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mtngirl

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Hi. I am posting because I am super scared that I have ALS. I started having weakness in my hands about four months ago. I wrote it off as nothing serious. However, in the past couple of weeks I have had increased weakness and it's spreading into my left arm and left leg. Also, I'm having tons of muscle twitching and my left cheek feels numb and weak when I smile. Went to my GP who recommended a neurologist. So, I'm going there on Thursday. Has anyone else had the same symptom?

Thanks...I'd appreciate any advise and god bless.
 

carlogio

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Good luck with the neurologist. You're doing the right thing!
 

mtngirl

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Thanks. Boy it sure is scary not knowing what is happening in your body isn't it? I appreciate the encouragement...I have two small children that need me to be around!

Good luck to you and thanks for the post!
 

wright

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Hello mtngirl

Things that point away from ALS:

Weakness starting in both hands at the same time. Typically, ALS starts in one limb and then moves to the adjacent limb.

Moving from hand to forearm and leg at the same time. Again, typically ALS moves from one limb and then symptoms are felt in another limb. For it to progress into your forearm and leg at the same time, isn't typical.

Numbness in cheek is a sensory symptom, which again, isn't typical of ALS.

The twitching can be caused by a number of things, including stress and lack of sleep.

Relax and I'm sure your neurologist will get to the bottom of your condition.

Keep us posted.
 

mtngirl

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Wright...thank you. You have helped me to calm down a bit. I lucked out and got into a neurologist day after tomorrow so should know more in a couple days. Thanks again for your thoughts and god bless you.
 

mtngirl

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Back from neuro

Hi...just wondering if anyone can comment on the following.

Went to the neuro last week and had an MRI and extensive bloodwork and 24 hour urine heavy metal test. All came back normal...which is good news I know. But my symptoms continue to get worse. I have major fatigue and weakness in my left arm and started in my right arm two days ago. I continue to have muscle twitching randomly and muscles feel weak in my legs off and on. I am 39 years old...female.

Anyway, I'm having an EMG next Wednesday.

Any thoughts on anything else this could be? I am trying to stay positive but I'm pretty scared.

Thanks to the great people on this site!
 

PDaddy

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Let's hope it isn't ALS, cuz ALS sucks! I started a thread here a couple of months ago called "Not me too!" and it turned out that I do have ALS. The EMG can show MND, but the Drs will rule out ALS if they can. Again, think positively and pray it isn't ALS. Keep us posted!
 

laurel

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Hi Mtngirl,

My husband had weakness and atrophy in his right hand, major fatigue, some fasciculations. EMG and nerve conduction studies showed weakness in all four limbs. He has been diagnosed with CIDP MADSAM variant and is treated with monthly IVIG and he is improving so far. Good luck. Oh forgot to say that CIDP is a disease that affects the peripheral nervous system, and we feel blessed that it was not ALS which was a differential diagnosis in the beginning.
Laurel
 

mtngirl

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Thanks Laurel.

I can't believe how much worse I am feeling every day. Even typing this is causing intense fatigue in my arms. I just collapsed on the couch last night after a day of caring for my two young kids and fell asleep at 7:30. Not at all like me...I usually have tons of energy.

I'm a weak and twitchy mess! Have a neuro appt. Wed. and will let you all know. Thanks so much for the support.

I've been having diarrhea too...does anyone know of any connection?

Wishing you all a good day!
 

CindyM

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Ther might not be a conection but if you have a bug of some sort it will make your symptoms worse, I would imagine. Good luck at the neuro's tomorrow!
 

mtngirl

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Back From Neuro

Hello...I had my EMG and Nerve Conductivity testing today and both were normal. EMG picked up one fasiculation which she called "beneign". Anyway, this is a huge relief! But I am still having weakness in my arms and hands to the point where it's hard to type right now. Neuro was at a loss for what is causing my weakness and now my hands and arms are cramping as well. She told me to keep her posted if I worsen but because my bloodwork and all other tests were clean she didn't have any diagnosis. She said she has worked with hundreds of ALS patients and that it doesn't usually present in both arms so close together...started in left a month ago and in the right a week ago.

Just wondering...how confident should I be with this assessment? Should I seek another opinion? Any thoughts?

Thanks to the super people helping on this site and thanks for the good wishes.

Mtngirl
 

wandabates

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i know how you feel!

:cry:
Hi. I am posting because I am super scared that I have ALS. I started having weakness in my hands about four months ago. I wrote it off as nothing serious. However, in the past couple of weeks I have had increased weakness and it's spreading into my left arm and left leg. Also, I'm having tons of muscle twitching and my left cheek feels numb and weak when I smile. Went to my GP who recommended a neurologist. So, I'm going there on Thursday. Has anyone else had the same symptom?

Thanks...I'd appreciate any advise and god bless.

i have been going to my neurologist for over 7 months now and he just did my second emg nerve velocity test and mine came back alot worse then the first time.i have had swallowing difficulty,chewing is really hard,now tongue weakness,absent gag reflex,twitches under my skin,spasms mostly on my left side,and my neuro said today he was almost positive i have a motor neuron disorder now .he is sending me to the cleveland clinic to a specialist he knows that deals with these all the time.you do need to keep on writing your symptoms down,because dr's seem to not like diagnosing this disease .i felt all the dr's i had been going to thought i was crazy or making this up,it scares me to death but at least after 3 years of dealing with this i know what the problem is now..good luck ...wanda
 

mtngirl

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Thanks Wanda. I am so sorry to hear about your diagnosis. Like you said, now you know what you are dealing with.

This has been the most frustrating thing I have ever dealt with. I know my body and I know something is very wrong. When my EMG was normal all my family and friends were so relieved to know that I don't have MND. Neuro said she was sure that I don't have MND. But, I am weaker every day and the twitching is making me crazy. So, how could I have all the symptoms but not have it. Neuro couldn't offer me any other explanation for my dibilatating symptoms as all of my bloodwork, etc. was normal. Now I think my husband and family think it's all in my head. I have never been a hypochondriac...quite the opposite.

Anyway, I'm going to the University of Colorado Neurological to get a second opinion. I need to know what's wrong with me...I have two young children. Thanks for the advise of writing everything down...I will do that.

Thanks for listening. Step out in the sunshine today.

Tracy
 

crystalkk

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tracy,

I totally understand how you feel, I am going through the same thing. Everything coming back normal and continuing to decline
Do you have any atrophy? I have atrophy in my hands, forearms, feet and ankles with emg still coming back normal.
I have 2 young children also. It is very difficult watching your life totally change with no answers.
 

mtngirl

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Crystal,

The worst of my symptoms is in my left arm and it is smaller than the right. But I am right-handed which accounts for some of that? Also my arms have always been twiggy so it's hard for me to tell. Mostly, my symptoms are weakness, cramping, and twitches.

Thanks for posting to me...it's nice to know I'm not alone in limbo-land. It's so hard feeling so weak and bad but still trying to keep on the happy face for my beautiful kiddos (5 and 7). But, what else can I do...I can't seem to find answers. Just trying to appreciate each and every day like never before until some answer comes.

Please feel free to post to me anytime (not sure how all that works on here...PM?). Sounds like we're in similar shoes.

Take care of yourself and best of luck.

Tracy
 
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