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BoxersRule

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Hi there (28 yr old female)- I have been or had been feeling GREAT lately after my EMG. My story to refresh- I had/have experienced widespread twitching about 20 someting plus months ago- it went away on its on. Dont know how or why. Well 3 months or so into my pregnancy it came back Random thumps here and there no hot spots. Etc. Had 2 clinicals , strong as a ox, reflexes symmetrical etc. I was good with that- then freaked out again.
This time the cheif of neuro physiology did a EMG since I told her I had fasciculation all over. Random times. She didnt want to but she said I needed peace of mind. Well We did 10 muscles. 1 fasic was found. NOTHING ELSE. No abnormalities anywhere.

I picked up my EMG report and it says:

Indications for Electrodiagnostic Study:
***** ****** is a 28 year old female, who has noted twitching in random spots of her body at random times. This is worse in her calves and she also has some in her triceps, biceps and shoulder area. She denies cramps or weakness. She was initially seen on April 21, 2008 and was given the diagnosis of Benign Fasciculation Syndrome. She is also currently pregnant.

She has past medical history significant of OCD and ADD.

Her neurologic exam is completely normal. She is referred to evaluate for fasciculation syndrome. There are no contraindictation or limitations. Risks and benefits have been discussed with the patient.

EMG results:
1. The right medial gastrocnemius muscle reveals one fasiculation w/out any other spontaneous activity and normal motor unit potentials.

2.The right deltoid, triceps, biceps, FDI, APB, anterior tibialis, vastus lateralis, peroneus longus, and vastus medialis muscle show normal insertion activity and motor unit potentials with no spontaneous activity.

3. A monopolar needle electrode was used.

Interpretation of electroneurodiagnostic studies:

These electrophysiologic findings reveal one fasciculation in one muscle out of 10 muscles that were studied. There is not an increased amount of insertional activity, as would be seen in motor neuron disease such as amyotrophic lateral Sclerosis. THere are no previous test for comparison. The diagnosis is still 100% consistent with Benign fasiculation syndrome.

Dr.**** ******, MD
Board Certified EMG, EEG, EKG, MAGNETIC MRI and NCV.

Well I was doing GREAT! Then recently I started thinking about BULBAR ONSET. I called back and she said "Mrs.******, when you presented you had already presented w/ fasciculatons. Even if it was BBar onset your fasiculation and EMG would show ABNORMALITIES. I also read that on the HARVARD, the CLEAVELAND CLININC, and the MAYO website. My neuro explained if it "WAS" Bulbar onset- even if my bulbar EMG was clean if I had fascics all over ...the EMG would be abnormal going on almost lets 5 months this round of twitching and then a previous 20 something months ago with twitching.

The fasciculation she found appeared in isolation etc.

Why am I NOW freaking over bulbar- I guess because I read NUMEROUS pals had clean EMG with BULBAR? So this is contradictig EVERYTHING I have read and been told.

I dont understand. I had peace and now this CRAP is lurking in my head. I spend every second making sure I am not slurring and saying words correctly. I had NO UMN signs when tested by neuro. However if my fasiculations were occuring due to als she said that means I have ALL of the fasiculation occuring from UMN and LMN and the EMG would be abnormal at this stage.

SOMEONE feel me in. I feel ike jumping off a cliff and Im 5 days away from delivery.
My neuro told me @ some point I have to use my common sense and think I have jumped from limb onset to bulbar onset. She has ALS patients. 5 right now she is following.

I need help yall. Pleas....VERY DOWN.
 

BoxersRule

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Also,

If it was BULBAR I would be almost 6 months into this. I swallow drink chew fine. Been gaining weight etc. My neuro wont even entertain the thought of this. She provided me with a plethra of info to read. I am sooo scared out of my wits to think I am about to have a baby and may not even see her turn 1.
 

vmd

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Please make certain you stay safe. Your baby needs you and will for a long time. What is certain is that your neuro doesn't think you have ALS, the rest is all speculation or "what-if," on your part. We can really destroy ourselves with "what-ifs" and fail to live in the present. I will keep your intentions in mind today as I say one of my Rosaries.
 

wright

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I'm not getting it, DeeDee . . . you think you might have bulbar onset ALS and yet you don't have any bulbar symptoms? Please read that sentence over and over again.

You really need to relax. You have a very smart neuro that did all the right tests and gave you the all-clear. Concentrate on that baby of yours and feel good about life. You deserve it.
 

BoxersRule

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Wright-

I do have bulbar symptoms.. I've been biting my tongue- but my neuro and dentist told me it was one because I need my tooth BACK in the area on the bottom of my mouth. They couldnt put it in when I got pregnant. So it causes my tongue to go into the open space. So I think I am slurring.
I also feel like Im slurring but NO ONE notices it...WHY THIS WHY NOW? I was sooo OVER this whole thing.

I read that some PALS had CLEAN EMG w/ BULBAR so it makes me think I did too. Then ONE lady said she had both limb onset and bulbar onset- and her bulbar onset emg was dirty- she didnt say about limb.
There again another contradicton to EVERYTHING I read that ALS presents in a segmental fashion. NOT BOTH! However they lead to eachother.

Please dont kill me wright- I have a BAG FULL OF MEDS my psych wants me to start as soon as this baby pops out...

DeeDee
 

wright

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I'm not mad at you in the least, DeeDee. I'm just desperate (as are so many on here . . . and your neuro . . . and your psychiatrist) to get you to relax. I know how the prospect of having ALS can take over your thoughts and how terrifying it is; I was there . . . I know how you feel. However, you have to change the way you think. Instead of having the attitude: "Prove to me that I don't have ALS" . . . change it to: "Prove to me that I do have ALS" So far, your neuro and your story indicates that you DO NOT have ALS. Please hold onto that as best you can. I bet if you focus on your baby and all of the wonderful things that will come with his/her arrival, will help. Hang in there and I wish you peace. Take care.
 

Peg B

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Hi DeeDee,

Peace be with you.


You have both OCD and ADD. As my daughter 26 also has both, I assume you have panic attacks too. You are currently without meds and experiencing an onslaught of hormones because you are pregnant. With the one assumption of panic attacks, the rest of the facts here can wreak havoc on you. Please give yourself a break and get peaceful.

You are a smart young lady and you know that time will clear some of this up. I want you to imagine August 1. You have a new baby and family support and you are back on meds. But to get there you need to take time to get the baby delivered and the meds back up to a therapeutic dose. Think of these 7 weeks or so as a bridge to a better time. Write back on August 1 and then see about your questions regarding ALS.

The mantra we always use is "I can do anything for a year." Please tell yourself "I can do anything for 7 weeks." Meaning I can put this aside (my fear of and obsession with ALS for 7 weeks) and then check it out again.

I am hoping that this way, we have helped our daughter may also help you. God Bless you very well. Sincerely, Peg
 

olly

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dee dee

godbless you dee dee, i responded to your last thread and then you deleted it saying you were ok. in your own words you said it boils down to anxiety.
as i said in that other thread you have had no neurological findings in your neuro exam indicating umn/lmn signs as well as a clean emg.
if something was missed on a emg by accident you would have definate neuro signs on examination.
i thought you had put this all behind you and i was proud of you owning up to your anxiety. please enjoy the next 5 days,pamper yourself and relax ,you may not get the chance for a long long time lol.
take good care of yourself dee dee.
godbless
caroline:-D
 

BoxersRule

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Thanks Peg, Wright, VMD

I've prayed and prayed and I Feel GOD has given me all the answers- clean emg's clean neuro exams no debilitating weakness/atrophy etc. No worsening of symptoms. Anxiety can wreak HAVOC had. My pscyh is REALLY worried about my well being @ this time. Only a few more days and I can get on my meds and get back into perspective. How irrational am I being from going from CLEAR LIMB ONSET- to thinking BULBAR? Is this how my brain is wired or what?

Thank u all- Prayers to you all- there is NOT A DAY that goes by whether I am here or NOT that I dont pray for each and everyone of you! Regardless if I post every day or not. I am lurking and praying for you all.

I can be strong. I know I can. MY symptoms seem to go away when Im busy- they only come back in idle time when I have nothing else to do but focus on my every move and sound and snort and cough or sneeze I make.

DeeDee
 

patricia1

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I dont unerstand Your emg report is wonderful. Relax Your having a baby that your priority right now and all you talk about is ALS you dont have it, the emg said so..And now your rambling about Bulbar symptoms like biting your tongue thats crazy,You would have difficulty talking chewing swallowing your tongue would be short scallopped diffultly going side to side quickly. You are fine Get off the forum and enjoy your life and remember that baby feels your stress and thats not fair.
Pat
 

BoxersRule

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Hey Patricia

You are right- I am soooo sorry for being selfish. I love you and your in my prayers. Thank you soooo much for being there for me. Thank all of you. I apologize again for being soo sooo selfish! I shouldnt even be on the forum. However... I do pray for yall and thank yall for your support.

Again Sorry- I let my anxiety ramp up sometimes and I swear what I feel it REAL when its up at its highest...

God Bless, DeeDee
 

patricia1

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Dont be sorry Be happy and enjoy that little doll thats coming Tell us when the baby is born .

Good luck youll be fine


Pat
 

fiddleplayer51

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DeeDee,
Pat is right, "don't be sorry, be happy"! You've got every reason to be happy with a new little life entering this world. And I agree again with Pat that it's not fair for you to inflict such stress on this little baby.
Even though I can understand having some worry, it's completely foolish to carry it to the degree you have.
Do all you can to take care of yourself and enjoy this precious time anticipating the birth of your child. Forget about the forum for now. We mothers are so lucky for the privilege to nurture new life. What a gift and miracle! Make the most of it!
Be at peace,
Jane
 
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