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fredsin

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Joined
Nov 16, 2016
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3
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Lost a loved one
Country
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NY
Hi All,

This is my first time writing about ALS in any support forum ever. My mother died of ALS this past March. I was able to get through my mother's battle with ALS with the support of friends and family. But now that I am exhibiting suspicious neurological problems, just half a year after my mother passed, I feel I can't lean on those people anymore. They're just too worn out, as am I.

In September, I developed foot drop in my left foot. No pain. I have spontaneous fasciculations that occur mostly in my calves and thighs, but have also occurred in arms and even trunk. When I flex my leg muscles, there is a "shimmer" of nerve twitches that is alarming looking.

MRI of the spine showed a possible disc bulge in thoracic could be the cause. An EMG out -ruled the disc bulge. While no widespread denervation was detected, the EMG showed "severe peroneal nerve dysfunction across the left fibular head." I also had isolated fibrillation potentials in my right leg (unaffected leg) "of unclear significance." Although there is some "axonal degeneration," the report found "focal dymyelination" to be the primary cause of the foot drop, consistent with a nerve compression. However, after a MRI of the leg, no nerve compression showed up. So that too has been ruled out, and I am waiting to see the neurologist.

The only positive is that angle of the foot drop, over the past couple of weeks, has not been as severe. I was almost dragging my foot before. Now it is not as pronounced. It still seems as weak as it has been though. When I strength test it, it is easily pushed down and my left toe has no strength. My left leg is also weakened, with muscle atrophy.

Since my mother died of ALS in March, of course I know a lot of you think this is probably all in my head. I assure you, it isn't. I would be the first to wish it was. I am only hoping that this is just some cruel trick the universe is throwing at me. But my feeling is when it quacks like a duck....well, I'm no fool. I'm an intelligent, level-headed person.

The good thing is, my mother did get tested for familial ALS and she didn't have it. I'm wondering if there are cases of familial ALS that just start up. Or if those genetic tests don't always capture it. Also, the angle of the foot drop has improved a bit. That is giving me some encouragement, though the continued muscle weakness and fasciculations are obviously discouraging.

Thanks for listening and for any feedback. It does not have to be encouraging feedback. I'm here for honesty. Thank you.
 

GregK

Extremely helpful member
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
Mod note: moved thread to dihals
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,207
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Sorry about your mom

Who has been conducting the investigation so far since you have not seen a neurologist? Who performed the EMG? What have you been told about the differential?

Your symptoms are concerning but your tests do not seem to show ALS

Re FALS. Why did your mother have a genetic panel? Although some neuromuscular doctors are testing everyone for c9 it is unusual to do a full panel if there is no concerning family history. The panel does not completely rule out FALS as there remain unidentified genetic defects. I believe the current panel will find a genetic cause for a little over 60 per cent of FALS.

When do you see the neuro?
 

lgelb

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Nov 5, 2009
Messages
7,238
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Lost a loved one
Diagnosis
09/2009
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US
State
WA
Hi, Brooklyn,
I'm sorry to hear about your mom.
Did you have a brain study? I certainly don't see anything in what you've said that suggests ALS as the top differential, though it would be good to know more about the EMG.
I'm a little confused about the sequence of events, but it doesn't sound like any diagnosis has been rendered as yet, and as you know, even if/when you receive one [of anything neurological], you should get a 2nd opinion.

Best,
Laurie
 

fredsin

New member
Joined
Nov 16, 2016
Messages
3
Reason
Lost a loved one
Country
Uni
State
NY
Sorry about your mom

Who has been conducting the investigation so far since you have not seen a neurologist? Who performed the EMG? What have you been told about the differential?

Your symptoms are concerning but your tests do not seem to show ALS

Re FALS. Why did your mother have a genetic panel? Although some neuromuscular doctors are testing everyone for c9 it is unusual to do a full panel if there is no concerning family history. The panel does not completely rule out FALS as there remain unidentified genetic defects. I believe the current panel will find a genetic cause for a little over 60 per cent of FALS.

When do you see the neuro?
Thanks for replying! I saw an spine surgeon first, since they thought it could be the bulging disc. He ordered up the EMG and that outruled that as the cause. He then had be see an associate of his who specializes in operating on peripheral nerves. He ordered up the second MRI, and that outruled any peripheral nerve damage, so he's kicked me off the the neurologist.

As far as I know, my mother got tested because she has four children and wanted us to be informed if there was a familial concern. That's as much as I know about that.

Are you saying my tests don't indicate ALS because the EMG isn't showing anything, other than the peroneal nerve dysfunction? So if ALS was in its early stages, the EMG would still show a lot more than that?

Thanks.
 

fredsin

New member
Joined
Nov 16, 2016
Messages
3
Reason
Lost a loved one
Country
Uni
State
NY
Hi, Brooklyn,
I'm sorry to hear about your mom.
Did you have a brain study? I certainly don't see anything in what you've said that suggests ALS as the top differential, though it would be good to know more about the EMG.
I'm a little confused about the sequence of events, but it doesn't sound like any diagnosis has been rendered as yet, and as you know, even if/when you receive one [of anything neurological], you should get a 2nd opinion.

Best,
Laurie
Hi Laurie,

Thank you. I have not gotten any diagnosis other than foot drop. Seeing the neruologist in early December. Have not had a brain study -- just the two MRIs and one EMG.

What would you be looking for in regards to ALS being the top differential? Foot drop, muscle weakness and atrophy, and fasciculations seem pretty scary to me -- but it would be good to hear what would really be the top indicators.

Thanks,
Fredric
 
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