The unknown is scary

[Lavender Lady]

In Feb this year I started having muscle twitching in my entire left arm. In April I started noticing that my hand was getting weak and I started having twitching in my face on my cheek. I was told I probably should see a Dr. in case it was a pinched nerve. My PCP told me I needed to see a Neurologist and that she also noticed muscle atrophy in my hand. The Neuro Dr. ordered an MRI of neck and spine and they were negative for pinched nerve and he did an EMG and NCS. he said he did not think it was nerve related but I had an abnormal EMG. He told me I need to see a specialist in Motor neuron disease, MS and Als at VM in Seattle. My appt. is one month away and I am very worried that I might have ALS. I still have 2 boys to raise. scared.

 

[joelc]

Welcome to the forum! I am sorry for what has brought you here but even if it does turn out to be ALS your life does not have to be over. Contrary to what most doctors will tell you.
I hope it is not ALS! You can read about my experiences on our website that is listed in my signature below. Try not to worry during the next month and we are here for you, ask anything you want or feel free to vent.

 

[Lavender Lady]

Thanks Joe,

I did look at your web site and it provided a lot of good info. Waiting is not easy. I turned 50 this year. I do not know what an abnormal EMg means I guess it could be many things along with all my symptoms. I have read alot about ALS and MS and they both have many of the same symptoms. Many of the stories and videos have brought me to tears it is just heart breaking what ALS does to you. But also so many people have made the best of a bad circumstance like you. I do not want either of those diseases and hoping and praying that I don't.

Lavender Lady (Rox)

 

[GlenBrittle]

ROX , before you worry about the worst, there is one important fact you are ignoring:

YOU HAVE NOT BEEN DIAGNOSED YET

Put a positive spin on it. The unknown is not scary, its an adventure. Go out and make memories.

Glen

 

[seanoc1]

Hi,

I am from Seattle and can understand your problems especially with getting to see someone. I have heard really good things about Dr. Ravits. I started having similar symptoms in March and have my EMG scheduled for this Friday. If it comes back "dirty" I will be referred to Dr. Ravits. All of my labs-(feel like vampires snack with all the blood drawn, MRI-3, cat scan 1, and spinal tap-1-they have ruled out a bunch of things. So the EMG will hopefully come back clean.

I understand you are scared. I am too. Take comfort that you are doing all you can to find out what is wrong. I will give some advice I got from people on this forum. Stay away from Dr. Google-bad Doctor. Try not to speculate on the worst. I have spent many a moment worrying and stressing over this. A good friend told me on Sunday, if you cannot control it, do not worry about it. If you let what is happening to you dominate your life, bad things will happen. It may not be ALS but taxing your body with the fear and uncertainity is not good for you.

Have you talked a Doctor about anti-anxiety medication. I am now on Prozac and it is helping me with deal with my issues.

Hopefully, it all works out for the best.

Sean

 

[Lavender Lady]

Glen,

You are right I have not been diagnosed yet and hope I don't. I know something is not right and eventually hopefully I will find out why. What I do know is that I am continuing to lose strength in my hand and the twitching is constant for the most part. I plan to live my life to the fullest either way Sean and I hope the best for you as well.

Lavender Lady (Rox)

 

[Zaphoon]

My philosophy is simple:

It can always be something else until it can't be anything else but ALS.

Until that time, think of it as possibly being something minor and treatable.

 

[Twinsmom]

Zaphoon,
I remember you saying that to me last year when I first joined the forum. It has been our mantra ever since...the not knowing is stressful, but nothing like KNOWING it's ALS and LIVING with ALS...

We'll stay in the Unknown category as long as possible-because in the end...if it IS ALS-there's not a Da@% thing we can do about it, and there's a POSSIBILITY of being able to treat pretty much everything else.

Peace,

 

[tatsu15]

In Feb this year I started having muscle twitching in my entire left arm. In April I started noticing that my hand was getting weak and I started having twitching in my face on my cheek. I was told I probably should see a Dr. in case it was a pinched nerve. My PCP told me I needed to see a Neurologist and that she also noticed muscle atrophy in my hand. The Neuro Dr. ordered an MRI of neck and spine and they were negative for pinched nerve and he did an EMG and NCS. he said he did not think it was nerve related but I had an abnormal EMG. He told me I need to see a specialist in Motor neuron disease, MS and Als at VM in Seattle. My appt. is one month away and I am very worried that I might have ALS. I still have 2 boys to raise. scared.

Hello Lavender Lady

Did your twitches occur before weakness and did you have pins and needles while you were twitching?

 

[Lavender Lady]

My twitches started in Feb 2010 and weakness started in April. No pins and needles felt, no pain associated with it and I was not concerned at all by any of it until my cousin who is a PA said it could be a pinched nerve and it could do permanent damage if it does not get fixed. I saw my doctor who quickly got me into a neorologist because of all my symptoms and had muscle already starting to atrophy which I had no clue was happening. After an MRI that was normal and an EMG that was abnormal I started doing research and I thought this was a good place to get info. from people who are experiencing symptoms similar to mine.

Rox

 

[Lavender Lady]

Oh, and I have been referred to a MND specialist but have to wait until the beginning of August to get in.

Rox