS has no pain, no tingling, no numbness.
And is it possible that these pains are of a sedentary lifestyle in the last 5-6 months and lack of exercise.

In many sites wrote that the diagnosis ALS is very difficult. Since the beginning twitches were only in the calf, now occasionally appear in the thighs, biceps, shoulder, hip, wrist on hand which also worries me.From 2 months ago appeared a pain in the wrist of both hands that goes to the thumb. And these pains in the legs that begin simultaneously in both legs and then both are removed.These twitches me reflect on the quality of life and work. I have a daughter 3.5 years old and i try to show that it no tension.Great wife who understands me, but I see that extra burden with my problems. This is my facebook if you want to add me: https://www.facebook.com/hristo.gospodinov.585 and skype: gosi73bg. Thank you again for taking the time to my problems. God bless you.

First I want to thank you very much for quick response and for giving me hope that my problems are not related to ALS. I really worry about these twitches, because they are 6 months and do not stop. I work most driving a car. Over the past 4-5 months I almost have no physical activity. From 3-4 weeks I have pain in the muscles of both legs, calves, thighs. Once you take a short pause pain subside. I visited a vascular surgeon, and he said there was no problem with the leg veins. Could this pain comes from immobilization in the last few months or are symptoms of ALS. I drank a lot of medicines like Leksotan, neurotop, setinin, magnesium, tsipraleks, milgama N. fluanksol. Almost all of them treat anxiety and depression, but not twitch.

On 24.10. I did Magnetic resonance imaging in there to install : at the LEVEL of L5-S1 Paramedian hernia of the intervertebral disc with compression of the right root. Not visible secondary canal stenosis on the basis of ligamentary and facet hypertrophy. " In the last 2-3 months appear twitching thighs, arm muscles as biceps, shoulder, buttocks. I have 2 new EMG. The doctor said that currently there is no data for ALS, but I am very worried because I read on the internet that diagnosis difficult place.Please, Your comment to research and do fasciculation or my diagnosis is ALS. Please for help. Thank you in advance

On the 10th day of twiching I did and EMG here is the result of the survey. At rest is from mm.the gastrocnemius muscle you will leave one of fasciculation. Data denervation in the tested muscles will not. When will the abbreviation KV designated maximum muscle contraction, you will leave in diluted record. Conduction velocity in motor and sensory fibers investigated nerves and amplitude of muscle and sensory responses are the norm. The percentage of F-waves for C6,C7,C8, TH1 and decreases strongly pronounced for L4, L5 and the extra long latency S1 are bilateral. The amplitude of H-reflex from m.soleus sin. slightly reduced. EMG data for front root damage are C6,C7,C8,TH1 and strong L4,L5,S1 and easy rear root damage to S1 SIN. Showed no evidence of anterior horn damage.