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Author Topic: Anyone with ALS fears? I had clean EMG and still can't shake it  (Read 224 times)

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Offline Pyr

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Anyone with ALS fears? I had clean EMG and still can't shake it
« on: February 14, 2014, 02:23:58 PM »
Ive had a hell of a six month time period.  Lots of muscle spasms unexplained headaches, etc. and then I started twitching a month ago.  Dr. said no ALS but got second opinion for a neuromuscular dr with fellowship and he said no ALS but agreed to EMG-= totally clean.  I am just worried b/c I read something which said sometimes it doesn't show up on EMG for a few months.  I can't live like this.  I am starting on so many meds (Lexapro , Klonopin) and now they want to start me on Zyprexa b/c they said Im bordering delusional.  Someone please help, advice, reassurance.  I am starting cognitive thearpy next week.   I am also doing a separate post about involuntary swallowing if anyone has that issue....

Thanks
Lin (45)
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Offline Hypo84

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #1 on: February 14, 2014, 02:30:33 PM »
Hello.

ALS doesn't start with muscle twitching, also headaches have nothing to do with it. EMG is a proof that you don't have ALS, so the best thing for you would be to stop Googling and try to relax.

Take care
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Offline MadyMa

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #2 on: February 14, 2014, 03:11:48 PM »
I can totally relate to what you're going through.  I started with ALS fears about 12 years ago.  I had a weird, numb feeling in my left hand and left foot.  Also felt like I couldn't write right or hold a hair dryer without my hand feeling weak.  I had constant muscle twitching.  I thought for sure I had ALS so I went to several doctors and then a neurologist.  I had 2 EMG's, a brain MRI and blood work.  Everything came back normal.  I was so happy and eventually the symptoms went away.  BUT... in 2006 it started all over again.  My doctor said he didn't think I had ALS, but I got a neck MRI because of neck pain I was also having.  Turned out I had a bulging disc and the Dr. said that was the cause of all my symptoms.  Again, felt better and symptoms went away.  UNTILL...2011.  I started this eye twitch that lasted 6 months.  My fear started all over again but this time I went to therapy and I learned to trust my family doctor so after a few months I was able to calm down about it and my symptoms yet again went away.  Fast forward to today and yes, I am going crazy with all my symptoms and worried again about ALS.  This time I have shoulder pain so I went to my doctor and he put me on prednisone.  He said he doesn't think it's ALS, but he said if the pain doesn't go away he wants me to get an MRI and maybe an EMG.  I worry that the EMG's I had were done too early and now I do have it.  I swear I feel like my hand just doesn't move right and that I am starting to slur my words.  I am terrified of having another EMG because of the results.  Sorry for such a long rambling post, but I needed to get my fears out of my head!  This is pure torture. 
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Offline jessica0113

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #3 on: February 14, 2014, 05:09:58 PM »
I'm going through this right now with my hubby, who also had a clean EMG and is now feeling trouble swallowing.  Multiple doctors have checked him (including a neurologist).  The only diagnosis he has received is anxiety.  He's been having twitching for 2 months.  I'm a biostatistician and I am utterly convinced he does NOT have ALS, even though he also believes he got the EMG too early.

It seems the ALS symptoms and anxiety fears are quite common, just from the overwhelming number of people with anxiety who swear they have ALS, based on very real symptoms.  In a medical database I looked up the benign fasciculations- nearly 50% of those with fasciculations also had some sort of psychological disorder- ranging from anxiety/depression to alcoholism.   This reinforced my opinion that his very real symptoms are caused by anxiety, and nothing else.

Good luck to you- I hope you will be able to accept the good news you have received.
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Offline Pyr

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #4 on: February 14, 2014, 06:21:11 PM »
MadMa- Even I can tell you unequivocally that you do not have ALS - after all that time there would be significant deficits.  No way it would hide dormant for YEARS.  No way.  YOu are FINE.  How clearly I can see it with you, but not myself.

You raise an interesting point about neck injuries.  I have several severe herniations from c4-c7 which I need to see a neurosurgeon about next week.   They have stiffened up my neck and trap area something awful; My physical therapist also tells me a lot of my neck muscles have knots which are causing my throat issues/ear issues.   Jess, like your husband, I have throat issues suddenly too.  I have this involuntary swallowing reflex that kicks in when I try to go to sleep or wake up.  Very weird.  And a constant sore throat and painful tongue, yet not when I eat or swallow.   I am told slurring is the first in ALS with swallowing issues, but I have convinced myself I have the "precursor."   Of course I have all interpreted this as bulbar. 

Mine started with headaches and facial pain issues in August.  That progressed to severe muscle spasms in the neck, stiff neck and occipital headaches.  All with nerve type pain in the teeth, jaw, etc.  It would come on as head rushes or attacks and I could not sleep for days.  My neuro did not know if I was having migraines, seizures, etc. but they were DAILY.   It did follow a very bad flu, so maybe post viral?  In any event, I was fine with all that but then I started getting severe burning arms and traps and shoulders when I slept and then the twitching started at the same time. 

I hear you about anxiety/psych issues.  I have been on the health rollercoaster since August, and with every dr shrugging their shoulders and a lack of diagnosis I have imagined many illnesses along the way with each test-- including a cancer that only 5% of cancer patients get in their meninges of their brain- and I don't even have cancer!  Ive had 2 hospitalizations, 3 brain MRI's, cervical MRI, lumbar puncture (which I forced), EEG, EMG (which again I forced, two neuros said no ALS).    So I have been so worked up and I thought the EMG would put everything to rest but I am just as keyed up as ever, so the twitching is not really subsiding.    I am 45 (female) and imagine maybe I am beginning some bizarre perimenopausal thing.  The neuromuscular specialist I saw who did the EMG said "benign fasciculation syndrome" and he thought my trap/shoulder issues and all my weird ear/head/face pains were myofacial (kind of like the little sister of fibromyalgia- just top half of body).   

I am through with conventional medicine and vowed accupuncture, yoga, meditation to get back on track, yet every day that goes by I seek the reassurance of another doctor... my family is done with me and ready to commit me.  I have 3 beautiful kids (2 who are preschoolers) and am so depressed that I can't enjoy them.  Health anxiety is the pits.

Thanks for your comments.  I think once the twitching subsides (crossing fingers) I will be in a much better state of mind.

L


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Offline Pyr

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #5 on: February 14, 2014, 06:57:55 PM »
Oh and I will add that I did not start twitching until they put me on ambien and then stopped that and started me on klonopin (Benzo).  I know benzo's are supposed to control twitching, but it just seems odd to me that none of the twitching and burning nerve pain in shoulders started until they insisted I be medicated......

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Offline etethorpe

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #6 on: February 14, 2014, 09:12:03 PM »
I am also going through a major ALS fear right now so I can relate to what you are saying.  I have not had an EMG (I'm too scared to take this disease to the doctor), but if I did have one and it was negative I would be so relieved.  Listen to your doctor.  Nothing has shown up to show him you do have ALS so do what you can to believe the good news.  You will be fine!
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Offline Sunlover

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #7 on: February 15, 2014, 09:11:14 AM »
I heard that ALS starts in one hand or one foot first and it starts fast - they described it like one day you can pick up a milk carton and the next day you CAN'T.  Not that it feels weak, that you CAN'T do it.
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Offline MadyMa

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #8 on: February 15, 2014, 09:35:05 AM »
To Pyr:  I am 48 years old and have menopause symptoms for at least 3 years now.  Maybe this is triggering the symptoms again.  My gyno says it isn't, but maybe he's wrong! I have a difficult time convincing myself that this is all due to anxiety, but after reading so many posts on this site, I see that anxiety can cause so many different symptoms.  I am really going to make an effort to focus on something other that my symptoms today.  I wish you all luck in your struggles with this pit of health anxiety.
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Offline jessica0113

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Re: Anyone with ALS fears? I had clean EMG and still can't shake it
« Reply #9 on: February 15, 2014, 10:36:41 AM »
Pyr,  I've also had the weird ear/head/face pains, along with eye pain and vision problems (my peripheral vision went out for a week).  I've had an MRI and CT, and everything is clear.  I also have 3 kids (4, 2, 5 months) and I'm guessing this is all hormonal/stress related.  If it were something terrible, the tests would have caught it.  Having young kids is not easy!

Good luck to you.  Don't miss out on your beautiful children because of your HA.  My husband might have no memories of our baby if he continues his HA for months longer.  By the time he comes back to the land of the living, she might very well be a walking, talking toddler.
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