Old 10-29-2017, 10:25 PM #1 (permalink)
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Default What is this?! Please help...

Hi Everyone,
This is my very first forum I have ever done. Iíve debated for quite some time now about posting so here goes nothing.
Iím a 33year old female. I have 3 small children. I know something is going on with my system but I donít know what. Last spring I got massive head fog and body twitches. I loaded up on electrolytes and the twitching subsided. Then this summer I started getting chest and nerve pain down my arm. I also need to add that Iím a runner. I was training for a marathon and a week after my 18miles run the twitching came back. I became extremely fatigued and was twitching all over. I also started having to swallow a lot. I felt like my body was attacking itself. I became terrified and so anxious.
Fast fwd to now Iím still getting body wide twitching and head fog. I donít get cramps but my muscles burn and I get sharp shooting pain...I think itís nerve pain. My quads felt so weak after my last run and they have been burning/tingling since yesterday. I have not fallen or dropped things but the excess saliva has come back. I am not slurring though. Does this sound like ALS? I am so scared that I may have something seriously wrong with me. All I can think about is my husband and 3 kids.
I do feel like I need to fill you in on a little of my history. I have been taking Tegretol (epilepsy) since I was a teenager and this last year was diagnosed with two autoimmune disorders and last week was diagnosed with fibromyalgia. Iíve had a rash under both armpits since July and a reoccurring rash on my neck for almost two years. My neurologist doesnít think I have ALS but autoimmune and my Rhuematologist thinks itís more related to Tegretol or an autoimmune issue. I only saw him once and will see him next month to go over the blood work he had me do. I will be switching my seizure meds in hopes it will relieve some of my symptoms. As of now, not one doctor thinks I have it but my neurologist set me up to get EMG testing done ďfor peace of mindĒ.
Basically, I am so scared. I am having terrible anxiety and depression over all these symptoms. I have no idea what tomorrow has in store for me so I make sure to race around with my kids and dance when they want to dance. Something is off, I donít know what so I thought I would turn to you and ask you opinion. Any thoughts would be so appreciated.
Thank you for reading this
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Old 10-29-2017, 11:00 PM #2 (permalink)
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Default Re: What is this?! Please help...

Aaaaaahhh!! Please read the Pinned Post titled Read Before Posting.

Twitching is FAR TO COMMON to be diagnostic of anything!

You'll also learn that "I feel" is sensory symptoms, and ALS is NOT Sensory.

Plz go read it now.
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Old 10-30-2017, 12:33 AM #3 (permalink)
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Default Re: What is this?! Please help...

Hi Greg,
Thank you for your response. I read the post and I do feel relief but I know something is definitely off with my system. This is an amazing and supportive group forum and I thought I’d ask what everyone thought. I have no idea why I’m getting nerve pain throughout my body,twitches, foggy head, perceived muscle weakness, and fatigue. I will have to keep you updated when I go in for the testing.

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Old 10-30-2017, 12:35 AM #4 (permalink)
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Default Re: What is this?! Please help...

Definitely follow up! But it doesn't really sound like ALS, hopefully the EMG will give you some reassurance.
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Old 10-30-2017, 12:58 AM #5 (permalink)
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Smile Re: What is this?! Please help...

I definitely will! Thank you and best wishes to you! 🤞🏼🙏
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Old 10-30-2017, 12:15 PM #6 (permalink)
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Default Re: What is this?! Please help...

Sarah,

Twitches are nonspecific and could be anything. Your other symptoms (pain, foggy headedness, fatigue, perceived weakness) could all be consistent with fibromyalgia.
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Old 10-30-2017, 01:38 PM #7 (permalink)
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Default Re: What is this?! Please help...

Thank you for your response Karen. I felt a little more comfort after reading the first comment to my post but then at night I saw my whole pinky toe twitch a few times. I canít tell if it locked up because I have a small little pinky toe. Itís sore today though so maybe thatís a good sign?!
I will be getting the EMG done on the 15th so Iím just praying and hoping for good results.
Like I said, possibly the fibromyalgia and they are going to have me switch my seizure meds in case the Tegretol is causing any of my symptoms. Iím shocked a medication, after being on it for 15 years can do this to you?!
The process of not knowing what is going on and feeling like your body is breaking down is terrifying. The other day I was cutting my daughters turkey sandwich in half and I felt a pop in the center of my hand. Itís been sore ever since. It was just a turkey sandwich?!?!?!
Thank you so much for everything.
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Old 10-30-2017, 04:25 PM #8 (permalink)
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Default Just curious: do runners or athletes have a different onset of als than others?

Hi,
I read the ďdonít post before readingĒ but Iím just curious if athletes have a different onset than others? Such a burning shaking thighs after a workout theyíve done multiple times. Also burning/tingling in thighs and feeling weaknes?? Or is it typical that athletes have the clinical weakness as well?
Iíve also read twitchingthroughout body is normal and usually harmless. What about a pinky toe twitching and hurting?
Thank you.
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Old 10-30-2017, 04:34 PM #9 (permalink)
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Default Re: What is this?! Please help...

Mod note: Merged threads. Please stay on one thread. Please review the "Read Before Posting" post again for forum posting rules.

I recommend you avoid this forum until your EMG. There's not much more people here can help you with until you have further info from your doctor. What this forum CAN do is increase anxiety and prevent you from going about your day.
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Old 11-02-2017, 09:57 PM #10 (permalink)
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Default Re: What is this?! Please help...

I just wanted to let you all know I went in and my EMG turned out normal. Thank you for answering my question. I only have one more and hope youíll respond. My tongue feels swollen and I have to swallow a lot. It almost burns. It seems to get tired almost and is shaking. I can stick it out straight without it shaking but if I stick it out flasidly it will twitch a lot. I can talk fine and no one has said anything but I definitely feel discomfort. Should I be concerned of Bulbar onset or am I over worrying? I can certainly feel it, the sensation is that of the meds a denstist administers and slight burning and it bothers me. The doctor who took the test didnít look at it but he didnít seem concerned and thinks itís possibly the fibro or medication. Iím just curious are there other things that can cause this scary symptom. I hope to get a response. Thank you for all your time.
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Old 11-02-2017, 10:35 PM #11 (permalink)
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It isn't ALS. Fibro can cause many symptoms that you listed. Follow up with your rheumy.
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Old 11-03-2017, 12:34 AM #12 (permalink)
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Default Re: What is this?! Please help...

Hi Kim,
I hope you are doing well. I just wanted to say thank you so much for responding. It amazes me how the body can create really scary symptoms. I do have an appointment with my Rhuematologist in a couple weeks and Neurologist in the next month and a half. I feel so tired and now the twitchy tongue/ excess saliva/ occasional cough are freaking me out. Trying to stay positive, I passed the EMG!! I will admit, I bawled when he told me and I asked if I could hug him. Something is def off and I look fwd to seeing my Rhuematologist SO much. My hubby thinks I will be ok.
Thank you for being a friend on here.
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