I'm so scared!

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Miraclemom80

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Hello all,
Thank you for taking the time to read and respond to my very long post. I apologize in advance for irritating anyone. I have been dealing with a lot for the past 3 years now. I have much to say so I hope you don't mind a long thread.

Back in 2011, I started getting really sharp stabbing like pains under my left arm pit area which lasted for almost a year, then it was in both sides in both arm pit areas. The pains came and went so I figured it was just hormonal. Years passed and it was just off and on.

Oct 2016 I started having severe pain going down both arms it went on for weeks. I went to my gynecologist for my annual and mentioned this, which made her send me to get an early breast cancer screening which came back clear, thank you Jesus!

Then in Nov of 2016, I woke up with both legs cramping so bad, they felt like they were freezing and painful. I went to the med clinic a few hrs later and they did blood work said just low vitamin d. So then I noticed as i was at the clinic a sharp throbbing pain in my mid to lower back and severe pain going down both legs simultaneously. It was a burning hot sensation in both legs the whole day. Then the pain stopped but both legs went right back to freezing cold. They didn't feel cold to touch but were freezing to the point of wearing double socks all the time, always needing a blanket etc. This went on for weeks. I have struggled with feeling like my feet were always cold off an on over the years but nothing on this level. My hands even feel cold too off and on.

Then after a few months, my freezing feeling stopped and pain came back along with twitching randomly in my body. One day it would be in my legs, next in my left arm, eye lid, knots in my stomach too and entire back as well and tongue. I finally went to my dr and they ran bloodwork again and put me on vitamin d.

But all these things continued so they sent me to a endocrinologist and did all the blood work and pee samples and all was fine. Then was sent to a rheumatology and was tested for all autoimmune diseases innApril 2018. All came back clear except for positive ana. They said that could be from anything such as ibs or issues like that. I have had bowel issues off and on for years ever since I hit my 30's with constipation and I still have that problem to the point I have to take lots of magnesium to help me go.

I would also get twitching or small fluttering feeling in stomach too, in 2011. I'm 39 now. I am trying to get healthy and drink more water and take vitamins etc but the fear of possible als is tormenting me.

I was sent to a neurologist in April of 2018 and they did MRI'S of entire spine and confirmed small bulges especially in my c6-7 area -aka- disc protrusion and in my lumbar L5 S1 area, which I wasn't surprised because in 2003, when I was 23, I woke up with being un ablen to move my neck and back due to possibly hurting it the day before. Then in April 2018 after emg and ncs of both arms and both legs it was said in a summary that I had bilateral lumbar radiculopathy in both legs due to a pinched nerve in the l5 S1 and my arms were fine. I even asked the neurologist if it was als and she said no. She's not an als specialist just a regular neurologist who's been there a long time, but she performed the tests and it took a long time and after awards she said that it was just my lower back.

I was still scared because of the twitching and now I have more twitching all over including my face now and sometimes my tongue. I have tried seeing a shrink to help me and it helped a little, but I just can't seem to kick this fear! I even have shaking as sometimes I feel like I'm shaking internally and I get cramping everywhere.

I just got two new mri's of neck and lumbar and showed same disc protrusions but the spine tech said they aren't exactly pinching anything but could be causing pain etc, which doesn't make sense because the emg and ncs I had last year said I have chronic lesions and pinched nerve in lumbar spine. So now this makes me feel the emg and ncs was done wrong. Also my upper back started having sharp pains and pops a lot now and has twitches as well as everywhere else. Also, I'm noticing the areas where I'm twitching, sometimes those places pop or crack like its arthritis, but I read it could be muscle wasting which is why its "popping" which terrifies me. The places where it "pops" and twitches even has a deep itch at times which is weird and in hope that it's not als.

The twitching i have went from being noticable and larger presenting kind, to small at times but I still feel them. I even started getting pins and needles type feeling in my fingertips unless they're twitches too, which it just feels like pins and needles. I feel so hopeless. Also, at times wake up with my fingers feeling stiff and they hurt but after a while it gets better but still there.

I'm so upset and feel like I'm dying. I am trying to get my crap together because I have two kids and one is special needs and needs me. I know y'all aren't doctors but I would desperately appreciate any info and assurance if you don't mind. I've read so much conflicting information. Some say they started with wide spread twitching others say it doesn't happen that way, etc. I'm to the point of having suicidal thoughts which I am making an appointment to see a therapist again. Please if anyone can respond I would desperately appreciate it.
 
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You don’t have ALS.

Please read this if you have not already done so:

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Pain and numbness point away from ALS.

Please keep working with your doctors, but the good thing is that you don’t need to be here.
 
You don’t have ALS.

Please read this if you have not already done so:

Twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Pain and numbness point away from ALS.

Please keep working with your doctors, but the good thing is that you don’t need to be here.

Hi,
Thank you for your quick response. I know twitching is very common and I guess I'm just confused due to all then stories I've read, with some saying that's how theirs started etc. If it's ok, may I ask a few questions? 1. Since I started having these abnormal pains in my arms and sporadic twitching in parts of my limbs, would the emg ans ncs still be correct even though the twitching has increased since then? They were still sporadicly happening when I got the emg/ncs. 2. So, would als have shown up in 2018 when I got the tests even though they were minimal? I've read the post you provided ans it helped but as I said I've read so many conflicting things it's hard to be calm. I forgot to mention I'm.now having pain and pressure feeling in my face especially jaw area and twitching in the face too. 3. Will an emg/ncs still detect als at any stage of the diseases or can it be done too early? Thanks for responding. I promise I won't keep asking after this, just need deep reassurance. Thank you so much.
 
Hi sorry I forgot to mention in my first response is that is the popping feeling and noise related to muscle wasting? I read that it was part of it which is scary because that's what's been also happening everywhere, in my legs, shoulders, arms, fingers, neck etc. I have also been having a weird sensation like drops of water feeling all over my body even in my eyes.

Thank you.
 
A normal EMG rules out ALS, especially if you have twitching and especially if the EMG was done on a symptomatic area. They will even pick up abnormalities in some asymptomatic areas on a person with ALS. So it can not be done too early.

Popping has nothing to do with ALS.
 
A normal EMG rules out ALS, especially if you have twitching and especially if the EMG was done on a symptomatic area. They will even pick up abnormalities in some asymptomatic areas on a person with ALS. So it can not be done too early.

Popping has nothing to do with ALS.

Thank you for responding and for your patience. I really appreciate it. Have a blessed day and I'm praying for everyone's healing and good things to happen in Jesus name, amen. Isaiah 53:5, Isaiah54:17 (Hope prayer comments are allowed, no disrespect intended.)
 
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