Scared my husband may have ALS...

[joeandmariaforever]

My husband has been ill since June with what began as dizziness, unsteady gaid and weakness in his left leg. The left leg then began to become hypersensitive and twich at night. This spread recently to his right arm and then his left. His right arm now twiches all day.
His EMG states this...

"Monopolar needle examination of the left triceps demonstrated +2 positive sharp waves with a slightly reduced pattern of motor unit recruitment. The left biceps and brachioradialis demonstrated +2 positive sharp waves with +1 fibrillation potentials and a reduced pattern of motor unit recruitment. The left deltoid demonstrated +1 sharp waves with a reduced pattern of motor unit recruitment. The right tibialis anterior demonstrated +2 positive sharp waves and +1 fibrillation with a reduced pattern of motor unit recruitment. The left tibialis anterior demonstrated +1 positive sharp waves with a slightly reduced pattern of motor unit recruitment. The right triceps demonstrated +1 positive sharp waves with a slightly reduced pattern of motor unit recruitment. The right biceps and brachioradialis demonstrated +2 positive sharp waves and +2 fibrillation potentials with slightly reduced pattern of motor unit recruitment. The right and left first dorsal interosseous muscles as well as the right deltoid muscle and the right and left medial gastrocnemius and vastus lateralis muscles was without evidence of active denervation and the pattern of motor unit recruitment was normal."

His MRIs have been normal, but his rotating chair test showed that he veered to the right, which is what happens when he walks. He also gets much worse in the heat or humidity.

We are desperate to know what this means. Can anyone help please? Could this be ALS or just MMN?

Maria

 

[crystalkk]

Marie,


Welcome to the forum, sorry that you have to be here.

Do you know how his reflexes are? (brisk, normal, reduced)

What did the nuero say? Was there any kind of conclusion with the emg report and did he have a NVC
before the EMG part of the test?

 

[joeandmariaforever]

His reflexes are normal. Once in the past they called them exhaggerated in the left knee, but not since. Here is the EMG impression...

"THis EMG is abnormal due to the presence of multifocal denervation in both arms and both legs encompassing multiple myotomes. This may be indicative of bilateral cervical and lumbrosacral polyradiculopathy and such possibilities should be excluded on the basis of appropriate neuroimaging studies of the cervical and lumbosacral spines. The possbility of a motor neuropathy or motor neuronopathy cannot be definitely excluded on the basis of these electrophysiologic data. Clinical correlation is strongly advised. Radiographic correlation, as described above, is also strongly advised."

 

[joeandmariaforever]

Also, here is the NCV part of the test. I have no idea if this is normal or not...

"The left sural sensory nerve action potential amplitude was 8.1 microvolts with a peak latency of 3.8 milliseconds and a conduction velocity of 49.2 meters per second. The right sural sensory nerve action potential amplitude was 6 microvolts with a peak latentcy of 3.55 milliseconds and a conduction velocity of 49.1 meters per second. The right tibial compound muscle action potential amplitude was 5.6 millivolts with a distal latency of 4.75 milliseconds and a conduction velocity of 52 meters per second. The left tibial compound muscle action potential amplitude 6.2 millivolts with a distal latency of 4.3 milliseconds and a conduction belocity of 47.6 meters per second. The right ulnar compound muscle action potential amplitude was 8.2 millivolts with a distal latency of 3.05 milliseconds and a conduction velocity of 57.6 meters per second below the ulnar groove, and 61.2 meters per second across the ulnar groove. The right ulnar, palmar mixed nerve action potential amplitude was 9.1 microvolts with a peak latency of 2.05 milliseconds and a conduction velocity of 51.6 meters per second. The left ulnar compound muscle action potential amplitude was 8 millivolts with a distal latency of 2.85 milliseconds and a conduction velocity of 56.8 meters per second below the ulnar groove and 56.6 meters per second across the ulnar groove."

Is this normal and if so, is that a good thing or a bad thing?

 

[CindyM]

Hi Maria- sounds like Joe is lucky to have you! We aren't doctors around here but some members have done a lot of research and we do have others in the medical field. You may get some opinions, yet.

What is the next step for Joe? Did they set a follow-up appointment ar will his GP go over these results with him? (Glad you joined us, BTW.) Cindy

 

[joeandmariaforever]

Hi Cindy,
Thanks for the encouragement. Does anyone here know much about EMG tests? I thought maybe it could be MMN since he does not have any reflex issues and has pain, tingling/numbness in arms and left leg with hypersensitivity in the left leg.

I guess I am just scared and need to know more. He is going to Mayo next week, but in the meantime I feel like I need some answers. We have six children and we both work. He is the love of my life and I just can't imagine life without him.

Sorry to be so down, I just need to know something...

 

[crystalkk]

Maria,

I pm'ed Wright and asked him to take a look when he gets a chance. He is not a doctor but is very helpful.

I know how hard this is, I hope the mayo will be able to give you some answers next week of something treatable.

please hang in there,

 

[wright]

Hello Marie

I apologize for not seeing this thread earlier (Crystal PM'd me and asked me to look at it).

The EMG is showing that your husband has denervation (nerves losing contact with muscles) of multiple areas of his body. This was indicated by the presence of positive sharp waves and fibrillations (those are indicative of spontaneous electrical activity that muscles posses when they lose contact with a nerve). What the doctors are going to do is try to figure out why he has that denervation.

It appears that they are going to be doing MRI's of his entire spinal column given that he has nerve damage in his upper and lower limbs to see if he has multiple herniated discs.

It can definitely be MMN as you ask and MMN is treatable.

Given that his reflexes are normal, it is not ALS but could be a variant of ALS called PMA. Typically PMA progresses slower than ALS.

It could also be some other type of autoimmune syndrome (other than MMN) that is causing the nerves to lose contact with the muscles.

The nerve conduction study appears to be normal, which could point away from disc issues but not necessarily, which is why they are still going to do those MRI's.

Right now it is too early to tell what is happening. Remain hopeful that it is something treatable and of course, lean on us because we are here to help you through this.

I wish you and your family the best during this time.

 

[joeandmariaforever]

Thank you for your response, Wright. My husband called me today at work and was quite upset because he tested himself for Babinski and it was positive in both feet. No one has ever mentioned this to us but we don't know if he has ever had a positive response before. He was certain that his toes flaired out and up today multiple times. He also complains of numbness in his hands (especially at night) and hypersensitivity in his left leg (you can't even touch it when it's flaring up).

The idea of a positive reflex conserned me because up to this point I could not find evidence of Upper motor neuron involvment in him. However, please correct me if I am mistaken, but I thought that numbness/tingling, etc was not typical of motor neuron disease but more like MS. His MRIs this summer had no lesions whatsoever and he feels worse in heat/humidity as well.

Any clues?

Maria

 

[KANSASTOM]

Wright

The positve sharp waves and fibrillation potentials when they are widespread is lower motor neuron involvement the only answer. What else could cause this, I also have these PSW's and Fib's widespread. The way I see this and correct me if I am wrong, is anytime the muscle loses it's signal these PSW's and Fib's would exist including neuropathies.

 

[wright]

Hello again Marie

I don't think anyone can reliably test themselves for a positive Babinski, so he shouldn't put too much stock in what he saw.

Numbness and tingling typically point away from motor neuron disease. There is a very small percentage of people with sensory symptoms in motor neuron disease but the presence of such symptoms typically takes the diagnosis elsewhere. His symptoms could also be unrelated to his motor deficits but given that they all started at the same time, let's hope that it is a good sign.

The sensory symptoms he is experiencing is probably why they are going to perform the MRI's of his entire spinal column, because those symptoms are definitely a part of radiculopathies (i.e. nerve impingements of spinal nerves).

Does your husband have any type of pain? When you say his leg is hypersensitive: what do you mean by that? You also say he has flare-ups: what do you mean by that? Do you mean that those sensory symptoms are not constant? Does he have muscle twitches? Does he have any muscle atrophy?


Tom

Yes, widespread denervation can be due to a neuropathy (e.g. a polyneuropathy, polyradiculopathy, a multifocal mononeuritis). An example of such a disease would be MMN (multifocal motor neuropathy). Most neuropathies are treatable and non-life threatening.

 

[joeandmariaforever]

Wright,

Joe's symptoms are constant but at times worse than others. The numbness/tingling is not always there and there is often (but not always) pain in the left leg and right arm. I guess by flare-ups I mean when the symptoms are so bad that he can't rest or stay still without constant discomfort.
Sometimes he says that moving around helps the numbness, sometimes it does not. Also, the hypersensitivity is the way he describes it when his left leg hurts and becomes so sensitive to touch that it is painful to touch him there at all. His leg gives out often on stairs and he gets dizzy and unsteady quite often as well.

Yes, his left leg and right arm twitch. The left leg mostly at night. The right arm used to be only at night and now is pretty much all day long.
No atrophy or changes in arm strength as of yet. Left leg is weaker than it used to be, but no atrophy yet there either.

Maria

 

[wright]

When was his EMG done and how long after the onset of symptoms? How did he first notice his symptoms? How long have they taken to progress?

It sounds as if he has neuropathic pain (e.g. burning and wrenching): is that true? Does the pain feel like it's coming from his skin or his muscles or his bones?

Does he have any cramping-type pain?

Does his leg "feel" weak to him or can he simply not do the things he used to be able to do, which indicates the weakness? Does the increase in pain cause his leg to feel weaker?

How old is he?

Sorry about all of the questions but I'm trying to get a full picture of things.

 

[joeandmariaforever]

Hi Wright,

Joe's EMG was done last week, and the doctor told us yesterday that his reflexes were normal at that time as well.
The leg symptoms began in June and the arm symptoms around a month ago.
They have progressed since. They also get much worse in heat and humidity. He does experience cramping in the left leg and it feels weak and heavy at times. The pain he describes is a painful tingling sensation from the lower back down the left leg. He feels it in the muscles and it is often accompanied by a hypersensitivity to touch and temperature in the skin on his leg. I believe that the increase in pain and tingling makes his leg feel weaker too. His arms are not weak, but the right arm twitches and the fingers and hands in both arms sometimes become numb at night.
These symptoms keep him from sleeping and he gets very little rest (me too).

He is 45 years old. As of yesterday he is very hoarse too. He had hoarseness earlier in the summer but this is the first time he has had this symptom since.

 

[Jamiet]

Maria,

Hello, i'm Jamie. I feel inclined to comment, i've been around this forum for some time. I've pretty much been thru the ringer and back and like Wright and a few of the others here have seen many come and go (in a good way)...

I certainly feel for you all, your hubby is young and has alot of life left. To be frankly honest from my point of view, something is wrong and it's not going to be easy, whatever it is. PSW's & FIB's are not good, but, can be caused by something treatable. I can say, i haven't seen too many ALS patients here have what your hubby describes, particularly with the dizzyness, numbness, tingling and esp. the hypersensitivity. With the NORMAL reflexes is probably his BEST symptom (or non symptom). It's almost a necessity for ALS diagnosed as far as what i've seen.

Me, like Cindy, Wright, AL, etc have been consulation to a many here and most of the time, we are correct in what we see.

I can tell you, my gut feeling on this, it's a bad neuropathy, probably treatable in some form. Just my gut from seeing the sensory issues.

If i were you, i would demand a muscle biopsy......get straight to the root of the problem. It's going to be painful, but it will tell the story...i'm about sure of it, although we've all seen here, it's never 100% certain in medicine.

Well, all i can say, is he's still alive.... When i got sick, i was ready to write my ulogy.... I wasn't supposed to be here another year.... That...was Sept. 06'. Well, i'm here...living, still have whatever i had..... living with it. We've learned to live with what i have and make the best of it. I know times are scared and your hubby is going to need you more than ever right now. It's certainly not fun and the waiting game is HORRIBLE to say the least.

Perhaps focus on not focusing (lol) on every little symptom that crops up, he will be looking for new things and trust us..... you find all kinda crazy things when you start examining.. I was hoarse and loosing my voice by Nov 06, telling my wife i wouldn't be able to speak by Jan 07.... I can yell pretty loudly today (just ask the kids..lol).

well, i'm trying to give you a little better outlook, 9 of 10 times it's treatable!

hang in there and give our regards to your husband. We know where he is and we're all praying for good results.

Rgds,

Jamie