Struggling but trying to be realistic

[Jessie1234]

I have talked myself out of posting here 100 times. I have read all the stickies and am well aware of what they are saying and am trying to wrap my head around believing them.

With that being said here is what is going on with me 33 yr old female with a precious 1 year old girl.

6 mos ago I had my first freak out about ALS. I convinced myself I was slurring my speech and having issues swallowing. I asked my husband if he noticed anything and he told me I was crazy reasonably so therefore I eventually moved on.

3 mos ago I started to panic again because I felt that my neck was struggling to hold up my head so here I went again into ALS panic mode started to noticed twitches in my arm and random other places. Nothing ever constant just little tweaks here and there.

Now we are to the present well appx 3 weeks ago. I started to notice very subtle twitches in the Arc of my right foot (dominate foot). At first I wasn’t too concerned I have been spinning a lot and figured it was that well they started to become constant and so subtle like sometimes I only see them and don’t feel them which is most scary. Now I have noticed twitches elsewhere like the other foot and my knees, arms on occasion and for like two days straight my eyes!

This twitching crap has led me way down the rabbit hole. I was on vacation last week at Disney world and I wasn’t even present and I hate myself for that it was my daughters first time and she was so happy and here I was a psychotic mess watching my twitching foot all damn day every day!!!!

Mind you I walked 30,000 steps a day in that park on my twitching foot with no weakness as far as I can tell and yes I know I would be able to tell.

So here we are to this past week I dragged my husband to the emergency room (yes I know nuts) due to this damn foot and they did blood work and told me everything was normal which is great but not great as WHY AM I TWITCHING! That same day by some miraculous stroke of luck I got a nuero appt.

At the neuro she did a pretty extensive strength test all over and checked all my reflexes and told me everything was perfectly normal and I was very strong with good muscle tone! I told her my fear of ALS and she said you don’t have it but if you want for peace of Mind I will order you and EMG however she was 99.9% certain that nothing would be found on it. She mentioned BFS to me and also my stupid foot did NOT twitch in front of her so I couldn’t show her!!!!!

My EMG is scheduled for Wednesday and I’m freaking out waiting for this test!!!!!

Overall I guess my only real question is has ANYONE presented this way with an very very subtle Arc of the foot twitch no weakness or atrophy. My concern is maybe I noticed this SO EARLY because I’m nuts and this is going to develop over time into something since it’s somewhat localized!

Side bar I also have some very mild cramps in that foot and the other and also the calf’s from time to time! My joints ache however that’s nothing new and after I move it usually goes away it’s just like stiffness in the morning and I’m not 20 anymore!

Feel free to answer or not but I am quiet concerned however irrational it may seem it’s a real fear to me and YES i need therapy I know this and will work on tht soon!

 

[Nikki J]

My first symptom was weakness. Twitching came significantly after. Ditto for my sister.

Twitching as you absolutely know is common and meaningless without weakness. You were already examined by a neurologist who found no cause for concern. It matters not at all that you were not twitching then. It also will not matter whether you twitch during your emg.

BFS sounds very reasonable. I hope you will take the results of your emg and accept them. Know that they often see benign little things on emg so even if it has a slight blip it doesn’t mean impending ALS. If it is that way or completely normal be prepared to atop the thoughts that it was done too early,not the right area or the doctor was not competent. We see these questions crop up often after someone is cleared by emg.

I am so sorry you could not enjoy disney. I am glad you are prepared to seek therapy. Let us know after your emg but I bet you will be fine!

 

[Jessie1234]

Thanks Nikki! One more quick question as I know you have had many EMG and are very knowledgeable!

i have had some numbness in the tip of my big toes for a while now and I don’t even stress that as an ALS concern as I know numbness is not a symptom!

My question is if I had let’s say diabetic neuropathy in my toes would that make it look like I have ALS on an EMG or would that just show as like old nerve damage? Does that make sense? I don’t want to have something come up to freak me out that is actually realated to when I had gestational Diabettes while pregnant!

 

[Nikki J]

No they would not look the same. There are mimics though and even an emg that looks like ALS can turn out to be something else. The emg is an important tool but ALS is diagnosed with multiple tests and also needs an abnormal clinical exam which you don’t have

 

[lgelb]

Totally agree that you are in the clear as far as ALS, Jessie. Bear in mind also that sleep with a one-year old at hand is bound to be fragmented and that magnifies all physical symptoms.

I just want to point out for others concerned about ALS something important that Nikki pointed out -- if your clinical exam is not abnormal relative to movement, you do not meet criteria even before you throw in a normal EMG.

In advance of the therapy appointment I therefore hope you're making/have made, spend time with your family and doing things you enjoy -- the best therapy, really. Because if you allow fear to run your life, it will also ruin it.

Best,
Laurie

 

[Jessie1234]

Thank you Nikki and Laurie!

Your right I don’t sleep well at all but not because of my baby girl she is a rockstar and sleeps all night since 6 weeks old!

Work, and my general anxiety keep me up at night I’m no stranger to health anxiety and my hubby now says I need to do something about it which I intend to!

I’m trying to keep telling myself since my clinical exam went flawless I need to keep that in perspective while I wait for this damn EMG!

Also I’m trying to take it as a good sign the dr didn’t even want to give me the EMG she really just ordered it because my husband was like please give her the damn test!!!!!

 

[Jessie1234]

Ok I was trying to stay away until my EMG Wednesday however I’m scared this morning!

Both my arches of my feet are twitching today and I’m getting really scared! I did drink a lot at a winery yesterday and am feeling the pain today could that be why?

I’m just scared because for a few days it seemed I wasn’t twitching as much and then bam today it both feet and a lot of twitching!!!!

 

[Atsugi]

Stop it, Jessie. Calm down. You know better.
Tell us how the EMG goes. (And frankly, we're all expecting nothing at all on that.)

 

[KimT]

Jessie,

You probably got dehydrated....alcohol does that. Dehydration can cause twitches or make existing ones worse. Get some electrolytes back into your system by drinking lots of water and a variety of fruit (bananas, avocados, berries.)

I think your EMG will help you get ALS off your radar once and for all!

 

[Jessie1234]

Had the worst night ever last night. I couldn’t sleep at all and all I could feel was twitching all over my body arms, legs, feet, hands, side of my head! They weren’t even like big movements just little pops all over it’s so weird!

I’m trying to tel myself it’s the fact that I hardly ate yestserday and my anxiety is at the all time high waiting for this EMG which feels like an eternity away!

My husband is very worried and wants to like check me in for a mental breakdown!

It doesn’t help that I stumbled across another story of a person presented with body wide twitching as his first symptom!

I hat the internet it’s a blessing and a curse!

 

[codyclan]

Jessie,
Posting here does not help you. Please do not keep posting symptoms and stop with google searching. Your symptoms simply do not suggest ALS in anyway. You need to stop. Refrain from posting until after you EMG. Seriously!
Tracy

 

[ShiftKicker]

Jessie, if you could refrain from posting till after your emg, that would be best. This forum is a double edged sword for those who have anxiety about ALS. It contains a lot of information that can both reassure and increase anxiety, depending on how you interpret it. It's primary function, however, is to support those with ALS and their caregivers and simply does not have the capacity to also be used as a place for people to return to daily as a place to write a symptom diary. Please do write them all down for your doctor- who is in the best position to help you figure out what is going on.

Best of luck with your emg and please let us know how it went and after you get your results back.

 

[Jessie1234]

Yup I need a TT (technology timeout) as we say in my house!

I did get my Dr to move up my EMG to tomorrow!

One very quick question she is only doing 1 leg and 1 arm/hand for the test. Is that normal?

I will say she was very kind and reassuring even when I told her about the extra twitches and said with BFS they can be all over and she still plans to see nothing negative.

 

[Jessie1234]

Ok I had my EMG today and attached is a quick screenshot I grabbed before I left the office!

I see the part where he says no sign of MND however something is up with my right leg!

When the tech did the NVC she found nerve issues so then did the other leg which was NOT scheduled and sent me way in panic mode!

Next the neuromuscular dr did the EMG part and attached was his findings!

I’m waiting for my Dr to call me to discuss but if in fact that right leg had fibs which I can’t see should I be worried that something may come up later?

Someone give me feedback I just need to o ow if slightly abnormal is normal ish?

 

[affected]

honey it's as plain as can be - an old ankle injury.

I'm thrilled for you!