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eyeballs

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Hello all, and a sincere thank you for being here and sharing your thoughts--

I am curious to hear about your experience with paresthesias (burning pain, tingling, or numbness) in ALS/MND. Have any of you had paresthesias as the first symptom of ALS or other MND? How would you describe them, and how long was it before motor symptoms appeared?

Me, I'm a somewhere-between-alarmed-and-panicked 41 year-old dad and veteran who's had patchy, relatively mild burning-tingle sensations over the last 9 months that would come and go often in the same area (medial thigh, left flank, back of the left hand) lasting several hours to several days. 3 months ago saw the start of constant soreness and occasional spasms in both forearms. Over the last several weeks now I have felt frequent fasciculations present in all extremities and also the torso. There's no appreciable weakness, except trouble typing (due to sore forearms?) and maybe a new "slushing" of some of my 's'es. Reflexes are "brisk" but "normal" per neurologist, MRI brain/c-spine and lab workup were unremarkable; EMG is pending.

Thoughts? Impressions? Any similar folks out there that started with sensory-only symptoms?

Best wishes to all,
S
 

Bestfriends14

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Hi S,

Can I ask what made you come to an ALS forum as ALS is a motor based disease and not sensory?

The symptoms you described are not one bit the symptoms hubby had as an onset to his ALS. Again, ALS= motor, not sensory.

A quick Google search would have led you to information on ALS being a motor neuron disease with no presentation of "all over the body" at outset.

Just curious why the leap to such a rare disease.
 

eyeballs

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Hi Bestfriendstilltheend,

Thanks for the response. I suspect many of us posting here are like me in that we don't necessarily feel it's *likely* we have ALS; we're concerned it's *possible*. A worried mind imagines the worst.

Secondly, I wouldn't be wasting everyone's time with this thread if my motor symptoms weren't at this point predominant. They are. Yes, I have features that point away from the diagnosis, but no, it's not ruled out. The medical literature indicates that a minority of patients experience sensory symptoms in the early stages of MND--but the reported details are vague, and in the absence of solid epidemiological information, I thought it reasonable to poll this group's experience.

Thanks again for the response. I'll look forward to hearing from anyone who had significant sensory symptoms at the outset (pre-diagnosis stage) of their disease.

S
 

ShiftKicker

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Perhaps you can provide the complete picture instead of providing just symptoms that are not usually connected to ALS- a disease of motor neurons. The people here are only able to help if they are provided all the info and not just select impressions. Where are you at in actual medical care and diagnostic pursuit? Have you seen a doctor? How old are you? What is your full experience?

Please understand if you do not give a whole picture, you can not get an informed and complete answer. This is not the place to take a survey because you are curious about one facet of a very complex disease.
 

Clearwater AL

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Ok, let's take a short cut...

"Reflexes are "brisk" but "normal" per neurologist, MRI brain/c-spine and lab workup were unremarkable; EMG is pending."

Check back with the Forum when you have the summary/impressions from the EMG.
 

eyeballs

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Emg was normal. Neurologist thinks benign fasciculation syndrome. I like that idea, am going along with it!

Thanks, folks. Take care.
 

Bestfriends14

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So glad to hear!
 
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