Status
Not open for further replies.

curtrill

Active member
Joined
Apr 25, 2011
Messages
40
Reason
Learn about ALS
Country
US
State
TN
City
Hometown
Thankfully, I have just completed my third clean EMG in six months. The first was of two limbs / the second was three limbs and thorasic / and the last of two limbs, thorasic, pectoral, neck and under the chin. However my symptoms which started 7-8 months ago continue. I am wondering if all this could be UMN and how much may be LMN and would have shown up on the EMG if MND related.

HEAVY, STIFF, FATIGUED LEGS. Started in both calves and has progressed up legs to glutes. Tightness, fatigue occurs while standing or walking and goes away for the most part at rest but can always be felt to some degree if the muscle is stretched. Legs "feel" weak but are not clinically weak. Can actually gain a small bit of strength with exercise but not tone.

LOSS OF MUSCLE TONE IN LIMBS. Especially in the calves where the muscles are flaccid, floppy and loose when relaxed....hypotonia? LMN? An area of suspected atrophy was needled at the last emg and showed nothing.

ASYMMETRIC LOSS OF MUSCLE TONE....ATROPHY? This is on the right/dominant side in the great toe, foot, calf, bicep, pectoral. UMN/LMN?

MUSCLE JERKS Random movements of hand, finger, foot, leg etc. Seem to occur more so when I have anxiety. My jaw was slamming shut during sleep but seems to have stopped....anxiety?

FATIGUE, LOSS OF STAMINA. 10+ hours of sleep and fatigue persists.

SORE, FATIGUED VOICE AND THROAT. Throat has started making a "clunking" sound on the right side when swallowing.....especially when lying down. No big problems swallowing but foods do seem to "stall out" at the top of the throat at times.

TONGUE FATIGUE AT BASE WHEN EATING. Tongue is also white and furry with a widening groove in the center with teeth marks on edges. Tongue is a bit smaller on the right, front side. UMN? LMN?

FASCICULATIONS Of couse....started in the calves now bodywide....Aren't these LMN and if pathalogical would have shown some bad company (fibs,psw's) on EMG?

NOT MUCH PROBLEM WITH CRAMPING.....Not sure how SPACTICITY would present. Can it occur without you knowing it?

REFLEXES have been rated 2,2+,3 depending on the limb and who did the exam and on which visit. They are symmetrical. Upon the last exam the neuro said they were a bit quick but not pathalogical (2+).

EXAM All other parts of the exam were clear. No clinical weakness. Negative jaw jerk, Hoffman, Babinski. Motor skills good. Recent visits and last two emg's have been completed at an ALS center at a major teaching university. The last emg was done by a young neuromusclar specialist that sees about 30 ALS patients.

Tests for mimics have been completed. Neuro states "I have no other tests to run". I know that the neuros are the authorities. I also know the people on this forum have valuable insight that I respect as well.

Could this all be UMN and not detectable on EMG?

Wouldn't calf muscles that have asymmetric decrease in size, tone show on the emgs if related to MND? Isn't that LMN?

Would clean emg of the tongue (one needle insertion) from under the chin rule out LMN?UMN?........would it rule out PLS?

Not looking for any EMG debates just some help trying to sort all this out....

Wright , can you help too?

Thanks to all for reading this. Thanks in advance for all replies!

Curtrill
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,794
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
If you read your other posts you will have all the answers you need. Enjoy your life!
 

trfogey

Very helpful member
Joined
Jan 31, 2008
Messages
2,017
Reason
PALS
Diagnosis
07/2007
Country
US
State
NC
City
Raleigh
If your (several) doctors believed that you have UMN problems, they would have told you so. There's no reason not to tell you -- you either have them or you don't. If you want to know the answer, ask them directly and quit trying to read between the lines of clinical notes. You simply don't know enough about medicine to do it.

If your condition could be diagnosed by a layman with an Internet connection, it wouldn't have the experts stumped, would it? Continuing to try to diagnose yourself via the Internet is causing you way more anxiety than it's worth. Stop doing it.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
What is it you're trying to sort out?

IF you had LMN it WOULD HAVE SHOWN ON THE EMG. Period.

IF you had UMN--trust me, you wouldn't have to ask if there was spasticity. It's PAINFULLY obvious I mean that literally--it freaking hurts. (at least mine does) IF you had UMN ONLY whatever--your legs wouldn't be FLABBY.

flab and atrophy= LMN = POSITIVE EMG (DIRTY EMG)
Tone, hyper reflexes, spasticity = UMN

Did your doctor say ALS or MND or some variant? What are THEY telling you?

Also--even with UMN and LMN it does not necessarily mean ALS. I have LMN (severe atrophy) in my arms and UMN signs in my UMN in my legs. UMN signs would show on a clinical exam. PERIOD. If they did not--then you have no worries as far as ALS goes.

In answer to your question "COULD THIS ALL BE UMN and not showing on EMG" the answer is no. It would have shown on your perfectly normal neurological exam.

Even if you had UMN and LMN in the same limb--the EmG would pick up the LMN. The clinical exam would show the UMN. 7-8 months with no clinical weakness, normal exams, normal EMGS means there is NO ALS or other MND.

Good news for you. Go out and enjoy your life.

Trust me, no one here with ALS can 'build their muscles" that are affected with the disease.

If they have ruled out MG--and I'm assuming they have with all the bloodwork--then the weakness that gets better with rest is just that--your stamina.

Ask your GP about Chronic Fatigue Syndrome and Fibromyalgia (but since isn't a complaint, Fibro isn't likely). I'm assuming your docs have done all the routine tests such as potassium, thryoid, etc (they are routinely done when fatigue is one of the complaints)

If you're sleeping 10+ hours a night, CFS or Fibro are much more likely. Even something auto-immune -- again, if it hasn't been ruled out by blood tests.

What exactly seems like an ALS symptom to you? (Rhetorical question)

As Ms. Pie would say: Any day you waste is gone forever. Enjoy your life. Treat your anxiety. Read up on BFS. People with ALS or PLS don't have "body wide twitches"
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
curtrill,you have no lmn signs on emg and no umn signs on clinical exam..............as far as anything neurological you have been given a clean bill of health.
 

EGBAR

Distinguished member
Joined
Jun 8, 2011
Messages
171
Reason
PALS
Diagnosis
06/2011
Country
US
State
FL
City
Niceville
If you had 2 clean EMG's why in the world would you have a third one. I am confused.
 

curtrill

Active member
Joined
Apr 25, 2011
Messages
40
Reason
Learn about ALS
Country
US
State
TN
City
Hometown
Thanks for the replies,

Notme,

I have noted in other threads that "tight, heavy legs" may be UMN. Also I have noted some PALS with limb onset feeling this way. Obviously limb onset LMN would be picked up on EMG. If what I am experiencing is UMN could I have loss of tone and asymmetry? From what I understand now that wouldn't be the case. Muscles would hypertonic even at rest....is this true?

Another question I had with this continued progression in the legs would some of the cramps, spacticity be yet to come? Would that be a later progression? (this started 7-8 months ago)?

At the last visit the nuero said Bulbar onset could be ruled out. I assumed limb onset would be too by clean EMG. I told him I was no longer concerned about limb onset. He didn't disagree. I asked about PLS UMN dominant and he could not rule them out. Thus my questions about could this be all UMN.

I cannot "build" my muscles. I can strengthen them a little but the size and tone stays the same. When I exercise the muscles get tight feeling.

They have ruled out MG, Fibro and GP says CFS wouldn't explain symptoms.

Yes thyroid and routine bloodwork has been done.

What has me most concerned is the tightness, floppy tone and asymmetrical changes on the dominant side.
 

curtrill

Active member
Joined
Apr 25, 2011
Messages
40
Reason
Learn about ALS
Country
US
State
TN
City
Hometown
EGBAR,
The neuro that took over my case agreed to a third EMG after I expressed my concerns over some areas that were not needled on the other EMG' s. Like the tongue.

Anybody,
He did the tongue on the last EMG through one stick under the chin not in the tongue. Any opinions on this method and does it rule out UMN and or PLS? I have read on some places on this site that it does and other places it is LMN.....? Can both be true?
 

sadiemae

Very helpful member
Joined
Sep 20, 2009
Messages
2,397
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
my husbands emg of the tongue was done through his chin.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
curtrill,you keep going on about floppy tone to your muscles which i think your refering to hypotonia.
hypotonia is not just caused by lmn involvement,it can manifest in many neurological deseases effecting the spinal column and the cerebellum.
hypotonia means..........the impairment through injury of the natural pathological ability for a muscle to contract.
its pathological and can be picked up on a clinical exam..............its not the same thing as floppy muscles from lack of exercise.
i have pls but i also have hypotonia in my left lower leg,it was explained to me that it was caused by a severe acute umn lesion in my spinal cord..........spinal shock causing the hypotonia in that lower leg.
i also have clinical weakness in that leg,and i can tell you if you had something wrong it would have shown up in your clinical exam.
even with hypotonia and clinical weakness in that leg i have no lmn signs such as atrophy.
emg on the tongue would be to rule out lmn bulbar involvement.
why bulbar emg so soon after limb symptoms? als starts as limb onset or bulbar onset same goes for pls.
seems to me the neuro you are seeing are just agreeing to do the emg's just to ease your mind...........if you asked for them they are wrong to do it without any clinical evidence.

once again you have no pathological or clinical signs of als or pls.........period!
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
US
State
Fl
City
Orlando
Thanks for the replies,

Notme,

I have noted in other threads that "tight, heavy legs" may be UMN. Also I have noted some PALS with limb onset feeling this way. Obviously limb onset LMN would be picked up on EMG. If what I am experiencing is UMN could I have loss of tone and asymmetry? From what I understand now that wouldn't be the case. Muscles would hypertonic even at rest....is this true?

Another question I had with this continued progression in the legs would some of the cramps, spacticity be yet to come? Would that be a later progression? (this started 7-8 months ago)?

At the last visit the nuero said Bulbar onset could be ruled out. I assumed limb onset would be too by clean EMG. I told him I was no longer concerned about limb onset. He didn't disagree. I asked about PLS UMN dominant and he could not rule them out. Thus my questions about could this be all UMN.

I cannot "build" my muscles. I can strengthen them a little but the size and tone stays the same. When I exercise the muscles get tight feeling.

They have ruled out MG, Fibro and GP says CFS wouldn't explain symptoms.

Yes thyroid and routine bloodwork has been done.

What has me most concerned is the tightness, floppy tone and asymmetrical changes on the dominant side.
I don't know, hon. My UMN signs are in my legs--and floppy sure isn't part of my particular issues. My legs look fine--they just don't work for crap. Spasms and spasticity and charlie horses are a daily issue for me. But--I also have positive Babinski, absurdly hyper reflexes and and, according to my neuro, a spastic gait. My UMN signs come out and hit ya in the face--the doc had no trouble noting them on my clinical exam. (I am also not diagnosed with ALS--that's just the leading differential from my ALS specialist) She is still also considering MS as many of my signs are UMN vs LMN. My LMN signs are in my rib area, face and both arms. I have absent reflexes in my arms and atrophy in both of them.

MG can be ruled out with certain specific blood tests--how was Fibro ruled out? It doesn't have a blood test--but then, pain isn't one of your major issues, is it? fibro definitely causes pain. CFS causes all kinds of symptoms.

Personally--I'm hoping for MS or PLS since the alternative is fatal. I use a walker to walk. An O2 tank to leave my house and have a nearly useless dominant arm. So, believe me when I say that I can relate to unanswered questions.

Exercise is impossible for me. I can't increase anything exercising--it worsens all my symptoms. Weakness is an understatement. My legs are in a constant state of spasm (though my baclofen helps) so they "feel" very toned--to me and to the doctor. HYPERtonia--not hypotonia.

But---I'm no expert. Others here are much more knowledgeable.

Edit to add: Listen to Olly. Apparently, I misunderstood my doc's explanation as to why my legs "look" great but work like crap. LOL. I'm so confuzzled
 
Last edited:

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I was going to reply to this thread but I think the horse is already dead. No sense beating it any further. Besides, I like horses.
 

curtrill

Active member
Joined
Apr 25, 2011
Messages
40
Reason
Learn about ALS
Country
US
State
TN
City
Hometown
Come on Zaphoon,
I've read several of your threads and respect your input. Nothing to add?
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
just to clarify without hopefully getting people confused............with umn disease you can get some flaccidity/hypotonia.........yes its true as my old pt ang gp told me and i looked it up.
pls is caused by umn lesions,during the disease process after a new lesion appears you can develop temporary hypotonia..........spasticity to floppy.........attack to shock, then it goes back to hypertonia again.
this is what happens in spastic paralysis resulting in progressive weakness.
unfortunatly this does not explain why my leg never recovered and i still get spasticity in that leg regardless..........must have been one humdinger of a umn lesion.
if your still confused i will try and find the article explaining this.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
i want to "like" your post pz but theres no like button showing,not on mine either...........consider yourself liked.
 
Status
Not open for further replies.
Top