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glennajo

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Hi all - first let me say I am impressed by the compasison and helpfulness all of you show on this website. I have not yet been diagnosed, but am terrified. My symptoms started with weakness in the right hand, especially the ring finger and pinkie. I am a legal secretary and typing is becoming extremely difficult. Had the full range of MRIS, all normal. Had an EMG and the results were abnormal with respect to the motor AND sensory nerve. The neuro said the problem seemed to be coming from the brachial plexus region. The neuro also said it could be early stage ALS. My PT, and chiropractor believe I have thoracic outlet syndrome. Both ALS and TOS are diagnosed by process of elimination. I also have fasciculations in the hand, and now in both feet. I haven't really noticed weakness anywhere else, although, as you all know, the mind can make you think you are weak when you really are not. I can still climb stairs, no stumbling, no speech problems, or drooling. I am also hyperreflexic, but only in the right arm. I have exhausted all PT allowed by my insurance company and my first appt. with a psychiatrist is tomorrow. If the ALS doesn't get me, the stress will. I guess my question is.............if the sensory nerve is affected, could ALS still be possible? I have another EMG scheduled in September. I am terrified. Also, I sleep on my side,and when I yawn, (but ONLY when I yawn), in while on my side, my fingers curl. I have also gone to a cardiothoracic surgeon who says the symptoms seem consistent with TOS, but wants me to have more physical therapy, which I cannot get. Any input from anybody?
 

Sammantha

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If that is what your neuro came out and said i would kick his a--. I find it hard to believe a neuro would do an EMG after seeing you once or twice and say, it probably is your brachial plexus or early ALS. Either it is definetly ALS and they want you to know it without diagnosing it first or they are insane and uncaring. So many people on this forum go through a whole range of tests and watchful waiting that sometimes can lasts years. I had muscle wasting and ALS was not in my vocabulary and not in my docs at the time. To be this early into it and think it is ALS is awful. What your neuro said, is the equivalent to saying, i think that lump is a pimple or maybe a malignant tumor? If this is what your neuro said, i pray to god you are not the worrying type! I am and i am so glad that i was not under watch for ALS until it became the very last thing in a long line of possibilities. Good luck and i hope it is something that can be fixed. Sam
 

wright

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The fact that you have sensory nerve issues should definitely point your docs in the direction of a brachial plexus injury or possibly thoracic outlet syndrome (TOS is pretty rare, though). There is a very small percentage . . . did you hear me . . . very small percentage of PALS that present with sensory nerve problems . . . so small . . . that it is generally accepted that sensory nerve issues are not part of ALS. The odds are definitely in favor of you having something that is treatable.

As far as your hyperreflexic right arm: that can be caused by many things other than upper motor neuron dysfunction or death.

The second EMG will most likely shed some light on your condition, so please try to relax in the meantime.

A question for you: are you feeling any type of pain or other sensory symptoms?
 

glennajo

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new and terrified

My symptoms are weird. I sleep on my right side - when I yawn, my right hand curls up. Typing and writing are difficult with the right hand. I have a decent grip but can't press the button on the shaving cream. I feel that I have weakness in my legs, but the mind can make you crazy. Am having fasiculations in both feet, right bicep and right shoulder. The hyperreflexia was positive in my knees also. No pain to speak of....other than the tremendous emotional pain associated with the waiting. Am going for follow up visit today, and they are moving up the date for the 2nd EMG because the emotional roller coaster is more than I can bear. My neuro said he thought it could be coming from the brachial plexus, but MRI of the brachial plexus was negative. Thanks for the words of encouragement - they are very much needed.
 

crystalkk

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Good luck with your appointment....Keep us posted.
 

awieleba

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Good luck with the appt and keep us posted.

It is a real scary time, I understand and we are here for you!

april
 

brendapals

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Hello everyone-

I didn't want to start a new thread, so I stopped here! A friend of mine called me last night to let me know he had seen the article in our local newspaper about my diagnosis. He also wanted to let me know his father was diagnosed on 8/28/08!

His dad is 72, retired, and has experienced weakness in his legs for about a year. I told them about this forum, so hopefully they will join soon. We share the same neuro at IU Medical Center. I hope to get together with them next week and share info about ALS association, MDA association, and anything else I can drag out of my "portable ALS library"- haha-that's what my kids call the back of my car!

I mainly wanted to let everyone know that I feel pretty humble today that someone contacted ME for information-I'm well on my way to spreading ALS awareness all over Kentucky!
And as always, keep us in your prayers,
I'm praying for a miracle!
Keep the faith,
brenda
 

BethU

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Brenda, way to go. So sorry about your friend's dad. Hope he joins the forum soon!

You are doing PALS an enormous service in getting the word out.

BethU
 

brendapals

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thanks Beth,

It is just amazing to me how easy it is to talk about it now-I think I've made about 3 weeks without crying!

Seriously though, I think the fact that I went back to nursing school at such an odd age-graduated when I was 40-has made me realize that education is everything. I used to always say "Knowledge is Power" when I went to college the first time, well , now that I am back in school for the last 2 classes of my bachelors, I have to keep telling myself that or I will slack off on the homework!

I have a quiz due tomorrow, I've done about half of it so far, so now it's time to finish!
talk soon,
brenda
 

BethU

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[QUOTE=brendapals;52860]I have a quiz due tomorrow, I've done about half of it so far, so now it's time to finish! talk soon, brenda[/QUOTE]

Good luck on the quiz! I started college at age 48, and graduated at 52, and it was one of the best things I ever did! I found the work was so much easier than when I had tried college in my teens ... you learn so much just by living. I'm sure this is doubly true for you in nursing.

Take care,
BethU
 
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