Is this ALS

[Scared33]

I can't believe that I am posting here, I have been reading threads and worrying about ALS for months.
I am a 33 year old female. In October 2014 I was experiencing extreme neck and shoulder pain, in addition to hand and arm pain that I thought was resulting from a writing intensive job. I was also experiencing headaches that were non-responsive to pain medication.
My GP sent me for a neck ex-Ray which showed straightening of the cervical lordosis. The doc thought my issues were a result of that and sent me to PT and Neuro to double check my headache issues.
Neuro examined me and sent me for an MRI of brain and CT scan of face. Both came back clear with exception of osteoarthritis in jaw. Neuro sent me for a million blood tests to make sure no auto immune disorder. Checked thyroid all that good stuff. I was also seeing a Chiro who helped immensely with neck and shoulder and arm issues. Around that time I started noticing muscle twitching all over my body (October/November).
I googled it and of course came to ALS. I spoke to my Neuro about it but he seemed unconcerned. Did an office exam and told me that he believed that it was stress. At this time I was also experiencing muscle soreness throughout my entire body. Like I had worked out really hard, but hadn't done anything. I went back for a follow up visit with my neuro and he said he suspected fibromyalgia and wanted to run some blood tests for that. He then went on a three mont vacation.
During that time I saw two additional Neuro's who both did NCS and and EMG on my arms, both also suggested fibromyalgia, anxiety, BFS. I continue to twitch and continue to be in pain. I cannot shake the feeling that I have ALS. I am sure that I have atrophy, but my Neuro's and my saint of a husband don't see anything that concerns them. I want to be an advocate for myself, but at this point I am just feeling crazy.
I am having issues (pain) when writing, but I am in a job where I typically spend my entire day writing and think this may be related.

Does this sound like ALS at all?
I have read the stickies. Just looked for some additional thoughts.

 

[Nikki J]

No.
You report pain ( not a presenting symptom) that has 2 apparent causes ( neck issues plus likely fibromyalgia per your doctors)
You have been examined by 3 neurologists and had 2 normal EMGs and were told not ALS
You think you have atrophy that no one else sees ( neuros do NOT miss atrophy)
And you have diffuse twitching which is completely nonspecific. Read the sticky on twitching. Again.
Your answers are not here

 

[Scared33]

Thank you Nikki for your response! I have read the stickies. I think I just need to stay off the internet and Google and stop freaking out. I have read so may varying accounts of this disease I am just so worried.

 

[skipper66]

The answer is a huge No! You don't have any ALS symptoms at this point. You had normal EMG'S. I don't mean to be rude but you have absolutely no reason whatsoever to be on here. You are in the clear for ALS. This is a ALS forum. Your question has now been answered by two of us. I would suggest logging off now and stay off of Dr. Google. If you can't quit worrying go see a psychiatrist for your anxiety. We absolutely can't help you on here. Plus, several of your questions were answered in the stickies and you fail to be able to comprehend them. Good luck to you.

 

[Scared33]

Thank you all again for your replies. I have read the stickies and other articles regarding als, but as I said above there are many conflicting pieces of information and I wanted to see if onset may have looked like this for anyone else. I understand that pain is not a presenting symptom, but what about pain when using particular muscles? For example my arms burn when I hold them over my head for an extended period of time. My mouth gets tired when chewing certain foods, and my legs burn when climbing stairs.
Thanks for all of the help.

 

[affected]

Scared - read the sticky again.

Then understand that no matter what you read anywhere other than that sticky it is OUR OFFICIAL REPLY AND STAND ON PRESENTING ALS.

We just can't write that sticky and then go into detail on all the reasons maybe your symptoms that differ from the sticky just might be ALS anyway.

So I can happily reply that you have NO ALS symptoms. All the best.

Tillie.

 

[Scared33]

Thank you for your understanding and kind reply.

 

[Scared33]

Gluteal Atrophy. Any information out there?

Hi,

Does anyone have any information on potential onset in the gluteal muscles? I know I have posted here before with other symptoms, but I am curious. I have a big dent on my right Glute just below my hip. I have been having twitching there (all over twitching but that seems to be a hot spot), but no weakness. I also have a smaller dent on the left side, but def not as big as my right. I should note that i have a mostly desk job (some field work) and s relatively sedentary lifestyle. I have read a little bit about pressure induced lipoathrophy (from tight clothing etc) and thought this could be it. If it was true muscle atrophy would I notice weakness? Yes, right?

 

[Clearwater AL]

Re: Gluteal Atrophy. Any information out there?

After reading your previous Thread and the replies... avoid wall mirrors, put your underwear back on and quit harassing this Forum. You don't have ALS.

 

[GregK]

Re: Gluteal Atrophy. Any information out there?

Your clean EMG was all the answer you needed.

A 'dent' is not atrophy, looking like an Auschwitz survivor is.

You need to seek answers elsewhere: you don't belong here.

 

[Vincent]

Re: Gluteal Atrophy. Any information out there?

Just so you know, the order is- weakness-paralysis-atrophy.
Vincent

 

[Scared33]

Ok, one more question. If I had the EMG done only in my arms it could not detect if there was onset in other limbs/muscles, correct? At the time I was having issues with my hands, but now I feel like and EMG of multiple places would have been appropriate.

 

[affected]

Scared this needs to be your last question.

The neurologist knew how many areas to test. You have been cleared, please move on by going back to your doctor and seeking help for health anxiety as this is very treatable.

All the best