Finally Some Answers, Any advice would be welcome

[NotKnowingSucks]

Just got back from neuro and world renowned EMG Neuro muscular doctor. He tested all of my muscles and found my sternoidmastoid muscle had been dinervated and reinnervated which is why it is much smaller than the other. According to my findings they say I have upper motor neuron involvement at this time only. There is no active denervation going on in my body at this time that they can find.

I have hyper reflexes on my left side
muscle weakness and rigidity in my left arm, shoulder and leg
twitches going on throughout my body
swallowing problems
weak neck
negative babinski
negative hoffman


Neuromuscular doc said all symptoms point to UMN lesion of some disease process.

Still need to sync up with neurologist to see what he is thinking here because it seems like UMN involvement is an obvious indicator of disease.

Does anyone else know of any other diseases that could affect UMN area?
All MRI's have been clean thus far
EMG was clean minus the rinervation the doctor found in my left sternomastoid muscle
No active denervaqtion is occuring at this time but My muscles are tight and weak on my left side.
hard to type with my left hand can only use one finger with major loss of dexterity.

Could MS do this? Does ALS start off UMN and then work its way down?

Any opinions are welcome, I would love to know what you guys think.

 

[trfogey]

Just got back from neuro and world renowned EMG Neuro muscular doctor. He tested all of my muscles and found my sternoidmastoid muscle had been dinervated and reinnervated which is why it is much smaller than the other.

For that much atrophy to have occurred, that muscle must have been denervated for quite a while. How long have you had trouble tilting your head forward and turning your head from side to side?

According to my findings they say I have upper motor neuron involvement at this time only. There is no active denervation going on in my body at this time that they can find.

That's good. It's certain that you don't have ALS at this point in time.

I have hyper reflexes on my left side
muscle weakness and rigidity in my left arm, shoulder and leg
twitches going on throughout my body
swallowing problems
weak neck
negative babinski
negative hoffman

Sounds consistent with UMN presentation, except for the Hoffmann and Babinski signs, but some folks don't show those signs.

Neuromuscular doc said all symptoms point to UMN lesion of some disease process.

Still need to sync up with neurologist to see what he is thinking here because it seems like UMN involvement is an obvious indicator of disease.

Why would you need to sync up with your old neuro? The UCLA guy is likely to be much better suited to managing a progressive disease.

Does anyone else know of any other diseases that could affect UMN area?
All MRI's have been clean thus far

Anything that can cause damage to the motor cortex of your brain can cause UMN dysfunction. That could be from injury, tumors, and several degenerative brain disorders such as Huntington's disease, Parkinson's disease, frontotemporal degeneration, and a host of other disorders. The only thing that will tell the tale is further testing and time.

EMG was clean minus the rinervation the doctor found in my left sternomastoid muscle
No active denervaqtion is occuring at this time but My muscles are tight and weak on my left side.
hard to type with my left hand can only use one finger with major loss of dexterity.

At least ALS is off the table for the present. Clean EMGs == no LMN involvement == no ALS. That's something to celebrate.

Could MS do this? Does ALS start off UMN and then work its way down?

Yes, some folks with ALS do start off with a UMN-dominant presentation. They don't get diagnosed with ALS until LMN symptoms show up though. That's the distinction between PLS and ALS.

 

[rose]

I'm glad you got somewhere as far as answers go. Trfogey gave you excellent advice.

I just wanted to clarify something that you wrote:

Does ALS start off UMN and then work its way down?

UMN does not refer to the part of the body, but where the motor neurons are located in the brain. You may very well know this, but, in the interest of all who will read this in the future, I thought it should be clarified.

Here is a helpful illustration:

 

[rose]

Lets try this reply again.
http://www.csuchico.edu/~pmccaffrey/syllabi/CMSD 320/362unit10.html

This should help you with understanding UMN versus LMN. An earlier post of mine should show up eventually.

Even though this particular educational web series has to do with speech and swallowing, it still gives a good explanation of UNM and LMN locations and their function.

 

[NotKnowingSucks]

TRFOGEY,

For that much atrophy to have occurred, that muscle must have been denervated for quite a while. How long have you had trouble tilting your head forward and turning your head from side to side?

Answer: this atrophy happened back in 2006, I think the muslce has been reinervated since then seeing the muscle has not shrunk noticeably since then. The Neuromuscular doc also mentioned for this to be going on since 2006 he doesn't think this will ever turn into ALS but it seems more like problems with my c1 or c2 vertibrae or MS which can cause UMN lesions.

I have pain in my thoracic part of my back I wonder if I need a t-spine mri, maybe i will show lesions there? I want my neuro to really try and find out what is wrong with me fast here so if i have MS i want to alter the course of the disease.

clean MRI's of cerv spine and brain doesn't always mean no MS as far as I can read. I guess I am in denial of what this could be and of course scared.

 

[johnnyliverpool1]

now u say negative babinski..that means u aint had or got a babinski sign.u say negative hoffmans, so u aint got hoffmans sign either..correct..........cos if they were positive they would exist..no............or am i missing summatt.......babinski either exists or is neither positive nor negative...follow my drift..a neuro would say...u showed the babinski sign....but would not say ,,u didnt show the babinski sign...or say ur babinski was positive cos to be posjtjve it would have to have been negative and it could not have been negative cos it would not have been there.....so of course i am now confused cos u say they were negative which means i aint got a clue wether u had the signs or not..i have now a headache..am off to stick my head in an oildrum......johnny

 

[NotKnowingSucks]

johnnyliverpool1,

I do not have those signs meaning i was negative for those signs. Both tests resulted in not having those signs.

I do not have:

Babinski sign
hoffman sign
jaw jerk
ankle clonus

The only thing I do have is:
Brisk Reflexes on the left side
Weakness on the left side, arm, leg, shoulder, neck, swallowing
loss of dexterity in left hand
hypertonia in left formarm and left calf muscle
normal EMG

Only UMN involvement thus far according to the doctors.

 

[johnnyliverpool1]

then why mention them..leave it there...just me being a little mischivious...u ask about ms...which does cause umnsyndrome...so does many other things ..like stroke tumour spine injury ect.....they know not what causes motor neuron desease so unless ur a stone wall certainty on symptoms u aint gonna know....u need multiple mri .s....spine taps and god know what yet to even get near a diagnosed...that should take care of the next 5yrs .if your furtunate...and if ur like me they will tell u ..its summatt in the spine but we dont know wat ir is....but it could be worse news than that so i count my blessing i got away with something more devastating....so good luck to u on your journey....johnny..

 

[johnnyliverpool1]

less devastating...put me head back in the drum.....

 

[johnnyliverpool1]

scrub that above..goodnight

 

[NotKnowingSucks]

Forgot to mention I have Myoclonus as well, jerks that just come out of no where. Not all of the time but when I am resting or waking up from sleep, some during the day which are much less violent.

I guess these could be caused by klonopin I am taking or at least my body withdrawing from it. They didn't start again until my symptoms all started again in November.

 

[johnnyliverpool1]

not knowing.....clonus hyperreflexia babinski sign and spasticity r all part of the upper motor neuron syndrome...ie, something amiss in the brain and/or the spine ,,check it out on the web. its all there...i can be sensible sometimes....take care...johnno..

 

[olly]

notknowingsucks.
though hyperreflexia can be a umn sign the babinski and hoffmans are important pathological signs in diagnosing umn desease.
many people can have naturally very brisk reflexes so the babinski and hoffmans signs should be present before jumping to a umn diagnosis.
however, the signs ,presentation and severity depends on the umn damage............slow persistant damage =slow steady progression and signs.........were as an acute umn lesion can cause sudden increase or new damage depending on where it is (brain or spinal cord)including hypotonia

some of us present differently depending on where the umn damage is or to what severity.
for instance i have positive babinski,hoffmans and brisk reflexes . i had more clonus and myoclonus in the early years but more weakness now which i partly put down to being on baclofen for over a decade. i also have signs that i had an acute spinal umn lesion at one point which shows in my left leg.
others may present and progress in different ways as i have said but we all present with pathological signs of positive babinski and hoffmans.

my reason for bringing this up is that there could be something else going on.
for instance a stroke can present with onesided spasticity...........this would be the whole of one side.
were as umn desease presents differently it works its way up or down the corticalspinal tract...........it would effect one or both legs and then over several years work its way up the body or the other way round.

did they check for any signs of a stroke? contrast mri?
you should really get some other opinions because you dont have the typical presentation of umn desease.
it seems what has caused the symptoms completely down one side would stem from damage to the brain from a stroke for instance.
hopefully the neurologist you are going to see will have more answers than the neuromuscular guy.

 

[NotKnowingSucks]

Thanks Olly,

You make a lot of sense and the docs at one time thought I did have a stroke back in 2005, they actually rushed me to a stroke ward at columbia prespaterian hopital in NYC but after though rough investigation they said they didn't find any hint of what cause my symptoms. I am definitely negative hoffman, negative babinski.

I do have this pent up feeling on my left side, like the left side of my body is overly ticklish or super-sensitive and jumpy. I have pain everyday and nigt in my thoracic T3 and T4, sensitive to the touch and my doctors have not scanned my thoracic or lumber spines yet so maybe there is something they are missing. Going to primary care on Monday to see if I can get scanned there to see what those spots are causing me such pain.

How come I would lose dexterity and stamina in my left arm? Just questioning it myself. Wish me luck that Thoracic is causing my issues. having trouble breathing on the left side today, nothing major just slightly more difficult.

I just want my function back. Sick of feeling weak.

 

[TedH5]

Did they every do a MRA on you. It is similar to a MRI but they check the arteries in your brain for evidence of a stroke.