Old 09-11-2017, 09:09 AM #1 (permalink)
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Default Terrified; please help!

Hi everyone,

I'll try to be brief as I am very upset right now and my wording will probably be jumbled (also, not native English speaker).

So, I'm 25, female and about 2-3 weeks ago, I started noticing muscle twitches in my right calf. Eventually, I would notice them somewhere else but the calf area has stayed constant, which absolutely terrifies me. I also thought I noticed atrophy in that calf, but neuro said she doesn't see it.

Neuro exam: went today to see neuro despite being terrified (I didn't sleep last night, because I've been reading about ALS and I'm convinced I have it). She asked me what was wrong, I told her, she looked at my legs, didn't notice any atrophy. She also tried to "induce" my twitches and it didn't work (not sure why, they are constant - some are felt violently, some are seen). However, the neuro exam was not normal at all and when I asked her do I have the symptoms of ALS, she said "not right now". By that point, I'm about ready to start crying. My reflexes are not normal (she wrote "no pathological reflexes, but stomach hypoflexia, no Babinski, brisk reflexes with slight asymmetry; fasculations not seen; no atrophy").

So, she says that she can't diagnose me with anything right now and is sending me for an EMG test. I tried asking a few times what she thought this is and she kept saying "I don't know, we have to see the EMG report".

Тhe EMG will look for ALS, it's written.

Please someone help me, does this sound like ALS? I'm terrified and not sure what to do anymore! I'm going to the EMG but I'm so scared!
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Old 09-11-2017, 09:34 AM #2 (permalink)
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Default Re: Terrified; please help!

Hi Meggie,
Your post is written well and your English is better than most of us here in the US!
You probably read all the stickies and know that it isn't likely you have ALS. There are so many other things that are on the table I won't even mention them.
Stress and caffeine will make the twitches worse. Please let us know what your EMG shows. I bet it will rule ALS out.
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Old 09-11-2017, 09:49 AM #3 (permalink)
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Default Re: Terrified; please help!

Thank you for your quick response, Kim! I hope your answer will at least give me some peace of mind to sleep tonight...

The thing that scared me is that she seemed to think this was a real possibility, which I would assume with my reflexes is true. I'll post the EMG when I have it, hoping it's something else...

Thank you again for taking the time to respond!
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Old 09-11-2017, 12:18 PM #4 (permalink)
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Default Re: Terrified; please help!

Meggie,
A "real" possibility is just possible enough that they want to do an EMG to rule it out. That doesn't mean it's very probable. There are great odds in your favor. Try not to worry.

Best,
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Old 09-12-2017, 06:38 AM #5 (permalink)
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Default Re: Terrified; please help!

Hi everyone,

I got my EMG results today - the doctor performing it said she sees nothing that she would consider pointing to ALS (no twitches, no denervation or fibrillations) and she tested both my legs and one arm. She did say the EMG shows I have a spinal issue, which is probably causing me these problems when she tested the calf that's bothering me, so I am glad that at least there is some explanation to my symptoms.

I will follow up with my neurologist to see what we can do about the issue but a huge weight has been lifted from my shoulders that there is nothing on the EMG suggesting ALS (the doctor did say she understood why I was worried considering the symptoms and the slightly abnormal neuro exam, so I didn't feel like a complete hypochondriac even though I was crying throughout the whole thing).

Thank you, Kim and Laurie, for taking the time to talk to me, it really helped me during these horrendous hours/days of worrying! I wish you both and everyone on this forum the best, you're awesome for taking the time to talk to people who are worried.

Hopefully my story can be helpful to someone experiencing these symptoms and worrying that it's surely ALS. :)
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Old 09-12-2017, 08:41 AM #6 (permalink)
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Default Re: Terrified; please help!

I'm so glad to hear that, Meggie! I'm sure it is a huge weight off your shoulders.

Btw, your writing skills in English are excellent; much better than some North Americans.

Take good care and sleep well tonight.
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Old 09-12-2017, 10:52 AM #7 (permalink)
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Default Re: Terrified; please help!

Thank you for the compliments about my English, guys. :)

I'll be catching up on sleep tonight for sure.

Take care and I appreciate very much everyone's kind reassurances during this stressful time in my life.

Best,
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Old 09-13-2017, 08:20 AM #8 (permalink)
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Default Re: Terrified; please help!

Sorry to be posting again but I've been reading up and I'm scared again.

I read that if the disease starts in upper motor, the EMG might not show anything. Well, mine did show spontaneous activity that the EMG technician said indicated spinal issue, but wasn't indicative of ALS.

It worries me that I have stomach hypoflexia and that shows upper motor damage and I have missing plantar reflexes that shows there is some damage to the signal from the brain (hence it not responding). I read that missing plantar reflexes are always bad. I also have slightly brisk reflexes that are asymmetrical. I'm terrified this means my EMG was very early done and might've missed this disease.

I do have a form of scoliosis but I'm not sure this can cause these issues.

Please help me understand if this is indicative of ALS? I had a few hours of relief and now I'm freaking out again....
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Old 09-13-2017, 08:30 AM #9 (permalink)
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Default Re: Terrified; please help!

Both abdominal reflex absence and mute Babinsky can be normal variants. They are definitely not always bad. Spinal issues could also impact them so please follow up with your doctor and don't panic

Good luck
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Old 09-13-2017, 12:15 PM #10 (permalink)
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Default Re: Terrified; please help!

Thank you for your reply, Nikki. I'll be going to the neuro tomorrow and will shower her with questions for sure. I hope this turns out to be something else because I'm seriously losing it....

P.S. My English might be more of a curse than a blessing sometimes. There isn't nearly as much information about this in Bulgarian.

Best wishes,
Meggie
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Old 09-14-2017, 10:27 AM #11 (permalink)
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Default Re: Terrified; please help!

I'm back from the neuro who said that she doesn't think it's ALS but there is some peripheral damage noted from the EMG. She sent me to MRI to see if there is something in my spine, but the MRI came back clear and now I'm having a panic attack that this is the disease in its very early stages with only UMN involvement (brisk reflexes, hypoflexia, missing plantar reflexes). I've read so much and nothing else seems to fit and my calf is still going crazy with painful twitches.

Can someone give me hope that this may not be ALS? Please, someone help me
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