My Husband Got Sick In January & I am Scared.

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jeff23

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Hi Everyone,

My husband Jeff (44 white male) was healthy as a horse. Strong man, loves his job and loves me so much I am lucky. Married 5 years.

Long story short he got very sick Jan 4th of this year and it started so simply.

His left leg started cramping up on him and feeling weak. No big deal he thought, he's not one for the doctor so he tried to walk it off.

Second set of symptoms happened over the next day or so as he told me his left arm was feeling weak and he was having a hard time swallowing. He started having twitches all over his body and he didn't know what it was. I didn't believe until I saw all the twitches, he recorded them as well.

I finally got him to see a doctor, our GP.
GP got him into a Neurologist pretty quickly. Neurologist did a clinical exam on him which he failed as his left eye drooped on some kind of up gaze test. He had us come back the very next day for an EMG and he rushed us over to the MRI building to get head and neck MRI's same day. After EMG was performed on him (Jan 18th) he told him it was a completely normal EMG. He doesn't know what the up gaze was failure was. Come back in a few months.

So we came back two months later and my husbands has gotten worse. Since we saw the neurologist last he started having major cramping pains in:
his left ankle
his left calf muscle
both of his forearms (this happened for a month then it stopped)
He had to put lidocaine patches on his forearms, ankle flexor and one right on the back of his calf muscle to relive the pain.

So we just got back from our second appointment a few weeks back where he passed the clinical exam even though his muscle showed clear signs of wasting. His EMG was abnormal in 5 muscles.

He has gotten much worse even since then where both his hands and forearms are weak and his muscles are most definitely shrinking. He tried to put on his watch and his wrists are too small for the hand, he showed the Neurologist but he ignored it all. His left tricep muscles is gone all that's left is loose skin. His leg is weak from the knee down and he walks with a limp now.

It's only been 4 months total.

If you don't mind me asking, is this how ALS progresses?

EMG showed previously tested muscles with
less recruitment. What would do this to him?

Am I going to lose the love of my life after only 5 years of marriage?

He was so healthy in December and now really sick. He lost something like 25-30 lbs in the first month.

Sorry I am scared for him and new here. I need a little help understanding please.
 
I'm very sorry to hear about Jeff's illness.

Can you post the latest EMG report (without his name)? EMGs can be abnormal in many ways, so we could be more helpful if we could see what you are referencing in the five abnormal muscles.

What is the neurologist's diagnosis/plan? How was it left when you first heard about the now-abnormal results?

Regardless, it sounds like a second opinion is in order, as we advise for anything this serious, anyway, and you are in a great place to get one, from USC, UCLA, Kaiser or Cedars Sinai. I'd get the ball rolling on that.

Best,
Laurie
 
Hi Laurie,

I’m hoping I am doing this right...

He’s lost the ability to do a lot of things even today he’s worse then he was yesterday. Our neurologist isn’t as helpful as I thought he would be. Muscle wasting is so obvious and he said he saw it.

He fail clinical exam again with his left eye dropping and his walking with a limp and staggering.

Does ALS move this fast to so many limbs and his face?

Thanks for your help.

Scared and trying to put on a brave race.
Jessica
 

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Neurologist plan is to just “wait and see.” As he gets sicker I’m at my wits end.

Thanks,
Jessica
 
The presentation would be atypical for ALS, with so many areas of weakness coming on in such a short period of time.

Also, an EMG in someone with ALS usually shows positive sharp waves, increased insertional activity, fibrillations. His did not. As Laurie says, EMGs can show abnormalities in a variety of conditions, not just ALS. Part of making a diagnosis of ALS includes excluding other diseases which can mimic ALS.

Usually EMG reports have both a summary and conclusions at the end, and often there will be wording such as “suspicious for a motor neuron disease”, or findings “not suggestive of a motor neuron disease”.

If the neurologist was concerned about a motor neuron disease, it’s likely he would have said something to you and your husband. Many conditions declare themselves over time, leading doctors to take a “wait and see” approach. While this is extremely frustrating, it can be helpful in diagnosing conditions that aren’t immediately apparent. I’m sorry you and your husband have to be in this situation.

As Laurie said, a second opinion with a neuromuscular disease specialist at a university medical center would be advisable.
 
Hi Karen,

Thanks for your response. His notes are brief.
They say:
Less recruitment in 5 muscles but no specific Neurogenic findings of wider disease process. Will observe for a wider spread process to present.

So is this considered a dirty emg?
I’ve been reading.

He’s only 44 isn’t that young for such a rare disease like ALS?

Thanks,
Jessica
 
“no specific Neurogenic findings of wider disease process”.

That is a very encouraging statement. My translation of that wording is that the physician doing the test didn’t see ALS staring him in the face. That’s a good sign!

Is it a “dirty” EMG? Yes, there’s a little dirt there, but again, many conditions can cause these sorts of EMG findings, not just ALS. Remember, it’s the big picture that counts— clinical findings over time, ruling out ALS mimics, etc. The EMG is just one facet of the diagnosis process.
 
Dirty is not a medical term. It is not a completely normal study but it is not an emg that would give a diagnosis of ALS. Apparently the plan is to do a follow up. Going to an academic center is not a bad idea. They may want to look at some other tests, possibly do their own emg but some conditions just need time to declare themselves . It is certainly not a definite thing that this will be ALS or any MND based on your postings. Somewhere like Cedars will look at everything

44 is younger than average for non familial ALS. There are certainly people his age and younger who get diagnosed
 
This is what the doctor just wrote back to me after I asked a question over the phone to him.
_____________________________________________________

Good morning Mrs. ____________________
Bottom line - your husband does not have ALS, and he does not have any signs that would suggest the earliest stages either.
The leg findings are consistent with his mild "wear and tear" in his back.
The findings in his hand are consistent with his ulnar neuropathy - he shouldn’t put pressure on his elbows. The minimal changes in a median-innervated intrinsic hand muscle are often seen in healthy hand muscles; they fall within the broad range of normal. They do not indicate ALS.

I hope this helps put your mind at ease.
Please let me know if you have any questions or concerns.
Dr. ——————
——————————————————————-

This seems to scream exactly what you are saying. I need a second opinion. He’s sure of no ALS.

How can he rule this out?

It makes no sense to me.

Thanks,
Jessica
 
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His emg does not meet the criteria for ALS. Apparently his exam did not meet the criteria for upper motor neuron disease either.ALS requires specific things for both emg and exam to make a diagnosis. The emg doesn’t have it. We see that from the report. The doctor did the exam. Those things would lead to his statement.

Some of your description does not sound like ALS either( such as the eye issue).

You are clearly not comfortable with his assessment though so pursue a second opinion at an academic center
 
Thanks Nikki!

We’re schedule tomorrow at UCLA neuromuscular doctors as of right now.

I’ll keep you posted on what the neuromuscular doctor thinks.

Thanks everyone. I’m hoping for anything treatable.

Jessica
 
Good luck. Remember to approach any appointments with the question. These are the symptoms, what is wrong? Asking is this ALS prematurely focuses the visit

Would you be so kind as to change your forum interest? At this point in time your husband has not been diagnosed with any MND. To say he has is misleading to future readers who will see that and think he was diagnosed. Thank you
 
So we saw a very new neuromuscular doctor at Ucla and her performed an emg/ncs.

He found some irregularities but his emg came back normal minus some irregularities like an ulnar neuropathy.

My husband has difficulty swallowing, slurred speech muscle wasting in both hands that clearly visible, his fingers clearly visible, muscle cramps and weakness.

How can he have a normalish emg and all of these symptoms that point to bulbar als. The doctor even said that it was a misfiring in the brain and that the brain was tired. “My husband brain was tired???”
The doctor looked at the muscle wasting and it started twitching and shrugged it off, like it was no big deal.

Can Bulbar onset actually occur like this with a normal emg even when it’s in the limbs as well?

We’re scared and alone on this one. Any advice would be great.
 
What did the doctor say? If this was an attending in the neuromuscular clinic even if this their first year they have gone through a long residency and fellowship after completing medical school. Probably at least 8 years. You don’t get to be an attending at UCLA unless you are very highly qualified.

If they shrugged at twitching it was because twitching doesn’t matter. If they emg’d weak atrophied areas and it was normal that points away from ALS. If the doctor saw all of this then they should have a plan. If these things are happening then something is wrong but it needs more tests and or time to figure out
 
Again, the full de-identified EMG report would help, but what was the plan? How were things left?

You say he is weak. There should be strength testing in the notes about the visit.

Have the limp and weight loss been documented/discussed?

To answer your question, if he had ALS, an EMG would show specific changes whether it started with speech, swallowing, breathing or in the limbs.
 
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