Do these symptoms point to ALS?

[gingersnaps]

I am new to this forum and looking for information. I am in "no diagnosis limbo". Symptoms that brought me to a neurologist were pins & needles in hands and feet off & on, muscle cramps after biking last summer, and fasciculations where pinky and thumb would twitch and move ,also twitch along arch that would move my big toe. This continues to happen off and on and is noticable at rest on left leg. In January had what was like an attack where my muscles were extremely tight, lower back pain and an episode of painful muscle squeezing in the sternum which lasted 3-4 mins. I continued to work but very spaced out. After that I saw the Dr. and was referred to neuro. Saw neurologist and had MRI of cervical spine and head both normal. Blood work, normal. Neuro exam showed no issues with strength but did show 1+ reflexes in ankles and loss of vibration sense in lower legs. Had EMG which showed chronic, right-sided ulnar nerve denervation. The changes in nerves chronic and likely due to compressive peripheral injury because there is no other explanation. Rest of EMG and and nerve conduction were normal. No evidence of radiculopathy, polyneuropathy or muscle disease. The neuro said I don't have ALS but benign myokymia. She said come back for a followup if new symptoms develop. I can still bike but do about 10miles. I don't feel my muscles are super strong. Any insights would be appreciated. Thanks a lot!

 

[notme]

With clear EMG/NCV it's not ALS--so I'm not sure what you hope we can tell you different. If the leg spasms continue, see if they can treat the discomfort if normal things like warm soaks or hot tubs don't help.

Most of the folks here couldn't do 10 minutes on a bike if their life depended on it. The ulnar neuropathy can cause more damage if you don't have it treated--you might want to see a specialist.

Good luck

 

[Alyoop]

Well the ulnar neuropathy will not explain the numbness in your feet. You have luckily been cleared for ALS and the MRI obviously did not find MS although you have not had your spine done. Your Dr is spot on in telling you to come back if anything worsens especially with unsexplained sensory disturbance in your lower legs. Myokymia can be seen in MS, so you will need to wait and just see, which is hard.
Good luck Aly

 

[Zaphoon]

"Had EMG which showed chronic, right-sided ulnar nerve denervation. The changes in nerves chronic and likely due to compressive peripheral injury because there is no other explanation. Rest of EMG and and nerve conduction were normal. No evidence of radiculopathy, polyneuropathy or muscle disease. The neuro said I don't have ALS but benign myokymia."

I'd be very happy that your neurologist cleared you of ALS!

 

[trfogey]

I am in "no diagnosis limbo".

Actually, you aren't in "no diagnosis" limbo. You are just dissatisfied with the diagnoses you were given. Don't understand why, since you were essentially given a clean bill of neurological health except for your right elbow, but to each his/her own.

Had EMG which showed chronic, right-sided ulnar nerve denervation. The changes in nerves chronic and likely due to compressive peripheral injury because there is no other explanation.

This is the diagnosis for your right elbow and probably explains some of the sensory problems in your right hand. You could consult an orthopedist or perhaps a neurosurgeon to see what, if anything, can and should be done about this -- it's up to you.

The neuro said I don't have ALS but benign myokymia.

This is the diagnosis that explains the muscle twitching you mention in your hand and and foot.

Rest of EMG and and nerve conduction were normal. No evidence of radiculopathy, polyneuropathy or muscle disease.

No evidence of degeneration in your spine, nerves, or muscles -- a good thing.

She said come back for a followup if new symptoms develop.

What symptoms you do have are so minor and inconsequential that they aren't worthy of following up unless something changes -- once again, a good thing.

Any insights would be appreciated.

Congratulations, you are in good health. Go out and live your life like a healthy person instead of burrowing on the Internet seeking information on rare diseases you don't have and aren't likely to get. If your right hand continues to bother you, consult a surgeon about relieving the compression on that nerve.

Good luck and a long happy life to you.

 

[gingersnaps]

To those of you who responded, thank you for being so kind and passing along helpful information.
I do have a few more questions regarding EMG. Here is more detailed info. from EMG report: Motor and sensory conduction are normal in median, ulnar, peronial and tibial nerves. Sensory conduction is normal in right sural nerve. F wave latencies are normal. EMG shows very mild, chronic partial innervation changes in right ulnar-enervator muscles. Otherwise normal in right upper and lower extremity. I was not told that my arm is something to worry about and should consider seeing a surgeon. My index and middle finger hurt when I bend them, otherwise no pain or swelling. I have occassional twitch of my pinky and thumb of left hand so thinking something is probably abnormal in my left arm too. I have pins & needles in all extremities, the reduced vibration sense and ankle reflex. This is just not normal . My neurologist said she noticed a slight head tremor. Are these sensory issues experienced in early ALS? Any insights appreciated and thanks so much.

 

[Alyoop]

No, they are not common in ALS.

 

[trfogey]

I do have a few more questions regarding EMG. Here is more detailed info. from EMG report: Motor and sensory conduction are normal in median, ulnar, peronial and tibial nerves. Sensory conduction is normal in right sural nerve. F wave latencies are normal. EMG shows very mild, chronic partial innervation changes in right ulnar-enervator muscles. Otherwise normal in right upper and lower extremity.

The key word here appears to be "normal". The innervation changes along your ulnar nerve are very mild -- which probably accounts for the lack of advice to consult a surgeon to relieve the entrapment that your doctor suspects in that elbow. Sometimes, the cure causes more problems than it fixes.

I was not told that my arm is something to worry about and should consider seeing a surgeon. My index and middle finger hurt when I bend them, otherwise no pain or swelling. I have occassional twitch of my pinky and thumb of left hand so thinking something is probably abnormal in my left arm too. I have pins & needles in all extremities, the reduced vibration sense and ankle reflex. This is just not normal . My neurologist said she noticed a slight head tremor. Are these sensory issues experienced in early ALS? Any insights appreciated and thanks so much.

None of these sensory issues have anything to do with ALS. ALS is a disease of the motor neurons, not the sensory nerves. There are many potential causes for the symptoms you report -- ALS isn't one of them.

Why are you worried about having ALS?

 

[notme]

There are several differentials for myokymia, which I'm assuming the neuro has ruled out. Understand that no one here is saying something isn't going on--what we are saying is that your EMG/NCV seem to have ruled ALS out. That's a GOOD thing.

Personally, if I had a trapped nerve--I'd want to have it checked by a specialist just to be sure it shouldn't be repaired--but that's just my personal opinion. (Nerves take a LONG time to regenerate once damaged)

All kinds of things can cause numbness and tingling...but ALS isn't one of them.

There are things that can cause problems--and none of yours really sounds like ALS. We'd tell you if we thought they did. If you're having tingling and numbness in the ring and pinky finger--it's very possible something is going on in the cervical spine even. It's also possible there is something along the lines of carpal tunnel going on.

What did the neuo say about the tremor in your head?

You do seem to have various issues going on--but none of them seems to be ALS related--which is a good thing.

 

[sya15]

Not ALS secondary to sensory loss. ALS does not affect sensation. The position your arms are in when cycling can put pressure on ulnar nerve. Guyon syndrome or cubital tunnel. Its common in cyclists. Reasarch it. Thoracic outlet syndrome causes pins and needles in B UE (hands) at night/rest. as far as lower extremeties did they do mri of lumbar spine? could still be related to cycling. however you said numbness in index finger and thumb that involves the median nerve and flexing hurts could be carpel tunnel. Ulnar nerve affects pinky 4th digit and 1/2 3rd digit as well as abd of thumb