Super Scared and Afraid

[Jayirish]

Hi All,

First off I want to send my thoughts and prayers to all of you on this forum that are suffering from ALS and to all of you that are CALS and have lost a loved one!

I was hoping you all could offer some insight and some guidance on what I should do, since you live it on a daily basis.

My name is Jimmy and I am a 40 year old married father of 3 year old twins, who are my world.
Back in October I started to experience fatigue in my arms(not weakness per say..ex- if you are holding a phone to your ear for an extended period of time and they get tired and you have to switch arms...this is what my arms feel like all the time). Shortly after this I started to experience full body twitching all over and pain and cramping in my hands along with twitching.

My legs would then became stiff and fatigued in the same capacity as my arms have and I experience bad cramps in my calfs and right foot. I called my PCP and they referred me to a neurologist in the same building, but it was a two month wait. So I called my sister, who some years back was diagnosed with benign brain cyst by her neighbor who is a well respected neuro in the area. I called him and he got me in that day.

My sister came along and he brought me in an gave me a thorough exam testing all my clinical strength and he didn't see anything alarming. He brought us both into the office and said he 100% didn't think I had ALS(I mentioned to him on the phone I thought I was having symptoms of ALS).

He immediately ordered and MRi on my spine for that day and the results came back normal as did the blood work. He said call him after the weekend if the symptoms progressed and he would order more tests. The next Friday( Nov 4) I had an EMG in his office. He called me hours after the exam and he said everything was normal. They did my entire left side on the EMG.

He again ruled out ALS or any muscular disease. He had me come back in three weeks for another neuro exam and I tested normal again. At this point was referring me to see a Physiatrist.

In the meantime he asked me to attend the appointment set by my PCP with the original Neurologist. I saw her last week and she conducted a similar exam on my strength and saw no clinical weakness. She issued a brain MRI to rule out MS and tumors, I had that this past Friday and meet with her again on the 20th of this month to discuss. After reviewing the results of my EMG she determined I didn't need a second EMG.

Sorry for such a long post but I was hoping anyone could let me know if they have experienced something similar before they were diagnosed? Could the EMG have not picked up something if it was on my right side? Should I demand another EMG? Should I get a third opinion?Was the EMG too early? My symptoms are worsening including crazy fatigue and I have no idea what to do next.

Any thing you can provide would be helpful. Again, thanks for your time reading this and my thoughts and prayers to all of you. You are amazing courageous people!

Happy Holiday's
-Jimmy

 

[codyclan]

Wow. That is is thorough post and it appears that you had two very thorough exams by two attentive neuros. Both ruled out ALS, so let me assure you that you are in the clear. Read the stickies, but no, you have no symptoms of ALS. The EMG would have picked up issues on your right side and no it was not too early. You need to work with you pcp to determine the cause of your symptoms. It is NOT ALS.
Best of luck to you,
Tracy

 

[Atsugi]

Tracy is right, as usual. ALS is out of the picture, Jimmy. Really. First of all, the symptoms you posted were not ALS symptoms. In fact, the sensory feelings of weakness that you described point AWAY from ALS. ALS is serious weakness without feeling weak. In ALS, the muscles are not tired--because they don't do anything. They just sit there limp, not receiving the 'go' signal from the brain that would normally tell them to move.

Second, the EMG was done right, according to your description. It wasn't too early, and you don't need another one to rule out ALS.

You are as clear of ALS as anybody I've ever "met" here.

 

[Jayirish]

Mike,

Thanks for your thoughts and taking the time to read my post. It means a lot coming from people who are suffering or caring for people who are suffering from ALS. I trust the opinion of those who have lived it. Your mind gets caught up in the whole thing and makes you go nuts...once the twitching started I was all over the place with my emotions. The twitching is what is throwing me off to make me think its serious...plus my arm will not get better...hoping the physiatrist will help! Thank you and the Happiest Of Holiday's to you and your family!

Jimmy