Do I have ALS?

[ariz4me]

It all started about 2 years ago when I noticed that I could not lift my left arm when doing bicep curls. I have had arm weakness in the left arm ever since. I can lift things with my left arm but not just from a curl position. My arm also gives out such as when I am carrying a load of clothes to the washer or heavy books in my arm. I can raise my arms with weight above my head. I have not lost fine motor control and can hold a two pound weight in my hand and move it around. I have had pain in my neck that radiates down my left shoulder. It's also under my shoulder blade. I went to the orthopedic doc this spring because I felt it was a shoulder problem. He x-rayed the shoulder and said I had signs of shoulder impigment. He also said that he noticed some weakness and slight atrophy in my forearm and hand. He requested an MRI and I go see a neurologist. I went to the neurologist who did an EMG of my right and left arm as well as under my chin. I had misfirings of the neurons in my left arm when the muscle was at rest. The right arm was fine. The electrode under my chin picked up misfiring. From all of this, he concluded that I had a neuron motor disorder and referred me to the ALS clinic. He also did a gene test that indicated I have the ANG gene. I had been seeing a chiropractor prior to the results of the EMG. She put me in cervical traction and I started to feel as if my arm was getting stronger. How I could tell was that I was carrying lots of grocery bags on that arm whereas before that was impossible. I stopped going for 1 month and the arm is weak again. The results of the MRI showed spinal stenosis beginning at the Cl-3 to the T-1 region with the severity of the stenosis changing from each vertebrae. It also showed a slight touching of the stenosis on the left side of the spinal cord.

At the clinic, the doctor indicated that she could not rule out ALS due to the fact that I have a "severely weak muscle in my left arm." She checked my tongue and indicated that she saw no fasciculations. She also said that she did not notice any weakness in the rest of my body but she wants to repeat the EMG on my left arm. She is also going to do my leg and face. I asked her if the fact that this has been going on for 2 years is a sign that it is not ALS. She indicated that it does not. My husband asked if the EMG results could be the result of the spinal stenosis that is pretty bad in my spine. She said that it could however, she has seen ALS patients with t he same spinal issues with arms less weak than mine. Is the EMG the sole determiner for ALS if it's abnormal and a diagnosis such as this is given? Should I see a consultation with a spinal doctor?

I need help sorting all of this out. I'm scared to death - with all of this. Can you receive irregular EMGs with spinal stenosis that can be interpreted as a neuron motor disease.

Thanks for any help and encouragement you can give me with this!

 

[Zaphoon]

ariz4me,

I understand your fears. Spine and shoulder problems can cause all sorts of weakness. At this juncture, it would be beneficial to realize that a conclusion of ALS usually only comes after a whole host of things gets ruled out first.

I have frozen shoulder syndrome on top of having PLS but the frozen shoulders are a seperate issue that caused arm weakness, shoulder muscle atrophy and pain. It is an ongoing problem.

I'm no physician but my guess would be your spinal stenosis is playing a major role in your problems as is your shoulder impingement. For now, I'd put ALS out of mind as much as possible.

Zaphoon

 

[ariz4me]

Thank you. The fact that they will not rule it out is scaring me so much. Also, the neurologist's conclusion of a neuron motor disorder has me scared to death. All the literature I've read on this subject points towards ALS. The doc is going to do an emg on my paraspinal muscles as well as my face. I am so afraid that she will come back with something.

Thanks for your encouragement.

 

[Zaphoon]

Sometimes it takes a while for them to rule ALS out of the picture. Most neuros won't even breach the subject of ALS (or any other incurable disease) until they are relatively certain it may be what they are looking at.

I've had two clean EMG's and I was told after both of them that I did not have ALS but they couldn't completely rule it out - yet. That is part of having PLS - its PLS until a given amount of time passes and no lmn comes into the picture.

To comfort you a bit, let me ask what they have ruled out. Have the doctors ruled out MS, Lupus, Myasthenia Gravis, Muscular Dystrophies, Parkinsons, neuropathies (by the dozens), HSP, hodgekins...

The list goes on and on and on. There are probably many, many other things that haven't been ruled besides ALS at this point. Please take heart in this.

How about this:

It can always be something else until it can't be anything else but ALS.

Zaphoon

 

[crystalkk]

Hopefully its the stenosis causing your problems. What is the ANG gene? I am from Philadelphia, which ALS specialist did your nuero send you to. Good luck with your next EMG.