30 years old, female, scared of ALS... long post

[Scared321]

Hello all. I appreciate anyone who is taking the time to read this.
I initially noticed something was wrong about 2.5 years ago. It started with strange anxiety.. heart palpitations and extreme fear that seemed to come out for no reason. I then noticed body wide twitching. This then followed with blurred vision in my right eye. I was so scared coupled with the anxiety, I took myself to the ER.
Tests were completed included a physical exam, blood work, CT scan of my head and MRI of my head. All negative. I was sent home and was instructed to follow up with my PCP and then a neurologist due to the type of symptoms. I am scared about the symptoms and negative findings as i live in rural area that has a hospital that has been known to miss things on images.

I continued to have these symptoms with the eye and blurry vision resolving. I went to eye doctor he saw nothing.

I went to a neurologist. A general neurologist, however he has had history and training in treating ALS. He has also completed ALS research. He thought a lot of it was due to axiety, however wanted to monitor and due further testing. Neuro physical exam was completed by him and the only change he saw was brisk reflexes at the knee. He said he was not too concerned as this was on both sides.
He then ordered and EMG and NCV test
He himself completed both. EMG was negative and NCV test was right where it should be. He said he would continue to monitor this.
This whole time i had headaches, unbelieveable fatigue and waking up with extreme body wide pain.

I continue to have a sensation of weakness in my right side, specifically my right hand and my right foot/lower leg. I have measured as it feels like my leg is getting smaller and it is 1/8 inch smaller at my ankle and my mid calf then my L side. I am right side dominant.

I work in health care and I am aware of my body, sometimes too aware.

I did continue to have follow up visits with this neurologists until recently when he left the area. I continued to express my concern regarding my fears of ALS and sesnations of weakenss on my right side and he referred me on to a neurologist in the Pittsburgh area. He completed a complete neurological physical and another EMG.. results were negative.

I am afraid these tests were completed too soon.
Because my symptoms began 2 years ago would i have noticed changes with walking etc bt now? I know everyones progression is different but I now feel like my right side is even weaker.. PLEASE PLEASE give me thoughts and suggestions

 

[aegento]

I'm not experienced in this case as you can see i posted my concern here.
However 2 years history with those syptoms and meanwhile you got 2 clean emg( which is the key point for als as i understand the whole posts in this forum)
And there is fact that emg can show neuros some signs before weakness or atrophy appear if it is done on the correct area.
So try to keep calm( i know it is hard and i'm freaking out due to my somehow dirty emg)
Anyway i can suggest you to go see physciatrist and also if you re not satisfied you can als clinic which is very common in us i guess
But dont.think there is nothing to worry about.

 

[Scared321]

thank you for your response.. I am trying..

 

[Scared321]

can my emgs be done too early?

 

[aegento]

As i said emg can show evidence of als before anything happened. So i do not think that your emg done too early..however there are people with much more knowledge about this diasae and process of its diagnose. So i just wrote the posts here which written by another person who had als or not but neuro.

 

[Scared321]

Does anyone here have any other suggestions. I have now noticed bidy wide twitching this morning. Very scared.

 

[ECpara]

Scared, I truly think you have nothing to worry about. Great news, a clean (negative) EMG means no ALS! And the underlying words throughout your post are "sensations" and "feeling". We here on DIHALS like to stress that ALS is about "failing", not "feeling". Headaches, blurred vision, body-wide pain are not ALS. "Feeling weak" is not a symptom of early onset, a muscle just begins to fail. An 1/8 inch difference in measurement is pretty insignificant, regardless of which side. No one is perfectly symmetric. I'd stop measuring if I were you. Believe me, if your initial concerns were two years ago, you would be having significant muscle failure by now (not a feeling of weakness). Your anxiety sounds like it is getting the best of you. Heart palpitations, extreme fear? Classic extreme anxiety. That's what you clearly need help with.

I wish you the best. Please get help so you can relax and enjoy your life. Blessings!

 

[Scared321]

Thank you so much expats for taking time to respond. My last question for you. Could the emg have bwwn done to early ? The first one was done like 3 weeks after my initial symptoms. The next one was done about 4 months after my initial symptoms. That is what is driving my anxiety.
The reason I say this is because I feel like even my shoe is loose on my right foot. Not that I am walking out of it. The fact that I have to tie it very tight to make it feel like it fits correctly. That is the side with the smaller calf. It is scatting me.. But I don't know if I would have had more weakness then that now or ?

 

[alex34]

If your two emg results are clear, i think u dont need to be worry. I feel just like you and my spthoms started almost 2 months ago. If u want u can write me

 

[ECpara]

An EMG will show up dirty in advance of the disease showing its' first symptoms. The EMGs you had clearly indicate no ALS. If your first "symptoms" began two years ago, you would be experiencing a lot more than a loose shoe and perceived weakness. You mention body wide twitching. It is proven that the more one worries about ALS, the more twitching they will have. You are signaling stress to your whole body with your rampant anxiety. As I said, that's what you need help with. Really, you don't have ALS.

 

[Scared321]

Thank you for taking the time to respond. I am trying to address mg anxiety directly as I have contacted outpatient counseling. I hope yhis help and will pray for eveyone on this board.

I appreciate all and any other suggestions.

 

[Scared321]

Atrophy?

Hello. I am a 30-year-old female. I have had symptoms of what I believe are neurologically related for over 2 1/2 years. I have seen two neurologist. I have had to EMGs completed. These were done when the symptoms originally started 2 1/2 years ago. Both EMGs came back negative. I have now noticed what I believe is atrophy in my right foot. My shoe feels very loose and I have to tie itas tight as possible to make it feel secure on my foot when I measure it it is approximately one half centimeter smaller than the other side. I have not noticed this in the past I've had sensations of weakness in both my hands and feet on the right side as well. I am so very scared. Does atrophy first developed then weakness I have had also episodes of twitching over the past 2 1/2 years please please give me your opinion thank you.

 

[Nuts]

Re: Atrophy?

You have 50 individual posts and here we are back where you were again. Seriously, it's time for you go to back to your doctor. We can't diagnose and I don't think that we can help you. Continuing to ask questions here at this point is only feeding your fear, and to be honest it's wearing out folks who need support because they are dieing or watching their loved ones die. I can't get excited about a 1/2 centimter difference when it's normal for people to have variation and my husband's legs are withering in front of my eyes. Everyone progresses differently, so we clearly can't reassure you at this point. I hope you get help for your anxiety, but you need to speak to a doctor, not keep asking the same questions here.

 

[Clearwater AL]

Re: Atrophy?

Let's be point blank, as you wrote,

("I have had symptoms of what I believe are neurologically related for over 2 1/2 years.")

The point... you believe! Your Neuros don't and we don't. After 50 posts...