Husband is at a low risk for ALS

[KarenNWendyn]

EMGs reflect muscle activity. I’m confused how it might show sensory problems. Do you mean nerve conduction studies? Either way, it is best if we could see the report.

 

[lgelb]

For clarification, Karen, many here use "EMG" to refer to the combination of EMG + NCS, so we kind of roll with that.

 

[Mariejan]

EMGs reflect muscle activity. I’m confused how it might show sensory problems. Do you mean nerve conduction studies? Either way, it is best if we could see the report.

Yes, it was a nerve Conduction Study that showed sensory problems in both of his legs along with fasciculations.

 

[Nikki J]

The ncs abnormalities point away from ALS as do the symptoms as previously noted. Whose decision was the referral to an ALS clinic? It would seem the wrong place and a waste of everyone’s time and energy. I don’t understand - it sounds like he should go to the peripheral neuropathy clinic probably

What did the pcp say?

 

[Mariejan]

His PCP wasn’t very helpful, just gave him anti anxiety meds. His was his neurosurgeon that referred him (he recently had brain surgery for a fistula.) I know someone said feeling like his balance is off is not related to als but we’ve read that on a few different websites that feeling like you’re balance is off IS a symptom of als. He’s felt like that all day today.

 

[Nikki J]

Please link your references for this. PALS have poor balance because of weakness. No one here has agreed with you they feel off balance nor have any of my family or ALS friends reported this. Added to this is an emg that does not show ALS but rather an ncs of a sensory nerve issue.

Lists of symptoms often found as a general introduction can be very misleading and I wonder if this is what you are reading

 

[affected]

Every time my husband went over and crashed to the ground he was totally stunned as never once did he feel 'off balance'. His legs would simply fail, suddenly.

I would also like to see links to where you have been told this, as we have never had a PALS report it.

 

[lgelb]

Not knowing how extensive the brain surgery was, it seems natural to ask if the numbness/
tingling/ cramping/twitching could be related to this surgery -- a question for his neurosurgeon and neuro.

As for feeling a loss of balance, since you said he had an ear infection and took antibiotics, I trust he has been cleared of any remaining infection?

None of this speaks to ALS.

 

[Mariejan]

Please link your references for this. PALS have poor balance because of weakness. No one here has agreed with you they feel off balance nor have any of my family or ALS friends reported this. Added to this is an emg that does not show ALS but rather an ncs of a sensory nerve issue.

Lists of symptoms often found as a general introduction can be very misleading and I wonder if this is what you are reading

Hi Nikki, thank you for helping me understand. I’m not sure how to include a link but we found the balance issue on alsworldwide.org under early symptoms of als/mnd.

 

[Mariejan]

Not knowing how extensive the brain surgery was, it seems natural to ask if the numbness/
tingling/ cramping/twitching could be related to this surgery -- a question for his neurosurgeon and neuro.

As for feeling a loss of balance, since you said he had an ear infection and took antibiotics, I trust he has been cleared of any remaining infection?

None of this speaks to ALS.

We did ask the neurosurgeon if any of this could be related and he did not think so. That was my first thought. Yes he has been cleared of an ear infection and he completed his antibiotics but his PCP said it may be an inner ear issue. Just seems like it’s been happening for too long to be an inner ear issue.

 

[Nikki J]

The link says problems with walking and balance. As I stated the balance issue is not a feeling for us it is a consequence of weakness. Example. I can not balance on one foot at all. Why? Because both legs are too weak to support me individually. I feel completely normal.

I hope the difference is now clear

 

[dldugan]

The balance issue/symptom given by many organizations is not an issue of dizziness, but as I experience it one of changing body capabilities. Before ALS if I lost my balance and stumbled my feet could shuffle to regain balance. Now a stumble cannot be corrected account of loss of strength and motion in my limbs and may well end in a fall. To prevent those falls I now use a cane for short distances and a rollator for longer. When in my home I don’t use the cane, but I do furniture surf to maintain balance. The ALS Clinc I visit recommends exercises to improve balance.

Karen,

Balance issues from limb and body weakness is not vertigo or dizziness. Yes, there are a lot of ALS references on balance. Balance is an issue when on has foot drop, leg weakness, fatigue, toe drag, etc. My loss of balance is associated with movement.

 

[Mariejan]

Does weakness feel like your legs are tired? That’s what he’s been saying the past few days. He was able to get in tomorrow to see an ALS specialist.

 

[grounded]

My first sign of weakness was tripping when climbing stairs. I now wear AFOs on both legs & need a cane or walker for short distances & wheel chair for longer.
To this day, my legs don't feel weak or tired. ALS weakness means there are things you are unable to do.

 

[dldugan]

Glad you could get in to see specialist. Could be misleading to give feelings on leg weakness for comparison. I suspect there are a lot of different descriptions of the same feelings/condition.