Painful "pre-cramps", ongoing symptoms

[kdunn]

Hello, I have previously posted, link here: Insight needed

I have been struggling with twitching for almost 16 months. Twitching is predominantly in my right leg but also occurs throughout my body (left leg, arms, chest, etc.). I have also struggled with pre-cramps or pain in my right leg.

I've had an EMG done on my right side about 14 months ago and no motor neuron disease was detected. I've seen two difference neurologists as instructed by my Primary Care physician.

Yesterday, out of the blue, I began to develop pre-cramps or pain in both of my arms, hands and back intensely. For me, pre-cramps feel like a cramp that doesn't develop into a full-blown cramp, almost just like a muscle seizing. I've also noticed increased twitching in both my hands and arms and seem to have lost some dexterity and coordination. I still seem to have full strength in both arms/hands.

Would ALS present like this in both arms/hands with painful pre-cramps + twitching? Especially since it all started in my right leg 16 months ago? I'm lost and exhausted. Thank you.

 

[lgelb]

There are benign cramping syndromes, but I would also wonder if your fluid/electrolyte balance is contributing. Have you had labs recently or do you have any history of dehydration/low electrolytes/imbalances? Do you stretch morning and night?

I would also see your PCP to test your reflexes and strength for a new baseline and for them to see what these spasms or cramps look like. But no, this still doesn't sound like ALS.

 

[kdunn]

Thank you! I had blood work this morning so I will see if they see any electrolyte issues. I’ve had extensive blood work a few times over the year because of the twitching and all has been extremely normal so we’ll see if that’s the same in my recent labs.

Yes, I’ve been very health focused, eating well and walk and stretch every day. This arm pain and hand “pre-cramping” is painful and has also moved to my left foot as well.

My neurologist is recommending a repeat EMG in a few weeks which has me concerned.

 

[kdunn]

Hi,

I am having pain or pre-cramp type feelings in my right leg, both feet, both hands and both arms. It is intermittent and comes on fast and goes away throughout the day but consistently comes. It’s not joint related.

From what I can I tell it seems neurologically related. All of my labs and electrolytes are totally normal. As I’ve shared, I’ve been twitching for 16 months. Mostly in my right leg, but also all over (other legs, arms, face, back, etc).

My PCP is referring me to a neuromuscular specialist in Atlanta or Augusta.

I am really scared. Would ALS present like this?

 

[lgelb]

It's unlikely. I expect your appointment will be reassuring as regards ALS. As we have mentioned, benign cramp syndromes are a real thing and not joint-related, as you say.

The lack of impairment over 16 months and what I am presuming were two relatively clean neuro exams is certainly a favorable sign.

 

[kdunn]

Thank you Lgelb. I have a secondary EMG with my Neuro here in 1.5 weeks and an appointment at the Neuromuscular specialist in Augusta, GA in late June. I am very scared and have a few additional questions:

1. I seem to be very hoarse and keep getting food stuck in my throat. However, I can drink liquids fine. Would swallowing issues come on like this with ALS if it primarily began in my limbs?

2. I have some numbness on my right side in both my arm and leg. This is also where my twitching is the strongest. At night, it feels like my right leg and right arm have a dead feeling, but I can still move them. This points away from ALS, correct?

3. Is the cramping in ALS a full-blown cramp that you can physically feel (like a Charley horse)? My cramping or pain is like a "pre-cramp" or pain that occurs quickly, but doesn't leave my muscle contorted or sore later like a charley horse would do. It occurs all over my body but primarily in my right calf, hands, fingers and arms.

3. I've read that cramping is mostly present in the earlier phase of ALS (12-24 months). Does this seem correct? This concerns me as I've been dealing with twitching for 16 months. However, the numbness and cramping began in the last month.

 

[lgelb]

ALS does not usually begin in both limb and bulbar muscles, no.

Numbness does point away from ALS.

Cramping in ALS typically accompanies loss of function, rather than being a thing in itself. If there is true spasticity, which we cannot judge from afar, that could indicate upper motor neuron dysfunction, but again, being able to do all the same things argues against that as a manifestation of MND as well.