Status
Not open for further replies.

writer07

New member
Joined
Feb 20, 2013
Messages
6
Reason
Learn about ALS
Country
US
State
NH
City
Salem
Thanks to all of you for any input. I am really hoping that one of the new meds shows promise soon. I had started another thread regarding my symptoms and was much relieved, however now I have new information. Here are my symptoms. I am 54 y.o.

11/2012 abrupt onset of pain and burning sensations that migrate. Fasic starts in right hand then right foot and later randomly in body but not face. My throat hurts after I speak for a long time. No loss of loudness. Also stiffness in legs and stabbing pains- regular pains in torso but not severe enough for cramps? I don't know what cramps feel like in torso only in feet.

2/2012 Swallow study done because I have a delayed cough after eating. I am a speech pathologist and just want to make sure no swallowing issues. Swallowing is fine. The speech pathologist who does the test says my voice is hoarse and I should see an ent

5/19/2013 emg at hospital where my Neuro and GP are located is negative. No clinical weakness. Babinsky and jaw jerk reflexes are normal. Arm reflexes are brisk 3 plus. Neuro says bfs, probably autoimmune.

5/21/2013 ent appt. at a different hospital shows mild paresis of right vocal fold. Most of my symptoms are on the right. There are now two fasics in right hand. My Neuro elicited a second one and I am starting to feel a fasic in my left hand in the EXACT same place as my right. My ent says post-viral syndrome. My buttocks have recently started to burn and it feels
like it is harder to get out of a chair. I have this very odd pain under my breast bone and upper sides but it definitely doesn't feel like gerd and is frequent. I think that I may have some odd onset of als.

Questions

For those of you who have the rare symptom of burning pain, is it isolated in one area like a foot or is it in different areas at different times?

Can bulbar onset start with pain in throat after talking for an extended period of time? If so, how long after this before speech or swallowing problems developed?

Can onset involve pain that in not excruciating but feel more like deep muscle aches or stabbing pains?

At the beginning do cramps occur in the torso?

This may sound premature but I am one step from putting myself on the deanna protocol as I write. I am very scared. Prayers to all
 
Truly none of this seems like ALS. It does not start with pain. Really. It starts with dying motor neurons leading to dying muscles. Your EMG was normal and it sounds like your neuro exam was too
Btw your dates appear to be off 5/13 has not happened yet has it.
Good luck in your search for answers
 
Questions

For those of you who have the rare symptom of burning pain, is it isolated in one area like a foot or is it in different areas at different times?

ANSWER: Burning pain could be many things but not ALS.
Have you been checked for some kind of Neuropathy (which is treatable)

Can bulbar onset start with pain in throat after talking for an extended period of time? If so, how long after this before speech or swallowing problems developed?

ANSWER: No, ALS Bulbar onset does not start with pain in the throat.
I started with Bulbar onset and that is not the way it starts.

Can onset involve pain that in not excruciating but feel more like deep muscle aches or stabbing pains?

ANSWER: Again, these symptoms you describe might be related to some vitamin/mineral deficiency in your body but not ALS.

At the beginning do cramps occur in the torso?

ANSWER: No. Cramps, again might be caused by some deficiency of some nutrients (e.g. Vitamin B-12 or Magnesium)

This may sound premature but I am one step from putting myself on the deanna protocol as I write. I am very scared. Prayers to all

Yes, I think you are stressing out yourself too much thinking the unthinkable.
ALS never develops in the way you are describing your..."symptoms".
Lastly, a CLEAN---EMG definitely means this: No ALS.

Peace out.


NH
 
Thanks so much. I was doing ok until today the ent dropped the paresis or mild weakness in my larynx bomb. So scary, wish I had answers that could help everyone.
 
Status
Not open for further replies.
Back
Top