Old 07-16-2012, 08:54 PM #1
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Default weakness in body/weakness in neck/mouth

I am a 59 year old male. I have weakness in whole body, twitches all the time and weakness in neck and mouth and tongue and face area. Have been seen by one neurologist who I liked and i had thought I wouldn't go further. Also hosp in May. EMG was clean he said, MRI's of brain and spine, MRA, tons of blood work, EEG, thorough neuro exam. I trust neuro but he said he thought it was all anxiety-maybe so. But he said he would give me another referral to an ALS/neuro muscular specialist in St. Louis at Wash U. Going 07/26/12 for this appointment. I also am going to Portland, OR with a friend for 9 days prior to the appmt. Hoping I can make this trip ok also. Top ALS/neuro specialist the website says is who my appmt is with. I have feared ALS from the beginning in Feb. I have had mild symptoms for "years" but nothing this severe. I feel so weak all over, so very weak. I still drive and type and eat but I can tell things are NOT right with my body. Neuro locally says NO ALS of which I am thankful. But even my fingers are weak. Any thoughts. I am a church pianist, mainly organist. I am still playing the instrument but it is with much difficulty each Sunday. I have a year old grandson that I would like to be involved with some more than I am. Oh, and my muscles feel so "tired" after use. My body feels tired so much of the time also. I feel best (if you want to call it that) when I do nothing! Sad to say. I need to try and accept the 2nd referral diagnosis if at all possible, since I have met my ins. deductible for the year. My sister doesn't know why I cannot accept the initial diagnosis of nothing wrong.
My local GP said he thought the only thing that they might do in SL would be to do a muscle biopsy. Any thoughts?
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Old 07-16-2012, 09:42 PM #2
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Default Re: weakness in body/weakness in neck/mouth

I'm sorry you are having such difficulties. If your doc suggested anxiety, did he/she suggest a referral to a mental h ealth profess ional?
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Old 07-17-2012, 08:36 AM #3
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Default Re: weakness in body/weakness in neck/mouth

Yes I am seeing a mental health counselor, thank you for the suggestion. I am just wondering if people here think my problems could be related to ALS. I will get my second opinion soon and can go from there. I will try my best to trust my doctor. Thank you!
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Old 07-17-2012, 11:05 AM #4
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Default Re: weakness in body/weakness in neck/mouth

Typically ALS weakens a part of the body and then marches to adjacent areas. That is not what is happening to you; you are having weakness in a global manner but you are still functional. That is not how ALS works. It actually sounds like you have muscle fatigue as opposed to muscle weakness. Furthermore, your EMG was clean. If you truly have muscle weakness and it was due to ALS, then there is absolutely no way you would have a clean EMG.

Certainly it sounds like something is happening to you but it sure doesn't sound like ALS to me and it doesn't sound life-threatening. Do your best to enjoy your time in Oregon and then be optimistic that the neuro at Wash U (one of the best institutions in the world, by the way) will determine what is happening to you.
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Old 07-17-2012, 11:38 AM #5
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Default Re: weakness in body/weakness in neck/mouth

This is a scary time for you .But ALS doesn't present with total weakness.
Wait for your appointment with the ALS specialist who will reassure you .


Good luck

Pat
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Old 07-17-2012, 12:11 PM #6
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Default Re: weakness in body/weakness in neck/mouth

As to the ALS question, as others have said, likely NOT. Still, that doesn't mean something isn't going on. Generalized muscle fatigue can have a lot of causes.

Have they ruled out MG? How old are you? Have they run complete blood panels for the normal suspects?

As Wright said, EMG negative is a very good sign that ALS isn't the concern. He'd know--he's an expert in the area of EMG.

Would I ignore it and move on? NO. Something may be going on--and I'd search for answers--but start with your GP and see if he can order routine labs to rule out those issues. If there is any pain associated with it--it could be something like Fibromyalgia.

Muscle fatigue just sucks. Been there, done that. I'm guessing that since you have a grandchild, you're at least in your 40s? Could this just be age related? Was onset slow or all at once?

The thing that can cause generalized muscle fatigue that is better after rest is MG.
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Old 07-17-2012, 12:22 PM #7
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Default Re: weakness in body/weakness in neck/mouth

THANK YOU both Patricia and Wright (I believe I got those names right). I appreciate both your comments to me. I don't believe it is life threatening either but it is scary of course. I live alone (widowed) so just not sure about things. I hope to get some answers with the ALS specialist also. GLAD to know Wash U is so good, I had heard that also! THANKS to both again!
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Old 07-17-2012, 09:36 PM #8
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Default Re: weakness in body/weakness in neck/mouth

I am 59 years old. It seems to be more muscle weakness everywhere (to me) but also fatigue is great after using muscles. ALSO, mouth and tongue areas are weak it seems. I have been tested for MG they say, negative also. MANY blood tests done in April and again in May. Don't know whether neuromuscular specialist (ALSO ALS specialist) at Wash U will order more blood test(s), muscle biopsy, etc. done. Will take ALL reports, some have been faxed. Question I would ask others. Do you think I need to ask for more intense EMG (mine was done only on two legs) and also if I need to consider asking for a spinal tap? THANKS to all for your replies!
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Old 07-17-2012, 11:40 PM #9
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Default Re: weakness in body/weakness in neck/mouth

I know you said that MG was ruled out for you, but it can be tricky to diagnose.
Simple blood tests are not adequate. More in depth tests that would help you learn more, are the repetitive stim NCV (nerve conduction velocity) It will show more clearly than any other test (that I'm aware of) if your weakness, perceived or clinical, is due to a muscle fatiguing. Also a single fiber EMG is needed. Both of these tests would be done at a teaching type hospital, and Washington U would certainly be a place equipped for these types of tests.

There are so many causes to be considered, you could have had an event, such as a viral infection that has caused this, it could be autoimmune, the list truly is long. I'm sure your GP meant well when he said that most likely it would just be a muscle biopsy, but, if you haven't had the above mentioned tests, and haven't had a spinal tap/lumbar puncture, then, yes, be prepared for more tests, and hopefully some sort of clarity as far as whats going on.

Try not to worry, and the best of luck to you. Please let us know what you find out.
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Old 07-18-2012, 05:56 AM #10
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Default Re: weakness in body/weakness in neck/mouth

THANK YOU Rose, I appreciate your response and will let you all know here when I know more down the line, or at least what my consult on 07/26/12 says. And then addl. tests.
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