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Vonzuber

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Greetings,
I am new to the forum, but am interested in learning more about ALS/MND. I am 54, and I have had progressive leg and arm weakness for almost two years. The fasciculations and cramps in my legs and arms has been increasing. I have had extreme fatigue for a long time and seems to be increasing. When I walk, my legs will stiffen and I become fatigued needing rest. I have had an MRI about 18 months ago showing nothing. Many blood tests indicating auto immune issues, but nothing specific. The EMG indicated nerve conductivity issues and possible Upper Motor Neuron Pathology. I have been to a sleep doctor to help with sleep, but the fasciculation issue is a problem. I use a sleep aid to stay a sleep, but still fatigued during the day. My Neurologist has a wait and see attitude saying, "Don't worry, you will be alright." However, I do not feel right. Is the wait and see path the only recourse?
Thanks,
Vonzuber
 

LizT

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Sometimes wait and see is all you can do, but I would suggest pressing the issue with your Neuro and if he/she is still hesitant, then it may be time to find a new Neuro. Do you have clinical weakness?
 

Vonzuber

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oh, the Rheumatologist thought I had Vasculitis with nerve damage. Had a nerve biopsy, negative.
 

Vonzuber

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I have been to some rehab due to the weakness. There are indications of muscle atrophy in my legs
 

LizT

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Ok, so you DO have clinical weakness... I really recommend what i previously stated. Press it with your current Neuro. If that doesnt work, then go elsewhere.
 

Vonzuber

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I thought of going to another Neuro; however, I was made to feel this sense of betrayal. When I asked for my records, I was quizzed by the office staff as to why I wanted the records and who was I sending them to. Then a recommendation to see the sleep doctor. Sad to say, but I feel too tired to push the issue. But, I know I should.
 

LizT

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That isnt fair to you at all. You do not need a reason to want your medical records. They are yours and you can do with them what you wish! Some Dr.s are just offended when patients want to leave. Im guessing maybe your doc doesnt have much if any experience with ALS. So he/she wants to play the "wait and see" game. Good for the doc- no so much for you. If it is ALS, time will tell, but it may be YOUR time wasted. Try not to let them make you feel guilty. This is your life and future and if they arent giving you the care and medical attention you feel you need, by all means go elsewhere. And you DO have reason for concern.
I wish the best for you.
 

LizT

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I did reply to you, but my message was sent to moderation. as soon as one of our moderators reads it and oks it, it will be posted.
 

trfogey

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1) Nerve conduction studies are normal in ALS, if you are referring to the NCV test that is usually done at the same time as an EMG. Problems on the NCV point away from ALS and toward other issues such as nerve impingements and peripheral neuropathies.

2) Likewise, EMGs do not evaluate the UMNs in any way that I am aware of. The UMNs are in your brain and connect to the LMNs in the spinal cord. UMNs do not connect directly to the muscles or the nerves in the muscles so how would an EMG test them? You must have misunderstood that part of the EMG interpretation -- ask your neuro for clarification.

3) How you define weakness and how your neuro defines weakness are likely to be two different things. Your description of your symptoms and your neuro's findings are simply too vague for anyone here to offer you any useful advice beyond go back to your doctor or find a new doctor if you've lost confidence in your current doctor. If you want more specific advice, you'll have to provide better information -- simple as that.

4) We have a portion of this message board called the "Do I Have ALS?" forum. Members that want to help folks like you with your questions watch that forum and respond to posts placed there. You should probably put your future posts there where they are "on topic." rather than here where they aren't.

Good luck.
 

Vonzuber

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Is it ALS?

Greetings,
I am new to the forum, but am interested in learning more about ALS/MND. I am 54, and I have had progressive leg and arm weakness for almost two years. The fasciculations and cramps in my legs and arms has been increasing. I have had extreme fatigue for a long time and seems to be increasing. When I walk, my legs will stiffen and I become fatigued needing rest. I have had an MRI about 18 months ago showing nothing. Many blood tests indicating auto immune issues, but nothing specific. The EMG indicated nerve conductivity issues and possible Upper Motor Neuron Pathology. I have been to a sleep doctor to help with sleep, but the fasciculation issue is a problem. I use a sleep aid to stay a sleep, but still fatigued during the day. My Neurologist has a wait and see attitude saying, "Don't worry, you will be alright." However, I do not feel right. Is the wait and see path the only recourse?
Thanks,
Vonzuber
 

Zaphoon

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Re: Is it ALS?

"The EMG indicated nerve conductivity issues and possible Upper Motor Neuron Pathology."

The EMG registers lower motor neuron activity, not upper. Did you mean lower motor neuron pathology?
 

Vonzuber

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Re: Is it ALS?

Upper is what I recall on the summary from my doctor.
 

kmendsley

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Re: Is it ALS?

Dear Vonzuber
In regards to your previous post "New and Confused" and this one which states the EXACT same problem with a new title "Is it ALS?" get a new neuro to move things along if they are too slow for you now. You are your own advocate, and you have to fight yourself, no one else will. Also can you give us the EMG results...your summary of them are not too clear.

P.S. Please do not post the same post on a new thread with a new title. It makes people think you are trying to seek other opinions from the first ones you got, plus it is confusing to keep track of the responses you have received and your progress...whatever it may be when you are on multiple threads...stick to one please....finally, it doesn't make the moderators too happy. Thanks :)
 

Vonzuber

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Re: Is it ALS?

ok, Thanks for the update and insight.

I was following a suggestion and was not clear on it. I apologize for any confusion.

I am just very frustrated with where I am and how I feel. I will try to get a copy of the EMG.
 
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