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rhlove24

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First - I have read all of the important documents at the top of this forum. I am extremely appreciative to anyone who takes the time to read and respond and I wish everyone on here the very best.

I am going to outline my symptoms, testing, and stats simply to make this quick and easy for everyone hopefully.

37 year old female, Caucasian, 5 ft tall, 165 pounds

12/29/16 - Headache came and went without Tylenol, etc... Dizziness and double vision (binocular) left in it's wake

1/3/17 - Dizziness and double vision worse, also added nausea as an additional symptom
-Visited urgent care, they sent me to ER

1/3/17 - Admitted to hospital; blood work normal (thyroid was checked, kidney function, etc...); MRI & MRA & CT of head all normal; echocardiogram normal, carotid artery ultrasound normal, EKG normal
1/4/17 - Opthamologist came to me in hospital and ordered myasthenia gravis testing, found no evidence of anything significant, referred to neuro-opthamologist; Neurologist came, did exam and sent me home from hospital that night.

1/5/17 - Began having arms and legs go numb/tingling at night when laying in bed and sometimes when seated

1/9/17 - Saw neuro at office; exam ok; ordered many tests

Cervical spine MRI - normal; Orbits MRI - normal; all bloodwork almost normal - IMG 23 for Lyme was reactive (told this is not indicative of Lyme).

1/23/17 - NCV & EMG
NCV - Normal
EMG - Abnormal; right side 2+ & left side 3+
doctor said we need to look closely at results, could be as simple as pinched nerve (but said nah when he remembered that arms and legs are going numb, etc...) and could be as serious as MND. Told me not to jump to any conclusions.

I am still able to make all movements. Unsure of atrophy - possibly in right outer thigh; doctor will look again on Friday when I return to see them (neuro)

Addt'l symptoms - lots of numbness, tingling, more pronounced at night time; minimal twitching in limbs at night time; twitching in face random times. Not headaches, but like very brief headaches - 2-3 minutes dullness and then subsides. Weird sporadic pain in my back mostly on the lower right side - like a tight muscle, but sometimes on left side.

Thank you again for all of your help. Sorry in advance if I have wasted anyone's time.
 
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Vincent

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Seeing as all your symptoms are sensory, that points away from ALS. There is something going on, but ALS is purely motor neurons, with no sensory involvement. Get it checked, but i don't see ALS in your future.
Vincent
 

rhlove24

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Thank you so much for taking the time to respond to me. I appreciate it tremendously.
Rachel
 

rhlove24

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Seeing as all your symptoms are sensory, that points away from ALS. There is something going on, but ALS is purely motor neurons, with no sensory involvement. Get it checked, but i don't see ALS in your future.
Vincent
Any thoughts on why it would affect both arms and legs though - fairly equally. Nothing else the doctors have suggested impacts both.
 

ShiftKicker

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The people here are sufferers of ALS, or their caregivers. While they are expert on all things MND/ALS, a doctor would be the most appropriate person to ask about other conditions or diseases.
 

rhlove24

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Terrified Mom

I am sorry - I posted a few days ago, but I have further questions. I am appreciative to anyone who can respond. Also - I have stayed off of the computer (Dr. Google). I figured this was the smartest place to come.

I have had normal MRIs and blood work. The NCV was normal. The EMG was abnormal - but that is all I know - it was abnormal. I have to wait to see doctor to get interpretation of results.

My concern is that my issues are in my whole body - not just my legs or just my arms - its everywhere. My twitching has become more frequent and more pronounced and spans my entire body, from my tongue and lip to my buttocks to my shoulder blade and everything in between. Last night I woke up in the middle of the night - sleeping on my back and I could not feel my arms immediately. Its like they were gone, really gone. They weren't numb and didn't have pins and needles, they were just gone. This morning when I woke, I had tender muscles in my back, primarily on one side.

I don't have any inability to complete tasks but some tasks are leaving my muscles more exhausted - noticeably.

I am constantly out of breath doing very simple tasks.

I know that diagnosis is often the result of failing, not feeling. I am wondering though if those that have been diagnosed felt the failure approaching. Did you feel the weakness coming on over days or months or did you just go from normal to can't do something one day?

Thank you,
Rachel

PS - I am a mom of two very young daughters and while I am scared of a diagnosis for myself, I am terrified to leave my girls behind.
 

codyclan

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Re: Terrified Mom

First, you need to stay in one thread. Secondly, wait to see what the doc says about the EMG. Your symptoms do NOT seem to indicate ALS. Thirdly, no--you don't 'feel' the weakness coming on. One day, you notice that a muscle or muscle group fails to respond. You don't 'feel' it, it just doesn't go. My husband is almost completely paralyzed but he still 'feels' like he could get up and walk to the refrigerator. ALS is a disease of the brain and nerves, NOT the muscles, so your muscles don't 'feel' fatigues and weak.

All the best,
Tracy
 

ShiftKicker

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Mod note: Please do not open more than one thread.
 

preacherman

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Re: Terrified Mom

Thirdly, no--you don't 'feel' the weakness coming on. One day, you notice that a muscle or muscle group fails to respond. You don't 'feel' it, it just doesn't go. ........
ALS is a disease of the brain and nerves, NOT the muscles, so your muscles don't 'feel' fatigues and weak.

All the best,
Tracy
I see these statements all the time by many different posters.
While I understand that with rapidly progressing ALS this may indeed be the case.

I also understand the need to attempt to keep those with anxiety issues about every little twitch or bit of perceived weakness calmed down.

However I have to say that I disagree with this thinking as a general rule to follow regarding signs and symptoms of ALS.

I have been diagnosed for short of a year but, in hindsight, have been having symptoms for several years.... these symptoms have included weakness, fatigue, tired and sore muscles, running short of breath, etc.
This has not changed much except that the symptoms have developed and are more persistent and consistent.

I can still walk... though with some pain and difficulty.
I can still use all limbs and digits.... though with a clear loss of dexterity and strength.
I can still eat and breath without any form of assistance..... though eating has become more problematic and I sleep with a bi-pap.

The point is that what I have seen and read, even on this forum, is typically more consistent with how I have been progressing than with the very rapidly progressing loss of complete functioning of specific muscle groups.
I am certain that I will have complete loss of muscle groups, as that is the final outcome of the disease, but it certainly hasn't started that way; so to suggest that some of the first symptoms and indications of ALS is the complete failure of muscle groups or the inability to do things is not at all accurate.

I am certainly not suggesting that any sort of these symptoms are an indication of ALS or even a precursor to having the disease... as there are many many causes and factors which could produce these symptoms.

I am merely stating that, in my opinion, we cannot completely discount feelings of weakness, muscle fatigue, etc just because it doesn't fit with our model.
As has been mentioned by many, we are not doctors and we are not capable of making diagnoses.
 

rhlove24

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EMG results please help interpret!

Very increased polyphasic potentials and diminished recruitment in muscles in lower legs.

Suggested radiculopathy but MRIs normal of spine.

Didn't do EMG in other areas and doc thinks just wait and see. Should I ask for emg of other limbs and areas or is this not a sign of ALS? Please help.
 

Atsugi

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In response to PreacherMan: I get what you're saying. I am no expert at medical terminology, but I wouldn't call those early feelings of fatigue a meaningful "symptom" which might help in making a diagnosis. Here's why:

Here's an analogy. In the legal profession, there is an axiom that says "ignorance of the law is no excuse." That's because everybody could claim ignorance. It is thus a "universal" defense. If ignorance were allowed as a defense, then nobody would ever be convicted of anything and the whole justice system falls apart.

This relates back to the diagnostic process because sensory feelings and fatigue are very nearly "universal" to just about anything that ails you. So those symptoms are useless--they could mean anything. Therefore, they are meaningless.

If any PALS or CALS wants to follow up on this particular topic, do it in the General forum. It's not really helpful to DIHALS.
 
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