Fasciculations

[ck2023]

Hi all. Thank you for your time. I am 54 male. Burkitts Lymphoma survivor for 30 years. As part of experimental protocol (had a 30 % survival rate in ‘93) I had very aggressive chemo and other drug called gmcsf. The two really damaged peripheral nerves. After year of learning to walk again nerves came back in hands and arms. Feet came back enough to no longer have foot drop. Able to totally function for last 29 years save for never getting feet back totally. Cant move toes except to push down and up. Can’t walk on heals but can walk.

Never any fasciculations or tremors until a month ago. About a month ago left ring finger started twitching at rest. Then right thigh. Then noticed both lower legs twitching at rest. Lower legs always there at rest. Visible at rest. Ring finger twitch now hs morphed into both hands being extremely trembly. Not really a twitch.

The tremor in hands is not at complete rest. Not at full use. Only what I think are called isometric tremors. If muscle partially engaged.

Fasciculations in legs are fireworks. All over. Doc said “wow those are some good fasciculations!” They don’t stop. They go from a few every few seconds to 100 in a minute.

Random fasciculations as well throughout body. Thighs, eye, stomach. Shoulders biceps. But all of these are very random. Notice a few a day. The only constant you can see and feel as I write this are twitches in lower legs.

I have no weakness. Doc (physiatrist) said always weakness first with als.

All bloods normal except rheumatoid factor came back at 28 which is a little high.

Does this sound familiar? Obviously worried about MND.

Docs scheduled EMGs for September.

 

[lgelb]

I see no reason to worry about MND and expect the EMG to be reassuring in that regard. I am sure it was very stressful to come back from your neuropathy and as you know there can be late damage from the chemo.

Since this level of twitching is new, I would certainly look hard at all your support surfaces (including considering new shoes/insoles), your sleep, nutrition (e.g., all the electrolytes), hydration, stretching, etc. The different regions feed on each other and so it is not really about the pattern but more about the fact that you are twitching overall.

As you will have read, benign fasciculation syndromes that involve lots of areas of the body are common and often improve if you shuffle the deck. Even if there is some kind of systemic or muscular issue, odds are it's considerably less sinister than ALS.

Best,
Laurie

 

[ck2023]

Thanks very much. Appreciate the kind response. All my best to you. Craig

 

[ck2023]

One more development. My EMG not for two weeks. Each day I have more and more hand symptoms. Now both hands extremely shaky even at rest. More shaking against gravity. So if both hands resting on lap the little muscles around fingers are trembling doing a lot of work and vibrating just to try to keep still. Scaring me. Again no functional weakness. Hands are just tired and fingers dancing side to side and up and down. Fasciculations in both legs constant. Seem to have more in thighs now but constant constant in lower legs. Thanks.

I should say resting on lap palms up to be specific.

 

[lgelb]

Sounds no more like ALS than your first post. Don't hit pause on your life while awaiting the EMG.

 

[ck2023]

Thank you. Appreciate response.

 

[ck2023]

Saw neurologist. He does not think fasciculations related to my existing peripheral neuropathy unfortunately. He excited the muscles manually. Was very hard on them. Thighs, calves, hands. He saw some proximal muscle involvement that interested/concerned him. Will do EMG. He ordered bloods for various autoimmune diseases. He said 60-70 percent chance this is benign even with proximal hypothesis. He seemed very good. Spent a lot of time. He is more concerned with autoimmune diseases for me at this point than ALS. But said EMG needed to rule out ALS. He said interestingly that given symptoms and his physical he thought 7 weeks from fasciculation onset is too soon to have weakness but right amount of time for EMG to not have false negatives. EMG tomorrow. Thanks.