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toby1969

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Hello ,
Sorry for the long post - I am terrified to even be writing in this forum. I noticed a "perceived weakness" in my Right bicep(dominant) in the start of April. There has been some wasting/ stretch marks under the skin when pulled a little that my wife could see as well so I headed off to the doc. I have HAshimotos thyroid(10+years now) and it is currently 4.78 TSH (i'm low) working on that as I know it can cause weakness and fatigue which i had but is correcting as my levels normalize, the bicep however has remained the same. I got lots of blood work done which showed an elevated CK (480) , maybe due to the hashi's. I have also had some fasticulations all over - probably BFS.
Anyway I met with a neurologist last week for prelim visit. He did all the usual office strength tests and could find nothing. We discussed the bicep and he said since he didn't know me so he couldn't tell if it had gotten considerably smaller or not. Fair enough. He set me up for MRI with and without contrast of the brain and c-spine this past monday. On wednesday I went in for my Upper NCV/EMG. This is where it gets a little weird and I'm freaking out - my anxiety is so bad right now that my doc has called in a prescript for Zoloft (haven't taken yet).

I arrive on Wednesday for my 10:30 appt. They bring me back to the testing room and the tech performs the first part of the test NCV. From what I saw all was normal-pass. I asked if the results from MRI were back yet and he said no but he'll have the nurse get them. He left saying the doc would be in shortly. I stepped out to the bathroom about five minutes later and I could hear the doc in with another patient. I came out of the bathroom and went back to the room. I heard the doc say goodbye to the other patient and then he went down the hall for like 1 minute max. He then came into the room looking at my MRI papers - he said "wow this is a good looking brain" etc.etc. I promptly said " so no ms or anything?" "no looks good - okay lets get started" -- I then asked about my c-spine as he prepped me for the EMG -" oh looks good no issues" he then began the test on my right arm - deltoid=fine. tricep=fine. forearm=fine. hands= fine. Bicep = FAIL. he poked several times searching for signal or something. At one point he said "push against my hand" I did - I saw the waves go up - he said push harder they went higher -- he said give it all you got and the waves hit the top and bottom of the machine. He didn't say anything but moved over to my left arm and started. All was good. So at the end I ask him, " so does this FAILED bicep possibly mean ALS?" He said " well it falls in the differential but we've got to just wait - time will tell" HERE"S the WIERD PART - He said sometimes a c-spine herniation can cause me to FAIL the EMG as a compressed nerve at C5_C6 could cause bicep weakness (not sure about the wasting) but he glanced at my MRI pics and said," Yeah... the c-spine looks good - so i dont know" -- Im totally freaking at this point and say well what else could cause that? he mentions random myophty etc.etc. I asked what now? he said see you back on monday for the LOWER NCV/EMG and we'll go from there.. he hands me the MRI report, shakes my hand, and quickly leaves - uggh.

I drive home totally freaked. I get home and look at the report. The radiologist report states: #1 at c4-c5 flattening of the thecal sac with mild foramina narrowing #2 at c5-c6 a 3.0mm right parasagital disc herniation flattens the theca sac with mild narrowing of the right neuroforamen #3 at c6-c7 a subligmntous disc herniation flattens the theca sac with mild narrowing of the left neuroforamen. -- What the heck? he said the c-spine looked good? - so my guess is he didn't read the report!

THE QUESTION: Could these herniated discs cause only my bicep to fail EMG due to nerve compression? Basically would nerve compression at c5-c6 mimic the same result as weak bicep from ALS? I am going back monday for my lowers but fear I will fail it too due to the fact that I am having some lower disc issues again on my left side --- I should also mention i had a microdiscetomy of my l5s1 in march - it affected my right leg - causing calf wasting, outside foot pain and three numb toes - it has healed some but not completely - total freaked out - I am driving my wife nuts - please help with any advice --

Best, Toby
 
1 yes that area seen on mri could cause issues with the biceps
2 you apparently do not have specific information on what was seen on the EMG. EMGs are not pass fail. There is a cluster of abnormalities seen on EMG in ALS. You don't know if you even have those specific things. And even if you do there are other things that cause those on EMG. And since the surrounding muscles were apparently normal that points away from ALS. Monday is when you need to discuss the not so fine MRI and find out exactly what was seen on EMG
 
If I was you, when I go back in I would take the report with me and ask him specifically your questions you have about the report. He's the doctor with the degree and should be able to answer your questions thoroughly. If your not satisfied with the answer, go to another doctor for a second opinion. That's what I would do in that circumstance.
 
Hi Nikki,

Thanks for the quick reply - my heart goes out to you being diagnosed with this terrible disease. I guess I don't know how to ask the doctor to revisit the MRI report because it's obvious to me that he glossed over it in the first place - which puts us into an awkward position as patient/doctor -- basically like i'm "calling him out" on the MRI.

Whats also crazy is that Ive asked my primary, a second internist, my endo, my PT doc, and an orthopedic PA and nobody seems to have a clue as to what can cause this spontaneous bicep issue -- I realize that ALS weakness is a complete inability to lift a cup etc. the thing I can't pin down is - is the weakness always sudden like... "yesterday I was fine and today I can't lift this cup at all" ? thats the part that makes me freak out is that I can use my bicep( a bit diminished in strength) which i realize points away from ALS - but to fail the EMG and have the doc say it falls in the differential is the mindblower -- i can't seem to pin down any kind of timeline of progression - i have been feeling the bicep weirdness since beginning of April -- would nerve destruction move this slow?
Best, Toby
 
Hi AKmom, Any thoughts on the single bicep/percieved weakness and slight wasting?
 
ALS diagnosis is a process of elimination. It takes a while to diagnose. It sounds as if you have other issues in the past. Itcould be related to those. One piece of advice is not to doctor hop to chase an ALS diagnosis. Stay with one doctor so they can see the progression if there is any. If it is ALS, it will become evident fairly soon.
 
When radiologists read an Mri, they mention everything they see. It could have little to no clinical significance. It's like noticing a dirty car with small dents. The dirt and dents do nothing to the performance of the car, it is just something you notice.
 
Hi Toby,
Lots of things to say here. First, thanks for providing so many details. They're important.
Second, nobody here is saying you should worry about ALS. The advice you received from Nikki and AKmom and GilWest was perfect. Read the comments carefully. None of them said you might have ALS. In fact, I see the words "points away from ALS" in our smartest member's comment.
Third, take the Zoloft. They say it takes weeks to "take effect" but I found same-day improvement on Zoloft.

Your doctor talked a lot more than most doctors, I think. I get the impression he was thinking out loud, which is a terrible thing for really smart people to do when the patient is deathly worried. The doc has to think of 1000s of possibilities. The problem is that, at your early stage of testing, practically every freaking thing falls within the realm of possibility.

My wife was a 20-year medical doctor before she died of ALS. She was really smart. One of the things I learned from her is that every human body, especially middle-aged, has lots of defects that just don't mean squat in the long run. We all literally have faults in our brains and spine. But they're not meaningful. One doctor might say you have this defect and that defect, and another doctor will simply say "looks fine" because he knows all those defects are no big deal.

A few years ago, full body scans were all the rage. People had their whole body scanned to find every tumor. The problem was that they found lots of stuff that worried the patient, but wasn't really worth excising. I think too much knowledge can be worrisome thing.

Here's why you don't have ALS. A) You have no actual weakness, so none of your muscles are paralyzed, laying limp and useless. B) In all the details you provided, none of it mentioned "denervation." So you might have something going on, but it isn't ALS.

In fact, you mentioned that your bicep had been feeling weird since April. ALS doesn't feel weird. It is just weakness, with no feeling at all.

As Nikki said, you didn't fail the EMG. The EMG merely provides a lot of information that has to be considered in the context of other exams to provide clues.

When you described "wasting," it just didn't count toward ALS, because that's not the way ALS causes atrophy. In ALS, muscles atrophy AFTER they've been paralyzed for weeks or months. And besides, if you had true atrophy, it wouldn't be so little that you'd have to pull the skin to see it. If it were really atrophy, the doctor would have noticed it right off, and said "holy cow!"

And I'm sure you know that twitching just isn't diagnostic of ALS. It's far too common, and ALS is rare. Especially notice that the fascics are "all over" and ALS fascics are highly localized to a paralyzing muscle, not all over.

So keep your appointment and let this doctor chase this problem to completion. In the meantime, relax and be glad that none of this points toward a fatal diagnosis.
 
Atsugi,

Thank you very much for sharing your thoughts and I am sorry for your loss. I will stay the course and pop back in on the thread with updates as whatever is going on with me will hopefully be able to help someone else in some way. In the meantime I will try to remain calm and probably take the Zoloft. As for "denervation" I didn't mention it because I'm not sure if that was going on or present during the EMG , if it was he didn't say anything - he did restick my bicep several times during the EMG trying to find whatever pulse/wave he was looking for - he didn't find it that's why I called the bicep a fail.

Thanks for the positive insight,
Toby
 
Gil,
Thanks for your input. It is appreciated.
Toby
 
Toby,
A lot of people have disk herniations and mild compression. A ton of people, in fact. Your doc was probably saying a spine the way the rpt describes it doesn't usually affect the arm. Which is true. Also thyroid (too much or too little) can cause endocrine myopathies, as he might have been trying to say. One muscle doesn't make ALS, anyway, as others have said.

You are most likely looking at something other than ALS, and it doesn't appear major or unfixable, so be happy, not scared. Celebrate the holiday.

--Laurie
 
ALS is a disease of widespread, acute and chronic denervation.

As Atsugi mentioned, nothing you reported talks of denervation. Get the second EMG, then ask the doctor if on both EMGs there are signs of denervation. Are there signs of acute denervation? In which muscles? Are there signs of chronic denervation? In which muscles? What are the most likely causes of denervation in those muscles? What tests would you do to narrow the possibilities?

I am not a doctor but it sounds to me like you are talking about potential weakness in the right biceps only, not widespread denervation, and could point to a cervical radiculopathy, brachial plexopathy or some other localized condition.

I do not hear ALS in your story. Good luck!
 
Hi Dusty and Atsugi,

Here's the UPPER EMG notes - note the right bicep - any thoughts? Is this Denervation? Triceps and Deltoid both normal. Is this pattern indicative of anything else? The doctor had no suggestions he seemed stumped -- also reminder that the NCV was normal

Scared, Toby

side: right muscle:bicep Nerve: Musculocut Root: C5-C6 Ins Act: Incr Fibs: 1+ Psw: 1+ Amp: Nml Dur: Nml Poly:1+ Recrt:Reduce
Int Pat: 75%
 
an easier read:

side: right
muscle:bicep
Nerve: Musculocut
Root: C5-C6
Ins Act: Incr
Fibs: 1+
Psw: 1+
Amp: Nml Dur:
Nml Poly:1+
Recrt:Reduce
Int Pat: 75%
 
Ok take a deep breath. Yes there are other things that will cause these EMG findings. I still think the issues seen on your MrI are going to account for this. ALS is not found in an isolated muscle. think nerve entrapment. I think the reason you are having a lower extremity EMG is to prove it is indeed an isolated muscle issue
 
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