Old 08-15-2016, 07:43 AM #1
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Default Please tell me it's something else

Hi everyone. I would greatly appreciate your advice. Four months ago out of the blue, the index finger on my dominant hand started moving On its own. It started pulling outward towards my thumb. Only happened three times the first day and I wasn't very concerned. By the weekend I was having hundreds of these involuntary movements a day. My middle finger was also stuff and I also had periods of uncontrollable laughing and crying.
I went to my Dr who did what I felt was a very odd test because she didn't even look at my finger. She felt the muscles on my arms and looked in my mouth, and told me she wanted me to see a neurologist. She was on the phone with him before I even made it out of her office. The paper she gave me said "dx UMN syndrome and hand spasticity".
It took almost two months but I finally got to see the neurologist. He wanted to run a bunch of tests for things like lupus, Lyme, cancer, ms, vitamin deficiency and a few others. All tests came back good except for a 5mm pineal cyst on MRI that he says is not causing my symptoms. He wants to do an EMG and says ALS is a possibility.
since my initial symptoms I've had all over frequent twitching of muscles, exhaustion (I can't do things i used to, my body just isn't willing), stiffness and some cognitive issues.
I don't think this is ALS. It's too rare. It's got to be something else. But being told you are being tested for a fatal disease is so overwhelmingly terrifying. Please give me your opinions.
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Old 08-15-2016, 09:10 AM #2
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Default Re: Please tell me it's something else

Also, he gave me muscle relaxers to see if they helped with the twitching. I thought he said that if they didn't work it meant it was just a muscle problem. I was super relieved that it was just a muscle problem until I realized I misunderstood him.
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Old 08-15-2016, 09:40 AM #3
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Default Re: Please tell me it's something else

Hi. We can't tell you what it is but at this point we can say there are a lot of possibilities so try not to panic.

You do not say what the neurologist found on clinical exam. If MND is not ruled out after the EMG please go see a neuromuscular specialist. We have had people actually diagnosed by general neurologists who had their diagnosis overturned when they saw the neuromuscular specialist

When is the emg?
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Old 08-15-2016, 09:56 AM #4
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Default Re: Please tell me it's something else

Thank you so much for responding! You mean the neurologists physical exam that he did in the office? He didn't say much except about wanting to send me for testing. My EMG isn't until the 19th of September but I'm on the cancellation list so there's a chance I could get in earlier.
I see a lot of people are told its BFS. Is that an option for me at this point? Neither my neurologist or primary care mentioned it.
I will look into neuromuscular, thank you.
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Old 08-15-2016, 02:02 PM #5
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Default Re: Please tell me it's something else

MrsRAD: Waay, waay too early to be worried about rare fatal diseases. Lots of possibilities, including just being unconsciously stressed out by a recent change in your life. Let the docs do their things.
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Old 08-15-2016, 02:08 PM #6
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Default Re: Please tell me it's something else

Thanks Mike! I sincerely hope so. However, there have been no recent changes. No stressors. My life is pretty awesome. One day I woke up and just started going downhill.
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Old 08-15-2016, 03:39 PM #7
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Default Re: Please tell me it's something else

Wait for that EMG and get it as soon as you can. An EMG cannot rule ALS as a diagnosis all by itsel, but it sure can rule it OUT. I personally have not t heard of involuntary finger movement as a presenting symptom, and twitching is just too general a symptom to grab onto ALS.

Weakness and failure to function are not notes in your story. I have lots of hope for a good outcome for you.
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Old 08-15-2016, 07:08 PM #8
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Default Re: Please tell me it's something else

Thank you very much. I hope that you are right.
I don't have loss of function in any body part. Everything seems to work correctly but I have been experiencing extreme fatigue. My body feels drained and I am unable to do things that I need to. But it's frustrating because it's not because any part of my body seems to be broken, I just don't have the energy. This is not normal at all for me and i can't explain it well enough that it doesn't sound like I'm just tired. It's not just normal fatigue though.
My neurologist called today to ask about the meds and when I told him they hadn't worked he put me on a new one, zanaflex. He also said he wants to do more blood work to rule out myopathy and myanethesia gravis, though he doesn't think I have that he just wants to be cautious.
I'm so glad to hear that people who have ALS don't think that it's likely to be ALS. Thank you all for putting my mind at ease. I can't wait for all this testing to be over and hopefully begin treatment for whatever it is that's causing these issues.
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Old 08-16-2016, 05:12 PM #9
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Default Re: Please tell me it's something else

Quick question, and I apologize for taking up anymore of your time.
I have developed another abnormal symptom today. When I am holding something in my hand, my hand trembles and I have to put whatever it is down so I don't drop it. Is this a symptom that would help rule out ALS further?
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Old 08-16-2016, 07:24 PM #10
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Default Re: Please tell me it's something else

With ALS, the story seems to be more "It was in my hand and I just dropped it", not tremors that make you feel like you will drop something.

As the chant goes here - ALS is failing, not feeling.

The EMG I think will clear up a lot of doubt for you. One thing, if you are told the EMG is good, don't let yourself get caught up in further worries on ALS. Trust the results, so many seem not to do that.
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Old 08-16-2016, 09:10 PM #11
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Default Re: Please tell me it's something else

Thank you!
I trust my neurologist and I will take him at his word if he says it's not ALS. I'll be more than happy to know I'm not dying. But I'll never forget the time spent in limbo after my neurologist said it could be ALS and how scary that was and I'll be donating in the hopes that one day no one has to suffer with it.
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Old 08-22-2016, 04:12 PM #12
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Default Re: Please tell me it's something else

I apologize, I thought it said do not make a new thread if your thread had already been closed before.
To update here: I got a lucky break and my EMG is tomorrow morning instead of September 19th. I'm glad it got moved but now I'm also terrified about what it might show. I'll let you guys know tomorrow, wish me luck!
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Old 08-22-2016, 07:05 PM #13
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Good luck MrsRAD!
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Old 08-22-2016, 09:10 PM #14
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Default Re: Please tell me it's something else

Said a prayer for you.
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Old 08-22-2016, 09:15 PM #15
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Default Re: Please tell me it's something else

Good luck! Thinking of you.
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